By Abigail Johnston Piqray (Alpelisib) was the first new drug application (NDA) for a new molecular entity approved under the Real-Time Oncology Review (RTOR) pilot program on May 24, 2019. This application also used the Assessment Aid (AAid). With these two pilot programs, the approval of Piqray came approximately three months ahead of the PDUFA VI deadline of August 18, 2019. What does that mean? Well, it means that the Food and Drug Administration (FDA) is taking very very seriously the need to fast track medication that looks promising and has both developed and implemented programs to make that happen. Piqray Approval Piqray was developed by Novartis and approved to be used in combination with fulvestrant for postmenopausal women, and men, with hormone receptor (HR)-positive, human epidermal growth factor receptor 2 (HER2)-negative, PIK3CA-mutated, advanced or metastatic breast cancer as detected by an FDA-approved test following progression on or after an endocrine-based regimen. The approval of Piqray was based on SOLAR-1 (NCT02437318), a phase 3, randomized, double-blind, placebo-controlled trial of Piqray plus fulvestrant versus placebo plus fulvestrant in 572 patients including postmenopausal women, and men, with HR-positive, HER2-negative, advanced or metastatic breast cancer whose disease had progressed or on or after receiving an aromatase inhibitor. The study demonstrated that the group receiving Piqray had eleven (11) more months before progression (PFS=progression free survival) versus the group not receiving Piqray and there is no information yet on long term or overall survival (OS). Piqray Side Effects The most common reported side effects on the Piqray plus fulvestrant arm were increased glucose, increased creatinine, diarrhea, rash, decreased lymphocyte count, increased gamma glutamyl transferase, nausea, increased alanine aminotransferase, fatigue, decreased hemoglobin, increased lipase, decreased appetite, stomatitis, vomiting, decreased weight, decreased calcium, decreased glucose, prolonged activated partial thromboplastin time (aPTT), and alopecia. Piqray Dosage The recommended Piqray dose is 300 mg (two 150 mg film-coated tablets) taken orally, once daily, with food. When given with Piqray, the recommended dose of fulvestrant is 500 mg administered intramuscularly on days 1, 15, and 29, and once monthly thereafter. Piqray Cost The price of Piqray tablets is $15,500, but the actual amount a patient will pay largely depends on their insurance plan. Depending on whether you have Commercial or Private Insurance, 83% of patients can expect their Piqray prescription to cost between $0-$10 dollars per month. If you have Medicare Part D coverage, 73% of Piqray prescriptions will cost between $0-$10 dollars per month. Lastly, under Medicaid coverage, 99% of patients can expect their Piqray prescriptions to cost $0-$10 dollars per month. Piqray Prescription Label Piqray Pioneers I’ve been taking Piqray since August of 2019 and I currently am one of the administrators of the Facebook group for people taking Piqray, which includes individuals with other kinds of cancer and people who just have the mutation, PIKC3A, with no cancer. The varying experiences have been fascinating, especially since we have many countries represented in the group as well. What I can tell you from the group is that Piqray has its pros and cons, just like any other cancer drug. For those of us who were prescribed Piqray as the first in our doctor’s offices, we call ourselves #PiqrayPioneers. Most of us had to figure out how to deal with the medication and its side effects largely on our own since most of the doctors weren’t fully equipped to help us and that’s been a gift to the patients newly taking Piqray. I’ve seen how patients help each other and how much we have to offer each other in this and other support groups. If you are a patient taking Piqray, I’ve included a link to the support group below. Piqray Side Effects Another interesting development is that managing the side effects of Piqray usually includes bringing new people onto the team who aren’t usually as fluent in cancers. Since Piqray often causes hyperglycemia (high sugar levels), most of the people taking Piqray need to see an endocrinologist. Endocrinologists are experts in helping patients manage their blood sugar; however, not usually in the context of cancer. Once we started hearing that the endocrinologists needed more training and information, the patient group turned to Novartis and asked for physician education to be developed for doctors other than just the medical oncologists. This is in progress. Piqray Life Style Changes Additionally, since diet changes are necessary (most of us on Piqray stick with a modified keto diet) and weight changes can be significant on Piqray, engaging a nutritionist who is skilled in working with cancer patients has also been a key addition to the team. For me, since both Piqray and the medication I take to help with my blood sugar, Jardiance, causes weight loss, I’ve struggled with maintaining a healthy weight. Talking with my endocrinologist and my new nutritionist has helped me adjust my caloric intake to address my weight loss. There are some additional studies looking at other medications in this class, but for now, Piqray is the only FDA approved medication to target the PIKC3A mutation. Here are some additional sources: See the Piqray FAQs Piqray Support Group: Join the closed Facebook Group and be sure to mention you hear about it from Survivingbreastcancer.org! View full prescribing information for PIQRAY. Guidance for Industry: Expedited Programs for Serious Conditions-Drugs and Biologics. About the Author: In 2017, at the ripe old age of 38, while living in Orlando, Florida, I was diagnosed with Stage IV Metastatic Breast Cancer after feeling a lump in my left breast while tandem nursing my boys, who are now 7 and 5. The summer of 2017 was a rollercoaster of emotions as I faced four body and life-changing surgeries amidst chemo and radiation.  Once the whirlwind had settled a bit and I’d completed transitioning my clients and staff at my law firm to another law firm, my husband, two boys and I moved to Miami to live with my family.  Looking back, I’m astonished at how much has changed, how much we have overcome as a family, and how everyone has adjusted.  While I don’t actively practice law, I use my education and training in a variety of ways for the breast cancer community, advocating for patients and thrivers.  I have started my own non-profit, Connect IV Legal Services, where I recruit lawyers to do pro bono work for Stage IV patients. I’m also active in many local and national organizations, volunteering and adding my voice to educate and persuade others to connect with and help my community.  You can connect with me by checking out my blog, www.NoHalfMeasures.blog, or following me on Twitter, Instagram, Facebook, LinkedIn, or YouTube! - Abigail Johnston

By Mary Ladd When I was diagnosed with triple negative breast cancer at age thirty-nine, people became needy and pushy, wanting me to help them feel better about my disease. I didn’t have the energy to answer so many questions. My solution? Email stories, medical stats and updates using my usual sarcasm and sass. I wrote things down so that I could document and process my emotions and experiences. I also realized chemo brain is real, and having a written record was necessary when I couldn’t remember vitals. From the comfort of my couch, I felt connected to the outside world, even if I missed the hustle bustle and normalcy of my pre-cancer life. With the support of writers such as Mary Roach, Daniel Handler, Robert Mailer Anderson and Vanessa Hua, I wrote my way through things like: Nursing a crush for my surgeon Digging poop out of my own body after days of constipation Little girls telling me to take off my wig (that’d be a no!) Searching for an end point. There isn’t an end point! Singing “Dildos Are Forever” under anesthesia in the surgery stadium I partnered with a friend, cartoonist Don Asmussen, creator of the San Francisco Chronicle feature "Bad Reporter." He was a cancer survivor at the time and had me giggling and spitting out my coffee as he made fun of me while sharing his own side effect-tales about losing his hair. We’d meet in a mall food court to talk about “The Wig Diaries” book project, and the result is an illustrated compilation of essays that tackles druggy wig shopping, going naked at the hot springs with a mangled body and only one nipple and the sorrow of hair loss and withered sexuality. Because I use humor, this is not Chicken Soup for the Cancer Soul. As I said goodbye to body parts, I fretted over finances while also debating if eating too much BBQ or wearing cheap and sparkly drugstore make-up contributed to my cancer. Bouts of middle of the night insomnia made me feel especially afraid. There was also the aching grief and guilt of mourning patients who were Stage Four. I sincerely wanted to take away their pain and disease. Cancer forced me to learn to sit still with this kind of terrible helplessness and discomfort. It was cathartic to lay it all out via my stories, while sharing helpful tips on what to say to someone with cancer. We don’t get enough practice using language about illness, death and grief, and it takes practice. I try to have compassion when folks screw up, and give me advice to drink more lemon water or ingest a lot of turmeric and brown rice. Yet many studies show that writing about thoughts and feelings in the face of unexpected life happenings such as cancer lowers anxiety and stress. Sign me up! Coronavirus remains incredibly challenging for many. Yet writing things down has been a great way to keep moving forward. When I teach writing classes, students enjoy using writing prompts, which are short bits of text used to kickstart our creativity. Once coronavirus started shutting many aspects of “normal” life, I went into research mode. So many of my friends were now being forced to face their fears and experiences in the same fashion I did with cancer. I decided to create a book called “Write it Down: Coronavirus Writing Prompts,” using 186 short writing exercises. Writers of all stripes can choose their own adventure. Some tips: At first, it may be tough and possibly surprising when certain thoughts and emotions surface. Write what you can. Keep the pen to the paper (or fingers on the keyboard) for five minutes. If you stumble, write a list of thoughts and ideas that you can come back to. There’s no need to fuss over spelling or word flow. Note any prompts we do not get to are for you to try out in your writing practice. Writing: You might find it helpful to write as if you are in conversation with a close friend, favorite teacher, or other trusted person. Describe how people move and talk, including posture, voice and/or mannerisms. What colors, textures, people and things are nearby? Colors and scents are especially evocative. Dig into these sample prompts from the book: What’s your secret weapon: Are you organized? Strong? Fierce? Forward-thinking? Smart? Calm? Hardworking? Funny? Describe the ways in which you’ve recently used this secret weapon. Write an underwater scene with a cast of marine-life characters. Make it a drama, romance, science fiction piece or something else. When’s the last time you had a great, rolling belly laugh? What happened? Write in detail about what you’ve learned about your roomies/family after being forced to spend way too much time together in close quarters. What are some things that annoy you? Could be loud chip-eating noises, 20-minute shower takers, or the not-so-mysterious way a certain someone leaves dirty dishes everywhere. If you live alone, examine the things you do that would annoy others, or create a cast that lives together in a large co-op, cramped apartment or other scenario. Writing has helped me realize how fragile, weird, sad and exciting life can be. The routine has now become celebrated. When I was bald, bloated and exhausted from cancer, I used to look out the window and assume everyone was having a wonderful time doing amazing fun things. Now I have to use my brain to remember some of the fun and amazing things we all used to do because those activities are on hold and things feel especially upside down. Mary Ladd teaches online writing classes at The Writers Grotto and has written for Playboy, Time Magazine and the San Francisco Chronicle. She collaborated with Anthony Bourdain on “No Reservations” and is the author of “Write it Down: Coronavirus Writing Prompts” and “The Wig Diaries.” Ladd plans dance parties for Bay Area Young Survivors (BAYS), a support group for young people living with breast cancer. You can find her upcoming events, classes and book information at maryladd.com. “Write it Down” can be purchased at Lulu.com, Barnes & Noble and as an e-book at Smashwords. “The Wig Diaries” is available at Green Apple Books and other bookstores, as well as on Amazon.

By Rachael Curry What is IDC? Invasive ductal carcinoma (IDC) is the most common type of breast cancer, accounting for 80% of all breast cancers in women and 90% in men. Yes, you read that correctly – 1% of men are diagnosed with breast cancer. Also called infiltrating ductal carcinoma, it refers to a type of cancer that has spread beyond the ducts, which carry milk from the breast lobules to the nipple. “Invasive” refers to this spread of the cancerous cells, while “ductal” refers to the origination of the cancer in the milk ducts, and “carcinoma” refers to a type of cancer that begins in the skin or protective tissues such as breast tissue. While IDC is most common in older women, especially those over the age of 55, it can also affect younger women and men. Like many forms of breast cancer, IDC often has no symptoms at first. However, signs might include: A lump in the breast or underarm, Skin irritation, pain, Redness or scaly texture on the breast and nipple, Unusual discharge from the nipple, or The nipple turning inwards. IDC is usually initially detected as a lump in a screening mammogram, which takes an x-ray picture of the breast. This then leads to a biopsy and other testing procedures to assess the size and spread of the tumor. Potential tests include CT scans (using multiple angles of x-rays to create cross-sectional imaging), PET scans (using imaging to visualize metabolic processing within the organs and tissues), MRI (using a magnetic field to create images of organs and tissues), bone scans (using nuclear imagine to detect the presence of metastatic cancer in bones), and chest x-rays. Invasive Ductal Carcinoma Prognosis So – is invasive ductal carcinoma “curable”? The linguistics of the word “curable” are not black and white. In this case, we will assume that “curable” means that there is no remaining evidence of disease. The short answer, then, is that IDC can be curable with the correct treatment methods. Treatment will be determined based on the stage of IDC, which classifies the size and location of the cancerous cells. The provider will analyze the growth and spread of the lump throughout the body to determine this. IDC consists of four stages. Stage 1 means that the tumor is smaller than 2 centimeters in diameter and the breast cancer is contained to just the breast. Stage 2 is a smaller lump that has only spread to a few lymph nodes in the underarm area while Stages 3-4 refer to a larger lump that has spread to multiple lymph nodes or other organs. The 5-year survival rate of Localized IDC is 99% while Regional IDC is 86% and Distant IDC is 27%. With IDC, there are usually strong positive prognoses, although as with any medical procedure, it is impossible to guarantee a 100% success rate. How is IDC Treated? Treatments are classified as either local, meaning they only target one area of the body, or systemic, meaning they target the entire body – likely for a cancer that has spread and progressed to a further along stage. Local Treatments Local treatments include surgery and radiation therapy. Surgery is used to remove the breast tumor, which is sufficient if the cancer has not spread to the lymph nodes. Either a lumpectomy will remove the lump and a bit of surrounding tissue, or a mastectomy will remove part or all of the breast tissue. Radiation therapy directs rays of high energy on the breast to destroy any remaining cancerous cells after surgery. Systemic Treatments Systemic treatments include chemotherapy, hormonal therapy, and targeted therapy. Chemotherapy utilizes powerful medicine to destroy cancerous cells in the body by traveling throughout the bloodstream. Side effects are frequent since this also weakens healthy cells within the body. Hormonal therapy, also called anti-estrogen or endocrine therapy, is used to lower the amount of estrogen in the body. Because the hormone estrogen signals the growth of cancerous cells, this form of therapy can either destroy or block the hormonal receptors that create this signal. Targeted therapy similarly targets certain parts of cancerous cells to inhibit their growth. Conclusion The treatment method for IDC will be determined between yourself and your provider. Regardless of the treatment selected for your personal circumstances, there is a largely positive outlook. Routine mammogram screenings are important to detect potential invasive ductal carcinoma early on when there may be no symptoms, and lead to prompt treatment initiation. Read more about breast cancer risk factors. https://www.hopkinsmedicine.org/breast_center/breast_cancers_other_conditions/invasive_ductal_carcinoma.html https://www.breastcancer.org/symptoms/types/idc https://www.webmd.com/breast-cancer/ductal-carcinoma-invasive-in-situ About the Author I am a 2019 graduate of the University of Michigan with a BA in Gender and Health, and a current MPH candidate at Boston University focusing in Healthcare Management. I am interested in the intersection of social identity and women’s reproductive health. In the future, I hope to help create a more accessible and equitable healthcare system for all women. During my free time, I enjoy painting, drawing, running, and hiking.

By Abigail Johnston Breast Cancer Definitions Once I was told that I have Stage IV Metastatic Breast Cancer in the Spring of 2017, I started a notebook with terms and definitions.  I’ve gone through several of them in the last three (3) years and I’m always adding to the basic definitions that I found initially.  I style myself a professional patient and part of that status is that I’ve literally had to learn a new language.  My old skills of reading and analyzing often hamper me now; wordsmithing is literally my thing and that doesn’t work well at all when reading medical reports! Germline vs Somatic Mutations Two terms that I’ve had to learn quite a bit about are “Germline Mutations” and “Somatic mutations,” as well as the different tests to determine each.  Why do we need to know these things?  I’m glad you are here to learn a little bit about why knowing if you have one or more of one or both of these types of mutations is important. Genetic Testing When I was initially diagnosed with breast cancer, my doctor performed a whole lot of tests.  It was a crazy whirlwind and I had a limited understanding of why she was performing most the tests because I blindly followed her lead.  I think a lot of us are in that boat at the beginning or at least less able to process and evaluate the barrage of information coming towards us.  Once the dust started to settle and I actually received all of the paperwork that showed what was going on, I spent a lot of time reading each word.  I discovered that one of the tests my doctor performed was a genetic test. A genetic test is “the study of a person’s DNA in order to identify genetic differences or susceptibility to particular diseases or abnormalities.”  My genetic test involved a phlebotomist drawing a vial of blood and then waiting on the result.  We received a really thick, detailed report from Myriad Genetics, the company my doctor selected.  That report revealed that there was a mutation that I received from my mother, the ATM mutation, and that this mutation was actionable (more about genetic testing on our podcast). Germ line (sometimes one word, sometimes two) means “A series of germ cells each descended or developed from earlier cells in the series, regarded as continuing through successive generations of an organism.”  Since we get half of our DNA from our biological mothers and half from our biological fathers, our literal cells are derived 100% from theirs.  We discovered that the ATM mutation is quite prevalent in my mother’s family and each of us who has tested positive has had to make hard choices as to how to deal with the genetic abnormality before or after a breast or prostate cancer diagnosis. One great resource for anyone who has hereditary cancer of any kind is FORCE, which stands for Facing Our Risk of Cancer Empowered.  From their website, the ATM Mutation is defined as “Inherited mutations in the ATM (Ataxia-Telangiesctasia mutated) gene are associated with increased risk of certain cancers.  People who inherit a mutated copy of ATM from one parent are at increased risk of female breast cancer (up to 52% lifetime risk), and possibly pancreatic, prostate and other cancers.  Ongoing research may identify other cancer risk, such prostate and pancreatic cancer in people with inherited ATM mutations.” A key point about selecting a genetic company is that it is a reputable lab who has the ability to ensure that your testing will be re-reviewed as new information comes out about mutations.  This field is ever changing and the labs are then required to send a letter to the patients when their testing is updated and new mutations are discovered.  Since precision medicine is the future, knowing exactly what can be targeted may mean the difference between life and death at some point.  None of the direct to consumer genetic testing companies (23&Me, Ancestry, Color, etc.) do this follow up and that could lead to a false sense of security. Once you know if there is a germline mutation, then what? At this point, there aren’t any specific medications for the ATM mutation, but there are for the BRCA mutations and many of the ongoing clinical studies contain different arms that are looking at the effect of each medication on different germline mutations.  The future is precision medicine and to get there, scientists need to know if cancer will behave differently when a germline mutation is present in the body. Additionally, knowing whether a mutation carries a risk of another type of cancer may change surveillance or timing of testing to ensure that no other cancer has begun to grow. Lastly, knowing that you carry a germline mutation then requires an analysis of whether you have a child who might be affected or whether you decide to have children at all or seek scientific intervention to prevent passing along a mutation. Another type of test that may be offered to you or you might want to ask about are genomic tests that look for somatic mutations in a resectable tumor.  See what I said about the different language?  I’ll break it down. Genomic Testing, in contrast to genetic testing is “relating to the haploid set of chromosomes in a gamete or microorganism, or the complete set of genes in a cell or organism.”   So, instead of looking at the similarities between a series of cells (genetic), genomic testing looks at the individual cells to examine why those cells are different from others.  For me, my genomic testing was done on my original tumor removed from my left breast through a lumpectomy since my metastasis are all inside my bones, which makes them inaccessible or not resectable (obtainable via surgery).  For someone with a tumor or met in the soft tissue like the lung or liver, a biopsy of that metastasis would give the most up to date information. While genetic testing is usually covered by insurance or provides generous assistance with co-pays, genomic testing is still not as prevalent. When I completed mine in 2018, it was through a trial at Memorial Sloan Kettering (MSK) and I had access to that trial because my cancer center in Miami has a partnership with MSK.  I have heard that obtaining insurance coverage for genomic testing is not as easy yet, but that it is getting easier, especially when understanding if there is a targetable mutation is becoming more key as more and more precise targets are approved by the FDA. Somatic means “of the body” in contrast to being of the mind and a somatic mutation is quite literally a mutation of the cells of the body.  These mutations are ones that the cancer cells have acquired through their growth and uncontrollably copying of themselves.  As the cells copy themselves over and over, some pieces of the DNA are lost, some are acquired and the cells continue to mutate.  Once a mutation has begin, it often continues through the rest of the copies and the thus, a target is created. For example, my genomic testing revealed five (5) mutations, all various combinations of letters and numbers.  My report told me that the only actionable mutation on the list was the PIK3CA mutation.  In May of 2019, the very first medication to target the PIK3CA mutation, Piqray (abelisib) was fast tracked by the FDA and when I had progression in August of 2019, I was able to get right on it.  Knowing that the genomic testing led directly to a medication that was available to me was truly a satisfying experience. As you can see from the above, I have benefitted from both genetic and genomic testing in that each has given me a different piece of the puzzle and informed the actions that I, my family, and my medical oncologist has taken.  For this reason, I often suggest to other patients with cancer that they get testing done to see if there are actionable results. However, one thing to consider is that it is still a possibility that no mutations will be found on either test.  I have known several friends who are in that very situation and it can be discouraging to go through the trouble of arranging and getting a test covered only to find out that the results are not helpful at that time.  There is always the chance that ongoing research would mean that further testing could be done on the same or an updated sample; however, understanding that the results may not result in actionable data is something to consider before walking down this road. About the Author: In 2017, at the ripe old age of 38, while living in Orlando, Florida, I was diagnosed with Stage IV Metastatic Breast Cancer after feeling a lump in my left breast while tandem nursing my boys, who are now 7 and 5. The summer of 2017 was a rollercoaster of emotions as I faced four body and life changing surgeries amidst chemo and radiation.  Once the whirlwind had settled a bit and I’d completed transitioning my clients and staff at my law firm to another law firm, my husband, two boys and I moved to Miami to live with my family.  Looking back, I’m astonished at how much has changed, how much we have overcome as a family, and how everyone has adjusted.  While I don’t actively practice law, I use my education and training in a variety of ways for the breast cancer community, advocating for patients and thrivers.  I have started my own non-profit, Connect IV Legal Services, where I recruit lawyers to do pro bono work for Stage IV patients. I’m also active in many local and national organizations, volunteering and adding my voice to educate and persuade others to connect with and help my community.  You can connect with me by checking out my blog, www.NoHalfMeasures.blog, or following me on Twitter, Instagram, Facebook, LinkedIn, or YouTube! - Abigail Johnston

By Jessica Wise Disclaimer: This post is not intended to be taken or received as nutritional advice nor is the author able to offer nutritional advice. Each patient who is interested in statements made herein should consult with a qualified medical professional to learn more. Soy foods are naturally cholesterol-free, low in saturated fat, and high in fiber. In many ways, soy foods are an excellent source of protein and a great alternative to red or processed meat; however, there is conflicting information regarding the potential effect of soy consumption on breast cancer development. While some experts emphasize the beneficial effects of soy foods, others believe soy may increase a person’s risk of developing breast cancer. Let us begin by understanding why this might be. Phytoestrogens and breast cancer Natural soy foods contain phytoestrogens, plant-based estrogen compounds. Since estrogen is linked to certain types of hormonal breast cancer, many individuals fear that soy can increase their risk for breast cancer development. There have been several research studies conducted to assess the association between soy consumption and breast cancer development; animal studies have primarily established a positive correlation between soy consumption and breast cancer, but human population studies have not produced this same result. Soy foods are a staple in traditional Asian diets, making the intake of soy foods across the lifespan of Asian men and women much higher than that of American men and women. Recent studies have tried to understand the potential effect of soy consumption on breast cancer development in Asian women, and the evidence does not indicate a detrimental effect. In fact, the evidence points to a beneficial effect: Consumption of soy foods may lead to a decreased risk of breast cancer among Asian and Asian American women. In the US, soy consumption often comes from soy additives in foods or processed soy foods. It is known that processed foods can increase a person’s risk for cancer, so perhaps we should focus on eating whole soy foods like edamame and tofu. For those of you who are concerned about eating soy foods and their risk of breast cancer development, then there is no need to add soy to your diet. Like any food, consuming soy in moderation is important. Here is a list of phytoestrogen foods that are healthy in the unprocessed state: · Tofu · Tempeh · Edamame · Linseed (flax) · Sesame seeds · Barley · Lentils · Alfalfa · Mung beans · Apples · Carrots References: Korde, L. A., Wu, A. H., Fears, T., Nomura, A. M. Y., West, D. W., Kolonel, L. N., Pike, M. C., Hoover, R. N., & Ziegler, R. G. (2006). Childhood soy intake and breast cancer risk in Asian-American women. Cancer Epidemiology and Prevention Biomarkers, 15(12 Supplement), B163–B163. Phytoestrogens: Benefits, risks, and food list. (n.d.). Retrieved June 11, 2020, from https://www.medicalnewstoday.com/articles/320630 Ziaei, S., & Halaby, R. (2017). Dietary Isoflavones and Breast Cancer Risk. Medicines, 4(2).

By Abigail Johnston Disclaimer: This post is not intended to be taken or received as medical advice nor is the author able to offer medical advice. Each patient who is interested in medication or statements made herein should consult with a qualified medical professional to learn more. Trodelvy Approval On April 22, 2020, the FDA approved sacituzumab govitecan-hziy (Trodelvy) for the treatment of adult patients with metastatic triple-negative breast cancer (mTNBC) who have received at least two prior therapies for metastatic disease, so it would be the third line of treatment for those living with mTNBC. Trodelvy (try saying that 5 times fast) is the first antibody-drug conjugate approved by the FDA specifically for metastatic triple-negative metastatic breast cancer. It is also the first FDA-approved anti–Trop-2 antibody-drug conjugate. If that sounds like another language, it really is. The bottom line is that this new medication represents a significant step forward in the treatment of mTNBC, a diagnosis that often carries a very grim prognosis and, until recently, has lagged behind the other subtypes in terms of available treatments outside of traditional chemotherapy. As of December 2020, Gilead released new data from the ASCENT trial that continues to show promising results of Trodelvy for patients with mTNBC. Gilead has submitted a Biologics License Application (sBLA) to the Food and Drug Administration (FDA) to receive full approval for Trodelvy as a treatment option for adult patients with mTNBC who have received at least two prior therapies. Trodelvy and Metastatic Triple-Negative Breast Cancer “Metastatic triple-negative breast cancer is an aggressive form of breast cancer with limited treatment options. Chemotherapy has been the mainstay of treatment for triple-negative breast cancer. The approval of sacituzumab govitecan-hziy represents a new targeted therapy for patients living with this aggressive malignancy,” said Richard Pazdur, MD, Director of the FDA’s Oncology Center of Excellence and Acting Director of the Office of Oncologic Diseases in the FDA’s Center for Drug Evaluation and Research. “There is intense interest in finding new medications to help treat metastatic triple-negative breast cancer. [This] approval provides patients who’ve already tried two prior therapies with a new option.” For more information from ASCO (American Society of Clinical Oncologists), you can read more here. ASCENT Trial The trial (ASCENT) that led to the approval by the FDA in May of 2020 enrolled 108 patients (a BIG thank you to those brave souls) who had undergone a range of 2-10 prior treatments for metastatic disease. The medication (10mg/kg) is an injection administered twice in a 21-day period. From my review of the study, “The overall response rate was 33.3% (95% confidence interval [CI] = 24.6%–43.1%), with a median duration of response of 7.7 months (95% CI = 4.9–10.8). Of the patients with a response to sacituzumab govitecan-hziy, 55.6% maintained their response for 6 or more months and 16.7% maintained their response for 12 or more months.” Trodelvy Side Effects The side effects are pretty similar to many other targeted therapy with 25% or more reporting nausea, neutropenia, diarrhea, fatigue, anemia, vomiting, alopecia, constipation, decreased appetite, rash, and abdominal pain. The worst side effects, which are included in the boxed warning are the risks for severe neutropenia and severe diarrhea. The confirmatory phase III ASCENT study was recently halted by the independent data safety monitoring committee because of the data that was already collected in light how well the Trodelvy appears to be working; however, access to Trodelvy may be contingent on the ASCENT study continuing to show the same data. This is an example of expedited approval prior to the conclusion of Phase III (the last phase) of the trial and represents the FDA’s commitment to expediting the approval process of medication that shows efficacy to the public. Ongoing monitoring of safety and the experiences of patients on the medication will be key to watch as more men and women are prescribed the medication and more endpoints are reviewed. One aspect of trials conducted in the US under the supervision of the FDA are those endpoints. Most trials look at Progression Free Survival (PFS), as was examined in ASCENT for Trodelvy. It could certainly be argued that having the approval expedited prior to the end of Phase III of the trial means we are missing key data. We are missing the Overall Survival (OS) data that patients are often very concerned about. At the same time, the medical professionals involved with the trial and the approval process deemed that patients having access to the medication in light of its niche and being the first in its class was more important than waiting on that data. The patients taking the medication as a last resort are certainly happy about that. Listen to our latest podcast featuring a lively discussion on Trodelvy and treatment options for metastatic breast cancer. For more information on TNBC, read an interview with Sara and Caitlin, two thrivers of SBC's community, here. About the Author: In 2017, at the ripe old age of 38, while living in Orlando, Florida, I was diagnosed with Stage IV Metastatic Breast Cancer after feeling a lump in my left breast while tandem nursing my boys, who are now 7 and 5. The summer of 2017 was a rollercoaster of emotions as I faced four body and life changing surgeries amidst chemo and radiation.  Once the whirlwind had settled a bit and I’d completed transitioning my clients and staff at my law firm to another law firm, my husband, two boys and I moved to Miami to live with my family.  Looking back, I’m astonished at how much has changed, how much we have overcome as a family, and how everyone has adjusted.  While I don’t actively practice law, I use my education and training in a variety of ways for the breast cancer community, advocating for patients and thrivers.  I have started my own non-profit, Connect IV Legal Services, where I recruit lawyers to do pro bono work for Stage IV patients. I’m also active in many local and national organizations, volunteering and adding my voice to educate and persuade others to connect with and help my community.  You can connect with me by checking out my blog, www.NoHalfMeasures.blog, or following me on Twitter, Instagram, Facebook, LinkedIn, or YouTube! - Abigail Johnston

A Phenomenological Study, Utilizing Bounded Rationality, Explores the Decision-Making Processes Associated with Genetic Testing for a Predisposition Towards Breast Cancer Presented at 2020 Carol Carfang Nursing & Healthcare Ethics Conference The complicated nature of genetic testing requires breast cancer medical professionals, and those diagnosed with breast cancer, to explore multiple outcomes with the understanding that optimal solutions may not be available, thus requiring them to select among lacking options, and make good decisions based on incomplete information within the context of unknown and dynamic variables.  Through the lens of bounded rationality, the findings reveal that complex decision-making evokes strong emotions, and requires those diagnosed with breast cancer to incorporate a combination of strategies and processes as they maneuver through both linear and non-linear paths for acquiring information, seeking alternatives, and making decisions. ​ Purpose The purpose of this study was to explore how those diagnosed with breast cancer navigate the decision-making process associated with genetic testing. Research Question: What are the main characteristics of rational choice among those who have been diagnosed with breast cancer (or are at a high risk for developing breast cancer) in situations where complexity precludes individual implications? ​ DOWNLOAD PDF Descriptive Phenomenology Phenomenology is both a philosophical practice and psychological scientific method.  Grounded in the works of Kant & Hegel, Husserl became known as the modern-day founder.  Phenomenological research acknowledges that there is a need for understanding a phenomenon in order to improve practice.  Husserl asserts that the aim of phenomenology is the rigorous and unbiased study of things as they appear.  It provides a deeper understanding of lived experiences by making evident the taken-for-granted assumptions of the phenomenon and allows the researcher to adopt an understanding of how the phenomenon presents itself to the participants’ consciousness. Specifically, descriptive phenomenology as an application is pre-transcendental and focuses on how human consciousness relates to the human world. ​ Data Analysis •Critical sampling •Participants – Women diagnosed with breast cancer •Open ended interviews, 60-90 minutes, Recorded and transcribed •Delineating units of meaning •Cluster and categorize themes •Structural analysis and expressions •Creating the essential structure •Phenomenological reduction •Bracketing •Memo-ing •MAXQD ​ Themes Outcomes-Based Decision-Making Surgical Options; Impact on Family Group Decision-Making Collaboration with spouse; Collaboration with doctors; Collaboration with offspring and relatives Emotional Orientation Psychological, Emotional, Stressful, Unexpected Procedural Strategies Collection of information; Processing of information ​ Findings 1.Complex decision-making processes stem not only from the complexity of genetic testing, but also from the information (or lack thereof) that the person has at the beginning of the investigation, i.e., at the time of diagnosis. ​ 2.Complex decision-making involves a shift or alteration in emotion. This is captured from all of the participants as they describe their experience from wanting genetic testing whole-heartedly, to the aftermath and long-term effects, i.e., living with  knowledge of the results (which can’t be reversed). ​ 3.Complex decision-making can be both linear and non-linear resulting from the outcome of the genetic test. ​ Findings in Relation to Practice •Assist medical professionals in understanding the interconnectivity of linear and non-linear processes associated with complex decision-making as they endeavor to advise their patients on genetic testing. ​ •Assist practitioners in understanding the emotional and psychological impact of genetic testing, and complex decision making, when perfect or complete information is not available. Listen to the stories of those who participated in the study. Coming Soon on the Breast Cancer Conversations Podcast.

By Contributing Writer, Amy Ferraro Whitsett I will start with the cancer part of my story. I was diagnosed at age 45 with early-stage breast cancer. I was fortunate it was found on a mammogram before it could be felt. The worst part was the time between the second mammogram and the biopsy result. Trying to be helpful, the radiologist told me it was most likely cancer. But since breast cancer was NOWHERE on my radar, I was shocked and confused. Once diagnosed, and through the good fortune of having a well-positioned friend and a super helpful nurse practitioner as my PCP, I was seen by a team of doctors less than 72 hours later. Then I was on my way to surgery, chemotherapy, radiation, genetic testing, and anti-hormone therapy at one of the best institutions in the world. I have supplemented it with alternative medicine, lots of yoga, lots of reading, more exercise, a naturopath, and supplements. The experience sucked, but there have been silver linings. I have spent the last 25 years working in the health and human services arena, behind the scenes. I helped agencies gain funding so that they can serve consumers. Over the years I have joked that I “kill trees to save children” or “would make a lousy social worker so I make sure the social workers have money to do what they need to do”. I love my work, but my personal experience gave me a longing to do more on the front lines and ensure that the public understands the benefit of certain programs I have been fortunate to work with, including Medicaid. I want people to know about the positives of Medicaid and how to access it if they need to. There are two large public health insurance programs in the United States, Medicare and Medicaid. Medicare is for individuals over aged 65 and certain aged, blind, and disabled. Medicaid is a means-tested program for certain groups that do not have access to health insurance or whose health insurance is limited. There are dual eligibles, eligible for both programs. How Most Americans Get Health Insurance Today, largely because of the Affordable Care Act (ACA), you can apply via streamlined, online systems that determine if you are eligible for Medicaid or should purchase a system via the federal or state exchange (depending on where you live). There is also a more traditional collaboration with other benefit programs such as the supplemental nutrition program (SNAP). Approximately 20% of Americans are insured through Medicaid and Medicaid pays for nearly half of all births. Medicaid is administered by the states and territories but funded by both the federal and state governments (for the purpose of this post, state is inclusive of territories and the District of Columbia). There is a separate program, the Children’s Health Insurance Program (CHIP), that covers additional children and in some cases their parents and is closely aligned with Medicaid. States must cover certain groups, for example, children at or below 138% of the federal poverty level (FPL). States then have the option to cover other groups. There are also required and optional services. Some of the services called optional in law are not optional in practice, for example, prescription drugs. It would not be practical nor cost-effective for Medicaid to not pay for prescription drugs. When Medicaid was created in 1965, prescription drugs were not part of private insurance either because they were not as prevalent as they are today, hence some of the out of date lingo. The ACA sought to reduce and ideally eliminate the number of uninsured in the United States by increasing the number eligible for Medicaid (Medicaid expansion) and creating marketplaces where individuals and small companies who do not have access can purchase insurance. Individuals who do not qualify for Medicaid because they are over income may be eligible for a subsidy to help defray costs, up to 400% of the FPL. The Supreme Court ruled that the penalties imposed on states for not expanding is unconstitutional. Thus, not all states have expanded and there is still a sizable uninsured population. “Medicare for All” is a catchphrase that theoretically means a single health insurance program. It is more politically prudent to say “Medicare” for all than “Medicaid” for all because Medicaid is often associated with welfare. What it means varies widely, from putting everyone on Medicare as we know it, to scrapping Medicare and starting over, to expanding the ACA for all. Whatever happens, Medicaid has yielded many benefits to direct recipients and society at large. Since Medicaid was implemented, we have reduced infant mortality, improved outcomes for low-income children, provided more services for the disabled and eased the costs of healthcare on all Americans. Medicaid is the largest funder of long-term care for the elderly and the disabled. And it will be put to the test with the COVID-19 pandemic. As for breast cancer treatment, if a man or woman already enrolled in Medicaid is diagnosed with breast cancer treatment will likely be covered. If they reside in a state that has not expanded, they may not be eligible for coverage, regardless of income, if they are not in an existing coverage group. The ACA mandated that private insurance, individual insurance plans, and state Medicaid expansion programs cover breast cancer screenings at no cost in accordance with recommendations from the United States Preventive Services Task Force (USPSTF) and the Health Resources and Services Administration (HRSA). If an individual is covered by a traditional Medicaid coverage group, coverage of screenings will be based on the optional service coverage in the state, though most states will cover screenings (the preceding information is from www.kff.org). The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) helps low income, un-and under-insured women access screening procedures and referral to services. The Breast and Cervical Cancer Prevention and Treatment Act (BCCPTA) gives states the option to grant Medicaid coverage to women if they are uninsured, under 65, and diagnosed with breast or cervical cancer via an NBCCEDP screening. The eligibility criteria vary from state to state. As I close out this post, I am sure some of you think that it is long and technical for a blog post. Medicaid is incredibly complicated and if you need to access it, it comes down to where you live. But it is woven into our healthcare fabric and has yielded great benefits. If you want to know more, www.kff.org is a good place to start.

To all the gorgeous ladies who are struggling with breast cancer: “You are stronger than you think, and you are beautiful; it doesn't matter how cloudy your life looks”. Today, rock painting is my hobby and escape. Painting rocks gives me peace and allows me to share my happiness with others. Besides giving them away to my friends, I like to leave newly painted rocks next to others in public places. Today, I proudly celebrate being a breast cancer survivor. So far I learned to listen to my body and put my life into perspective. Two years ago, at the age of fifty-one, I was introduced to the world of cancer. I was a mature and fulfilled person being a lead esthetician at the peak of my career. I enjoyed my job and every day of work was a pleasure for me. The doctors said I had an Invasive Lobular Carcinoma of my right breast, 2 cm, HER 2 negative, stage II. When they told me the diagnosis, I felt like my days were numbered. All the horror stories about breast cancer and chemo came to my mind. Their confidence that this disease is treatable helped me. But, I said, "I don't want to do chemo!" I looked at the treatment plan and I didn’t understand it. My brain was unable to process anything; the only thing that came to my mind was that it will take forever. My cancer journey started with a mastectomy surgery which also involved the removal of my sentinel lymph nodes and partial reconstruction (July 3rd, 2018). Later on, I had a second surgery, which was about more lymph nodes (August 3rd). After that came the chemo, the scariest days of my life. The procedure prescribed by my oncologist involved four rounds of Adriamycin and Cyclophosphamide, which were followed by twelve rounds of Taxol. After the chemo, I did six weeks of radiation treatment (twenty-four sessions), but this was like a walk in a park compared to the chemo. The fear of not being able to practice my job any longer was a scary thing. I had nightmares that I would not be able to use my fingers, which is essential in my job. I also worried about getting sick during treatment due to my weakened immune system. But the support I got from my family, friends, and medical staff helped me overcome my anxiety. For me, the worst part of my cancer journey was the day I lost my hair. I have to confess, I prepared myself in advance for what was coming, but the way I felt the minute I started to lose my hair was unreal. It hit me hard for days because a woman’s hair is her treasure. My husband showed me the bright side of wearing wigs, which is having the option of different hair colors. My advice is to have two wigs ready before you begin chemo. My meals, at that time, were based on fresh fruits and vegetables. I had a lot of fluids that helped me avoid any complications and strengthen my immune system. Also, I covered my feet and hands with ice to prevent neuropathy. Chemo brain is real! I felt disoriented, lost, and tired. So, I did tons of yoga, meditations, and I began rock painting. Let me tell you, my fellow beautiful ladies, how relaxing and rewarding rock painting is; it's like therapy. Before I had never thought that a painted rock could bring me so much happiness. Yes, it was a long, difficult journey, but honest to God I had a smooth sail. I worked every single day; I was able to have a normal life filled with lots of love from my family and friends. Right now I am still painting rocks, and I am on hormonal therapy with Tamoxifen. Every day when I wake up I thank God for giving me another beautiful day on this Earth. ~KT

I was 39 when I was diagnosed with breast cancer -Stage II infiltrating carcinoma and 49 with breast cancer -Stage IV metastatic breast cancer. It was May 2010 when my world was shattered. I had divorced my husband the previous year and felt totally free for the first time in my life. I was healthy, loved to exercise, and was eating healthy on most days. I was working as a nurse in a pediatric office in Littleton, Colorado. My son was a couple of years away from graduating high school. Life was great. I have a family history of cancer and I started performing self breast exams in my twenties. In April 2010, I felt a lump in my breast and saw a dimple over the spot where I felt the lump. As a nurse, I knew the signs and symptoms of breast cancer, but for some reason my mind wouldn't accept it. As I think back, I felt like I couldn't have breast cancer because I didn't have health insurance. After the divorce, I couldn't afford it. But God made a way. I qualified for Komen funds, which saved my life. I was blessed to have the best surgeon and oncologist on my team. They gave me all the information I needed to make an informed decision. Sadly, I was miles away from family and friends, so I went into deep prayer and made the decision to have my breasts removed. As I sat on the exam table and told the surgeon my decision, I felt strong and sure. But as soon as he exited the room, I broke down and cried. It wasn't fair. I was the girl who raised awareness for breast cancer survivors, and now I was that girl. Ironically, five years later, my sister would insist that I write a book detailing my journey. I hesitated in doing so because it was my personal business, but she hit me with, "It's about giving God the glory." So, I self-published the book, "Seriously God, Am I That Girl?" Writing the book ended up being my therapy. I poured out all the details regarding chemotherapy (its side effects) and my reasons for stopping it and stopping hormone therapy as well. I completed two of the four rounds of chemo and stopped tamoxifen after a few months. On chemo, I felt like I was having a heart attack, and regarding tamoxifen, I just didn't like the side effects. I did end up removing my ovaries. In 2012, my PET scan was clean, and I moved to Atlanta to be closer to family. I found an oncologist and in 2015 was given the "all clear." I was determined to take advantage of my second chance at life. I worked and traveled to many places that were on my travel list. Since I loved traveling so much, I became a travel nurse. Again, life was great! I took an assignment in Dallas and Tucson. While in Tucson, I had this feeling of wanting to help women in a different way. I was ready to leave nursing after twenty years and try something new. I love my family, but moving back home was not part of my life plan. We have our plans and God has his. So, in September 2019, I moved back home to Mobile and opened a painting studio, Her Timeout, in January 2020. The stress I was under opening this business saved my life. A lymph node in my neck began to swell. This one symptom would lead to an urgent care visit, PCP visit, scans, oncology visit, and a biopsy. The result, stage IV breast cancer. I was ready for God to take me. I couldn't. I didn't deserve this. I was a good person and this wasn't fair. My family was so concerned that they threatened to come break into my apartment if I didn't come out. After two weeks, I started chemo. My new oncologist had read my old medical records and he was ready for me. No quitting. He was stern. He told me that he could treat me, but I had to do my part. I wanted to see my future grandchildren, so I put on my big girl panties. I was ready this time for the side effects. I started taking daily vitamins, B vitamins, plain, coconut milk yogurt, raw garlic, and drinking plenty of water. I meditate and do yoga. This time around, I'm grateful to be home with family and friends. Instead of writing another book, as they suggested, I decided to blog about this journey. The title, of the blog is "Her Timeout." I honestly believe that when God gave me this name back in Tucson, it was not intended for a painting studio, it was his way of getting my attention to slow down. He was trying to save my life. What's next? I have to complete 6 rounds of chemo; less if my scan comes back clean, per my oncologist. Then monthly, hormonal injections until my oncologist "says so." I'm ready to walk in divine health because I deserve the best. I'm focused on healing my body and getting back to life! There's a big world out there to explore. God placed a work in me when I was born, and I must continue my journey to fulfill my purpose. I have too many dreams to give up!

We all wear many hats and have various titles that we identify with. Doctors, moms, caregivers, teachers, coaches, friends and the like. Following a breast cancer diagnosis, we also identify with terms like breast cancer survivor, thriver, warrior, etc. It becomes part of our story. But let's not forget this powerful network we have created. We are lawyers, marketing gurus, real estate agents, and florists. This is what community is all about! We are here for each other - not just through cancer, but throughout life. Joe's wife Fran was diagnosed with breast cancer a few months prior to me. She became my guardian angel. She shared stories about her experience that I still hold onto today and fondly recall memories of a dinner we shared together at an Italian restaurant in Manhattan. She called me a few days before my surgery to give me guidance on pain management and laxatives, and a few days afterwards to make sure I was doing OK with milking the drains. The point is, breast cancer is a disease but it's not our entire life (though I know it can certainly feel that way at times). Fran, and her husband Joe, and I stay in touch. We exchange holiday messages, updates about kids and family, and updates on the SBC organization. Below is one of the notes I received this week from Fran and Joe. We all have information to share for the greater good. The following is from Dr. Irene Ken, whose daughter is an Assistant Professor of Infectious Diseases at Johns Hopkins University. • The VIRUS is not a living organism, but a protein molecule (DNA) covered by a protective layer of lipid (fat), which, when absorbed by the cells of the ocular, nasal or buccaneer mucosa (mucus), changes their genetic code (mutation), and convert them into aggressor and multiplier cells. • Since the VIRUS is not a living organism but a protein molecule, it is not killed, but decays on its own. The disintegration time depends on the temperature, humidity and type of material where it lies. • The virus is very fragile; the only thing that protects it is a thin outer layer of fat. That is why any soap or detergent is the best remedy, because the foam CUTS the FAT (that is why you have to rub so much: for 20 seconds or more, to make a lot of foam). By dissolving the fat layer, the protein molecule disperses and breaks down on its own. • HEAT melts fat; this is why it is so good to use water above 77 degrees Fahrenheit for washing hands, clothes and everything. In addition, hot water makes more foam and that makes it even more useful. • Any ALOE mixture with alcohol over 65% DISSOLVES ANY FAT, especially the external lipid layer of the VIRUS. • Any mix with 1-part bleach and 5 parts water directly dissolves the protein, and breaks it down from the inside. • Oxygenated water helps long after soap, alcohol and chlorine, because peroxide dissolves the virus protein, but you have to use it pure and it hurts your skin. • NO BACTERICIDE OR ANTIBIOTIC WORKS. The virus is not a living organism like bacteria, so antibodies cannot kill what is not alive. NEVER shake used or unused clothing, sheets or cloth. While the VIRUS is glued to a porous surface, it is very inert and only disintegrates after… - 3 hours on fabric and porous materials - 4 hours on copper and wood - 24 hours on cardboard - 42 hours on metal - 72 hours on plastic • If you shake the VIRUS by using a feather duster, the VIRUS molecules float in the air for up to 3 hours, and can lodge in your nose. • The VIRUS molecules remain very stable in external cold, or in artificial as air conditioners in houses and cars. • The VIRUS also needs moisture to stay stable, and especially darkness. Therefore, dehumidified, dry, warm and bright environments will degrade it faster. • UV LIGHT on any object that may contain the VIRUS breaks down the VIRUS protein. For example, to disinfect and re-use a mask is perfect. Be careful, the VIRUS also breaks down collagen (protein) in the skin. • The VIRUS CANNOT go through healthy skin. • Vinegar is NOT useful because it does not break down the protective layer of fat. • NO SPIRITS, NOR VODKA, work. The strongest vodka is 40% alcohol, and you need at least 65% • The more confined the space, the more concentration the VIRUS can be. The more open or naturally ventilated space, the less VIRUS concentration. • You have to wash your hands before and after touching mucosa, food, locks, knobs, switches, remote control, cell phone, watches, computers, desks, TV, etc. And when using the bathroom. • You need to moisturize dry hands because of so much washing, because the molecules can hide in the micro-cracks. The thicker the moisturizer, the better. Keep your nails short so that the VIRUS does not hide there. _ _ _ _ Thank you so much Fran and Joe for your continued support and inspiration as we navigate the labyrinth of breast cancer thrivership!

It has been quite alarming reading about the current health pandemic (COVID-19). There is fear, gratitude, anxiety, and acceptance. There are plenty of emotions to go around in light of this global health pandemic. What's important to remember is that you are not alone in this. In fact, the entire world is in this with us (and us with them). They may not have breast cancer per se, but they may be dealing with an elderly parent. They may be dealing with a child who has asthma, they may be dealing with additional underlying conditions that we don't even know about because they are "invisible" illness. When I first told my parents that some of my friends are being asked to postpone surgery, I don't think it actually resonated. Breast cancer is a piece of this health pandemic and everyone is on edge. But breast cancer is very much our world! It's what I read about, it's what I research, it's what I seek out on social media. So when I tell my parents that some of my friends need to delay treatment, what I am really saying is, I'm scared, we’re scared. I've always said we need to advocate for ourselves, to push for mammograms, to get second opinions and now, all of a sudden, this is on pause? All of a sudden is the message that I am getting, is that breast cancer treatment is no longer considered "essential”? No. Not at all. Yes, that's my gut reaction, my blood boils, and I cannot understand why we would delay removing a tumor in our breast. But thank goodness, after researching and reading the guidelines and hearing all of your questions, I actually feel quite confident about the state of breast cancer and COVID-19. The medical professionals and reliable and trusted medical organizations have moved swiftly to address our questions, concerns, and have published guidelines and recommendations for how we can navigate this unprecedented time. This is what I found based on my scouring the sites of the Society of Surgical Oncology (SSO), the American Society of Clinical Oncology, (ASCO), the American College of Surgeons, and the American Society of Radiation Oncology (ASTRO). Please note that this information is not meant to substitute professional medical advice nor supersede individual physician judgement, institutional policy or guidelines. The American College of Surgeons suggest recommendations as follows based on priority categories: Priority A: Patient condition is immediately life threatening, clinically unstable. Priority B: Patient situation is noncritical but delay beyond 6–8 weeks could potentially impact overall outcome. Priority C: Patient’s condition is stable enough that services can be delayed for the duration of the COVID-19 pandemic. The Society of Surgical Oncology has provided these guidelines specific to breast cancer. What I find fascinating about the guidelines and the disruption to the typical sequence of treatment is that endocrine therapy is now being offered in a neoadjuvant setting. That is to say, if your tumor is estrogen driven, you may be asked to take Tamoxifen or an Aromatase Inhibitor in advance of your surgery. This is to protect you from needing to come to the hospital; yes, it will delay surgery, but given the situation, would you really want to expose yourself to COVID-19 when endocrine therapy could be a benefit? What excites me about this opportunity is that I am hopeful studies will emerge to investigate the effectiveness of endocrine therapy vs chemotherapy in the adjuvant setting and could potentially decrease the need for chemo for those diagnosed with breast cancer. (Of course, may other factors would need to be considered, but still a win in my book!) According to the American College of Surgeons, there are of course situations that need immediate attention: Neoadjuvant patients finishing treatment Clinical Stage T2 or N1 ERpos/PRpos/HER2 negative tumors*† Triple negative or HER2 positive patients*† Discordant biopsies likely to be malignant Excision of malignant recurrence *In some cases institutions may decide to proceed with surgery versus subjecting a patient to an immunocompromised state with neoadjuvant chemotherapy. These decisions will depend on institutional resources. †Encourage use of breast conserving surgery whenever possible. Defer definitive mastectomy and/or reconstruction until after the COVID-19 pandemic resolves, provided radiation oncology services are available. †Autologous reconstruction should be deferred. According to ASTRO, "patients with rapidly progressing, potentially curable tumors may outweigh the risks of COVID-19 exposure/infection, but patients receiving radiation for symptom control or at low risk of harm due to alteration of schedule for radiation treatment visits could potentially be safely delayed.  Patients should check with their radiation oncologist to determine the most appropriate course of action for their treatment." According to ASTRO, "patients with rapidly progressing, potentially curable tumors may outweigh the risks of COVID-19 exposure/infection, but patients receiving radiation for symptom control or at low risk of harm due to alteration of schedule for radiation treatment visits could potentially be safely delayed.  Patients should check with their radiation oncologist to determine the most appropriate course of action for their treatment." ASTRO states, "The overarching goal is to reduce the risk of transmission of COVID-19 and to allow cancer care to continue for those most likely to benefit.." What's most important is to speak with your oncologist. It is important to recognize that this is a global issue and each hospital and institution is unique with their own set of guidelines. As the Lancet Oncology mention, regarding regulatory impact, "the US Food and Drug Administration has issued guidance on managing clinical trials during the time of COVID-19, as have the US National Cancer Institute and the European Medicines Agency (EMA). If you have specific questions you'd like us to investigate, please email info@survivingbreastcancer.org.

COVID-19: How are you dealing with it? “Change is the only thing that is constant” The recent turn of events re: COVID-19 has impacted us all throughout this community. It poses an upheaval in our daily routine and drastic changes in the way we cope with our breast cancer survivor/thriver journey. I would be lying if I said that COVID-19 has not been the most predominant topic on my mind. Everyone is talking about it. They are tweeting about it. And in my case, I am even dreaming about it. It is proving quite overwhelming, and I can only imagine even more so for our breast cancer community members who are immunocompromised and are at a higher risk if exposed to the virus. Controlling our treatment journey and having a set routine is our way of feeling a sense of control in our life. With COVID-19, we have been asked to uproot any sense of control and throw it out the window. Questions to ask your oncologists Are you going to be getting your treatments? Is it safe to go in for the treatments? Are my team of doctors going to be affected and if so will I be exposed to the virus because of them? Are my medications going to be delayed? These are some of the questions that might be crossing your mind. These are all valid and relevant. Call or email your oncology team and have them assess the situation and give you a clear contingency plan if you do not have one in place already. It is most important to be calm and have a clear head when talking to your team. Write down your questions and work your way through them when you get in contact your doctors. Throwing ourselves into work, or creating a private space to meditate while the rest of the family is at work or school is some of the ways we gave ourselves a break from dealing with cancer treatments, setting up appointments and paying those God awful expensive bills. But that has all changed. Right now, we must work from home, and it is hard to constantly have the entire family under the same roof 24/7! Now, the mental toll this is taking on us and will take on us, is going to be something we cannot choose to ignore. So, it is important to prioritize your mental health as well. Being cooped up indoors all day is detrimental to your mental and physical health. You will most likely see and feel some symptoms of cabin fever (a loose term to address the condition of being isolated from society for too long). Be prepared to feel bouts of depression, irritability, and change in your diet and sleeping pattern. They all stem from boredom and overthinking. Seek counsel and voice your concerns to your family and therapist if you can. It is better to let it out, then to keep it in. So, what can we do? Step into the sun once or twice a day for about 20 mins each time. The Vitamin D that you get will not only boost your immune system but also improve your mood. You could take a small lap around your block or step out into your patio or simply stand near the window which lets in the most sunlight. Try to engage in the activities that you have done before but from the comfort of your home like doing home workouts! You could do Tik Tok dances with your kids! Bring back old hobbies (I have started baking!) and also maybe use the time to work on that project that you may have put on the back burner. Eating healthy can also pose to be a struggle. The markets are being wiped out, with people panic buying, and hoarding. But, there are still options such as your local Asian supermarkets (Yes, they are fully stocked!), your local convenience store (Support local businesses!) and most restaurants are still delivering (There is a no-contact option!). It is more troublesome but in times of change, a little un-comfortability is to be expected! The right way to address this pandemic is to act as global citizens. Each of us has a role to play in fighting this virus. Stay home, stay hygienic, and help to flatten the curve. If you are younger (the early 20s to late 30s) and see your friends not engaging in self-isolation, do your best to educate them on how they are placing you and others with preexisting conditions at risk. We have a social and moral obligation to protect our society. Keep in your prayers, the hard-working doctors and nurses who put themselves and their families at risk each day as they help combat this pandemic. Do not forget the social workers, your waste collectors, grocery store workers, janitorial staff who all are still working around the clock. We will ride this out together and we will be the better for it at the end. Here is a list of books for your reading consideration: Meditations in an Emergency by Frank O’Hara The Japanese Lover by Isabel Allende The Hate You Give by Angie Thomas The Wasted Vigil by Nadeem Aslam The Lighthouse by PD James Babel Tower by A.S. Byant They are all available in PDF versions on Amazon 😊

By Veronica Marie I had been feeling a rather strange pain in my right breast for a few weeks back in the summer of 2017. I didn’t think much of the pain at first. In my mind I thought it was from the towel I used wrapped around myself, perhaps I was wrapping it too tight! I hadn't been to the gyn for a few years so an examination was in order. I had started a new job and wanted to be successful. I was taking care of everyone else and not myself. I finally went to a mobile mammogram van which was on-site at my new job. I can still hear the technician say she felt a lump in my breast. Needless to say, I was devastated because now I had to go for further testing. I felt alone because I was alone in this big New York City. Over the next few weeks, I would undergo more tests, a sonogram and finally a biopsy. I would go to a breast specialist only to have them blurt out that you have cancer, all before a biopsy was performed. It was discovered that I had two pea sized lumps in my breasts. The diagnosis was Stage II breast cancer. I was 1 in 8! You know one out of 8 women will be diagnosed with breast cancer. No not me, I couldn’t be a statistic. I had witnessed my beloved father succumb to lung cancer, as well as my brother who would perish from multi myeloma. I am thankful for all the people that helped me along the way. One day as I was walking down the street I ran into a very good friend I had lost touch with. A few weeks later she would become my closest confidant and she even recommended my surgeon to me. She was there when the doctor said those three horrific words, “you have cancer”! The saddest thing she said to me is why are you crying? I needed to cry and grieve as there was no history of breast cancer on my maternal family side. We did have a history of female problems ranging from difficult menstrual periods, endometriosis, and fibroids. On January 3, 2018 I was officially diagnosed with breast cancer. I wished there was a treatment facility, you know like a one-stop shopping facility, to go to but there was not. The most difficult part of my journey was that my doctors were scattered. I needed an oncologist, a plastic surgeon and a radiation specialist, plus my surgeon! This was difficult because my Sister and Mother all lived out of state. How was I going to get through this chapter in my life? I found a way to cope after I dried my tears. It was like I went through the five stages of death. I cried a river of tears; I was mad at God for some reason and I had no control. My old gyn doctor had retired, but in the interim he said it was just a cyst! I felt a sense of relief which only lasted for 24 hours. Next step – Surgery The entire month of January I spent meeting my team of physicians and traveling all over Queens. I called Memorial Sloan Kettering for advice about the BRACA gene, and taking chemotherapy, however they never returned my call. I went out on sick leave and had the surgery. I was told to be at the hospital at 7am. In order to prepare for the surgery, I had to undergo some tests that morning. I wish my doctor had informed me how hard this day would be. It has been 4 months since my mammogram and so many other tests in between. I had to drink a silver potion in order for the technician to see the tumor. I sat or should I say I leaned forward in a chair like concoction for 22 minutes, and was unable to make even the slightest move. So, when I was wheeled into another x-ray room on the morning of my surgery I was horrified when she said I had to have four incisions in my breast. No one told me. Thank goodness she was a kind and gentle technician and made me feel calm. My Sister and best friend were right outside the door, but we were locked in the room. I needed just one more hug. I just kept saying to myself they are cutting my breasts off why do they have to put me through this, I.e., four needles into my breast and no pain medicine. In the last decade I have had two or three surgeries and had to walk into the operating room on my own. A long time ago one was wheeled into surgery on a gurney, tired and sleepy, and a little mellow from medicine. Well not anymore. So, I had a nice dressing gown on that was attached to a warming heater. After that was detached a nurse walked with me into the operating room. I also want to say that I had a wonderful anesthesiologist who put me to sleep like a baby. I woke up about five hours later to see my sister and best friend. After the recovery room I went to my room and thus began my journey at becoming cancer free! After surgery you are told that you are cancer free. However, I wish someone had told me this fact earlier in my journey. My Sister stayed with me for a week and we remained in constant contact by phone, text messaging and email. I consider myself to an extraordinarily lucky woman now that I have survived and can make that statement. I don’t know how I endured all those invasive tests, and the breakup of a relationship, but I did. I went to every chemotherapy session without fear or too much emotion. I have come a long way in my journey from cancer statistic to a self-proclaimed God-fearing woman. I want to be a survivor, and I think I am! Listen to Veronica's interview on the podcast, Breast Cancer Conversations where she shares her experience leading up to a breast cancer surgery and what she wishes she had known.

I never thought I would get breast cancer. In fact, the idea never crossed my mind until I felt a lump. I hear this story time and time again where women are "too young" to have breast cancer. However, according to an article published in October, 2019 from Yale Medical, 11% of women under the age of 45 develop breast cancer. In fact, breast cancer is the number one cancer among women between ages 19 and 39. Interestingly, the National Breast Cancer Foundation posits that 15% of breast cancers are triple negative breast (ER/PR and HER2 Negative) and typically occur in younger women. While we can google and read about triple negative breast cancer, we thought we'd take time today to speak with two women who have been diagnosed with TNBC in the 20's and 30's and have them share their first hand experience. SBC: Sara and Caitlin, thank you so much for taking the time and sharing your experience with triple negative breast cancer. As two women diagnosed at a young age, I would like to share with our readers a bit more about your diagnosis, your treatments, advice you have to others who are recently diagnosed and how you are doing now! Let’s dive in. Tell me a bit about your diagnosis, type, stage, age when diagnosed? Sara: I was 27 years old; 2 months shy of 28. I was initially diagnosed at stage 2a (no lymph node involvement); triple negative. This was the lump I initially found and got checked out. An MRI revealed a tiny spot in my other breast, which was biopsied. This was stage 0 due to size, but was not completely triple negative- a very low amount of one of the hormones (I can't remember which!) Treated as triple negative and the tumor board revisited my case after treatment and concluded I did not need hormone therapy for the little bit that was present. I also tested positive for the BRCA1 genetic mutation. Caitlin: I was diagnosed at age 30; 1 month before I turned 31. I Diagnosed with triple negative, stage 2b, grade 3. SBC: Did you have Chemotherapy and if so, which drugs were you on?: Sara: Yes, 16 rounds of chemo. I first did 12 rounds of Taxol, with carboplatin every 3rd treatment. I requested a few weeks off after finishing Taxol and starting the next round of chemotherapy and my oncologist was fine with this. Then, I started Adriamycin and Cytoxan (A+C) also known as "the red devil" which I completed four rounds, once every 2 weeks. Caitlin: Yes, I was on chemotherapy as well. Similarly, I had 4 rounds Adriamycin and Cytoxan followed by 4 rounds Taxol SBC: Did you have Radiation? If so, how many weeks? Sara: No. Caitlin: Yes, 5 weeks plus 1 extra boost week (30 rounds total). SBC: Radiation can be a bit confusing. We speak with Dr. Jimenez to get more information about radiation and what a boost week is. See short video below: Were you on any experimental trials? How did they go? Sara: Yes. I was on an immunotherapy clinical trial. Lasted an entire year. It went okay, I didn’t have any reactions while still in chemo but a few months after I started getting a whole-body rash. Caitlin: No, I wasn’t on any clinical trials. SBC What was your experience with Adriamycin and Cytoxan plus Taxol? Sara: I used cold caps through treatment and it actually went pretty well. I probably lost about 30-40% of my hair. While I didn't completely lose my hair, it still was an emotional rollercoaster. The hair washing routine was tough and I absolutely dreaded it thinking 'will this be the day I start to really get bald spots, etc'. So not the same hair journey as many cancer patients, but still a traumatic one. I hate washing my hair to this day. Caitlin: I did cold cap also, in fact, you can hear all about my experience on the podcast Breast Cancer Conversations we did together a few months ago. What advice do you have for someone going through treatment? For example, body changes, how to cope, health and nutrition/eating habits, etc. Sara: I ate pretty healthy before my diagnosis so I didn't make a whole lot of changes. Cold capping has you hydrating extra so I drank a lot of water. Made smoothies almost daily with greens. Still ate a crap ton of sugar - I needed junk food to cope. I also started taking Biotin. I had started weightlifting seriously a few months before my diagnosis and I tried to stay with it as much as possible. Some weeks I only made it to the gym once or twice but I did my best to keep up my strength and fitness. Caitlin: Listening to body about rest is my #1 advice. Not the time to “push yourself”. I was able to fight fatigue because I was listening to my body and resting when needed. I designated down time for myself every day so that even if I felt “good” I rested to not push myself too hard. Honestly, I wasn’t the best with the health and nutrition piece. But I wasn’t the worst either. I tried to be moderate but also found a lot of comfort in comfort food. I luckily never lost flavor or had issues eating so being able to enjoy comfort food was something I often turned to. How did you fight fatigue and chemo brain? Sara: I don’t think I really fought the fatigue; just learned to accept it. I'd stay at my parents the day or 2 after chemo so I didn't have to do too much for myself those days. My mom would come by for a 'mom visit' to my apartment most weekends to help me with household stuff. I live alone so it was tough to keep up with things and take care of myself. Chemo brain is something I still deal with now; I forget things and find it hard to focus. I haven't really found anything to be helpful with this. How did you Manage with work, home, life balance while in treatment? Sara: I was lucky enough to have the capability of working remotely through treatment; that really made my life easier- in terms of demand on my time and financially. My apartment was a mess most of the time but in a clean way, if that makes sense. I'd go out with my friends when I felt up to it and I also went out on dates here and there. Caitlin: I was able to work throughout treatment, which isn’t for everyone, but it worked well for me. I enjoyed keeping some normalcy in my life. Socially I had people come visit me at home since my energy wasn’t always up for going out. What are the top 10 things you wish you knew before starting treatment/surgery (it’s ok if you don’t have 10!) Sara: 1.Wish I knew I could defer my student loans while in treatment!!!! Literally the top thing I wish I had known. 2. There are some organizations I've only found out about since being done with everything- like Ellie Fund and Joe Andruzzi fund. 3. I wish skincare and sexual health was better addressed. There are resources available for sexual health where I currently am a patient but it's kind of glazed over. 4. I am well aware that mental health plays a big part here but again, I wish this was an integrated component of cancer treatment. I guess the last 2 points were more things I'd like to see, not what I wish I knew. Honestly, I can't really think of much else! I felt pretty well informed in terms of what the plan was and we (my family and I) asked a lot of questions. A LOT OF QUESTIONS. Most of my appointments had 3 or 4 of my family members present. Very grateful for that. Caitlin: : I don’t really have a top 10 list of things that I wish I knew. I had great support. However, here is the advice I would give to someone just starting treatment: 1. Dr. Susan Love’s breast book is a great resource 2. Don’t google your diagnosis 3. It will take months, if not years post treatment, to have the energy to even start making changes towards coming back. How are you doing now? Sara: I still do most things I did before. Work, gym, go out, travel, all that stuff. But I do have a renewed sense of gratitude I think. Even on the most mundane, unexciting days. I think I definitely have PTSD from this experience, and I think this affects my daily life in a variety of ways. I think about cancer every day and have had a couple pretty real scares since finishing treatment, complete with biopsies and all. Having the genetic mutation..... I pretty much feel like there's a target on my back. I doubt this will be my one and only encounter with cancer. I'm still single and I don't really see that changing with everything that's happened; what's likely to happen again. Think my perspective on a lifelong partner has changed since I didn't have a partner through the worst time in my life. Caitlin: Since I found my lump through an at home self-exam and have made it my ongoing mission to bring awareness and education to other young women out there. I am so lucky to have found so much love, support and inspiration throughout the entire cancer community, but especially the triple negative gals!

Taxol Treatments for Triple Negative Breast Cancer (TNBC) My name is Bridget Bates. I’m 38 years old and I was recently diagnosed this year, January 3rd, 2020 with Triple Negative Breast Cancer (TNBC) Stage 3 in my left breast. Because Triple Negative Breast Cancer (TNBC) is such an aggressive type of breast cancer my doctors went forward right away with all tests and scans necessary. Let’s break it down! Mammogram: Breast Ultrasound: Breast Biopsy:Left Breast MRI: Breast Bone Scan CT Scan: Chest, Abdomen, Pelvic Biopsy: Armpit left lymph node PET Scan: Sternum MRI/Biopsy: Right Breast Brain MRI After all is said and done, but still waiting on my brain scan results, but I can say the cancer only has spread to one lymph node under my left armpit. I started chemotherapy January 27, 2020 with appointments every Monday featuring a combination of Taxol (Paclitaxel) and Carboplatin. The first round of treatment was stressful. I went in that Monday with high anxiety. Taxol Allergic Reaction My Doctors did warn me that the majority of women are allergic to their first dose of Taxol. Understandably, I was so anxious. I did become allergic within the first 30 minutes of my treatment. My hands started turning bright red. I rang the nurse immediately. Thankfully they were quick to stop treatment and flush me out and add more Benadryl to stop the reaction. My anxiety hit the roof at this time and I was going into full panic attack mode. One of the nurses asked if I wanted some lavender oil to calm my nerves. Knowing about how essential oils work wonders, I responded “Yes, Please”! After all this excitement, we decided to start up again. I was still nervous, but knew I couldn’t just give up on the first try. I can say I completed my first round somewhat successfully. Taxol Side Effects Now going on my sixth infusion, it appears to get easier over time. Of course anxiety is still there, but my lavender is never too far. I have to say I've been pretty lucky regarding my side effects from taxol. Mild nausea once or twice. I definitely can’t eat any dairy, or I will end up with nightly bathroom runs. Lol. But I feel deciding early on that I would combine holistic with my chemotherapy has definitely helped me get through my rough days. Headaches Hairloss I’m not one to pill pop, so I find natural ways to cope with the side effects from taxol. But I know if it ever gets too hard “I will give in and take a pill". Only if necessary! With the headaches, this has been more of the pill popping scenario. I've experienced more headaches than ever which I attribute to the steroids given during treatment. Taxol Hair Loss One of the hardest side effects from taxol for me has been the hair loss. I discovered my hair falling out after the third infusion. I couldn’t control it, chunk after chunk. I decided to shave the back and leave some hair on top. I will eventually shave it all, but I wear hats a lot and beanies at home. It’s wonderful to know there’s so many options on the market to help with this issue. There are so many different organizations and hospitals that give away free wigs and head accessories. If you just ask, people will help! As for now I take it day by day. I enjoy the moments I feel my best and make those days were I take a walk, get fresh air and just enjoy being around family and friends who lift me. I still have a long journey ahead: six months of chemotherapy followed by a bilateral mastectomy, followed by six weeks of radiation, but I will never give up. This girl is staying positive and strong every step of the way. Cancer isn’t me, I am me.

By Contributing Editor, Madhumitha Sabhanayagam TCHP Chemo Side Effects - What can we do? When breast cancer first entered the spotlight, the most talked-about subject, other than cancer itself, was chemotherapy. Chemotherapy, though sometimes not the most common way to treat breast cancer, is often the first option that jumps into most people’s minds quickly followed by concerns of hair loss. The side effects of chemotherapy are notorious, and in its own league, and quite rightfully so. Many of you have experienced these side effects first-hand and the toll it takes, not only on your person but also on your mental and emotional health. In recent days, I have come across several survivors discussing the aggressive side effects of the TCHP chemotherapy regiment for breast cancer treatment. TCHP Regimen TCHP is made up of four different chemotherapy drugs. Each of these chemo drugs targets cancer cells and or slows down the growth of pre-existing cancer cells. TCHP chemo is usually administered before (to shrink the tumor) or after surgery (to eliminate any rogue cancer cells). The entire chemo regiment is designed to be given in several cycles and the treatment can last anywhere from 5 to 6 months. There are follow up medications to be taken, follow up treatments, and check-ups depending on each individual’s treatment path. T - Taxotere (Docetaxel) C - Carboplatin (Paraplatin) H- Herceptin (Trastuzumab) P-Perjeta(Pertuzumab) TCHP Side Effects Because of the four-way combination of the drugs, the regiment presents a slew of side effects that can wreak havoc on an individual and their day to day activities. Some of the common chemo side effects include: · Diarrhea · Hair loss · Low white blood cells · Nausea · Fatigue · Vomiting · Anemia · Upset stomach · Constipation · Decreased heart function So why do we have side effects? It is usually because of the aggressiveness of the chemotherapy attacking cancer and in doing so, they sometimes also attack normal cells as well. For example; it may attack the cells that stimulate hair growth or the cells that release the hormone which stimulates hunger. This results in hair loss and loss of appetite. TCHP Chemo Experience The biggest overall side effect in most TCHP chemo survivors is weight loss. The regiment takes a toll on your appetite and the ability to find anything tasteful. You constantly have nausea and if you do get hungry, food tastes absolutely abhorrent. Many survivors see drastic weight loss and therefore have little to no energy to participate in their day to day activities. It is important to try and get in calories where you can, for example, nut butters are a great high protein and calorie dense option. Ask your oncology team if they can refer you to a nutritionist as well if you are having a touch time with food. But there is a light at the end of the tunnel. Oncology teams are investing more time and effort into coming up with ways to reduce the severity of side effects and keep them to a minimum for their patients. For example, for those who are experiencing extensive hair loss, there is a new method called scalp cooling. It is a mask one can wear while undergoing treatment. It cools down the scalp and in doing so helps to minimize the damage inflicted on to their hair cells. It is still relatively new, but some oncology centers have seen some success with it as well as one of our very own SBC members who shares her experience with cold caps on our podcast Breast cancer Conversations. Chemotherapy Diet Restrictions The lack of appetite, nausea and continuous vomiting can result in dehydration and loss of protein in the body. So, when one does experience it is good to note that, drinking lots of liquids is extremely important. Water, electrolytes, and soup are some great resources. It is best to avoid intensive flavors, as those could trigger nausea - so keep to simple (bland unfortunately) food. Yes, that would include eliminating spicy foods, greasy and fatty foods, very sweet and sugary foods. For some, ramen, oatmeal, lemons, sour patches, and apple sauce were the only things that they could eat. Try eating several small meals throughout the day to avoid large size meals that may be too overwhelming while going through TCHP chemo. Doctors do advise to consciously include protein into one’s diet. Focus heavily on milk or a plant based milk high in protein, eggs, beans, and cheese as they provide the protein to build back the protein you will need to replace the cells you might have lost. (Check out our short list of managing chemo side effects here and our recommendations on vitamin D and calcium. Emotional Effects of Chemotherapy There is also an emotional and psychological effect that is evident when undergoing, TCHP chemo. You tend to go through bouts of helplessness and extreme depression. This is normal and it is important to note that you are not the only person who is experiencing these effects. A good way to combat this is to invest in therapy and also to take some sort of control. Being out of control is the biggest stressor for most cancer survivors. Therapy can take on a variety of forms. Sometimes it is in the traditional sense of speaking with a counselor or social worker. Sometimes, it could be taking a walk with a friend or doing some light yoga and breathing exercises at home. It's important to carve out time for yourself. Be in charge of all the knowledge your oncology team presents to you, have your medications ready and the aid tools you need to combat the side effects. At the same time, ensure that you do still bring a sense of normalcy to your life by engaging in hobbies and activities that bring you a pleasant distraction. Battling cancer is a rough path and it is not a straight path either. It is filled with ups and downs and with several hurdles that we have to overcome. There are however tools to aid us. It is comforting to know that there are many support groups and forums at local oncology centers and online that offer great advice and programs to help soften the blow of cancer. Voice your concerns and do not be afraid to be heard. TAKE UP SPACE and BE SEEN. Do not suffer alone..

By Editorial Contributor, Sue Cimino I recently attended a health and nutrition seminar by Dr. Sheryl Duchess, N.D. Although I knew the importance of Vitamin D, I was unaware of the correlation between Vitamin D and Breast Cancer. Research suggests that women with low levels of vitamin D have a higher risk of breast cancer. Vitamin D may play a role in controlling normal breast cell growth and may be able to stop breast cancer cells from growing. Testing your Vitamin D levels will help you understand your individual requirements. Ask your doctor to test your vitamin D levels next time you go in for bloodwork. When your doctor orders lab tests to check your vitamin D levels, they are measuring your calcifediol (25D) which is the metabolized form of vitamin D once absorbed into the bloodstream. Over the last decade recommended levels of vitamin D has evolved. 35-45 ng/ml is sufficient but anything under 35 ng/ml is considered insufficient. For peak health 45-70 ng/ml is required. However, many individuals are not meeting these levels to support optimal health due to several factors such as lack of sun exposure, increased use of sunscreens, and health of your gut. What Does Vitamin D Do? Vitamin D plays an important role in cognition, bone health, heart health, and immune support. According to breastcancer.org, it also helps the muscle and nervous systems function properly. Vitamin D helps the body absorb calcium, which is essential for good bone health. I wrote about the importance of calcium in last month’s blog. How To Get Vitamin D? Vitamin D comes from two main sources: From sun exposure and from food. Additionally, supplements are another way to boost your intake. Much to my surprise Vitamin D is not a vitamin at all. It is a Pro-Hormone, 1 of 24 nutrients needed for survival. Most vitamin D is made when an inactive form of the nutrient is activated in your skin when it's exposed to sunlight. Smaller amounts of vitamin D are in fortified milk and other foods, fatty fish, and eggs. As more and more people spend most of their time out of direct sunlight or wearing sunscreen when they are in the sun, vitamin D production from sun exposure is limited. I am sure, as are many of you, finding the right aromatase inhibitor that did not make me feel and move like a 90-year-old woman was a challenge. What I learned was a high-dose vitamin D relieves joint and muscle pain for many breast cancer patients taking estrogen-lowering drugs, according to a new study from Washington University School of Medicine in St. Louis It was Rastelli's colleague, Marie E. Taylor, MD, assistant professor of radiation oncology, who first noticed that patients on aromatase inhibitors who experienced this pain found some relief from high doses of vitamin D. "High-dose vitamin D seems to be really effective in reducing the musculoskeletal pain caused by aromatase inhibitors," Rastelli says. "Patients who get the vitamin D weekly feel better because their pain is reduced and sometimes goes away completely. This makes the drugs much more tolerable. Millions of women worldwide take aromatase inhibitor therapy, and we may have another 'tool' to help them remain on it longer." In another study from The Department of Internal Medicine, University of Kansas Medical Center, Kansas City, KS, Vitamin D deficiency and insufficiency may contribute to musculoskeletal symptoms and bone loss observed in women taking aromatase inhibitors (AIs). This study was conducted to determine the prevalence of suboptimal vitamin D levels in women initiating adjuvant Letrozole for breast cancer and to determine whether supplementation with 50,000 IU of vitamin D3 weekly could reduce musculoskeletal symptoms and fatigue in women who have suboptimal vitamin D levels. What is the difference between Vitamin D2 and Vitamin D3? When people talk about vitamin D it can be confusing. Have you ever noticed that you cannot walk into your local pharmacy and pick up an over the counter vitamin D? They are actually broken down into vitamin D2 which mostly comes from plants or what is used in fortified products like cereal while D3 comes from animal products like salmon, and egg yolks or fish oil. If you are deficient in vitamin D, your doctor may prescribe the 50,000 IU capsules which are prescription only. This high dose is not for long term use but it’s safe to take for several consecutive weeks until your vitamin D levels are back in the normal range. The American Association of Clinical Endocrinology and the Vitamin D counsel regard Vitamin D3 supplementation necessary to support healthy bone mineral density. Vitamin K2 is a fat soluble and supports the normal delivery of D3 to the bones, as well as promotes healthy arteries. I found the best Vitamin D3 containing 5000 IU per serving and the necessary Vitamin K2 for proper delivery was in an Isotonic format. I spoke last month about the superior delivery system that Isotonic provides. Taking my Calcium and Vitamin D3 with K2 in an isotonic format has truly made a big difference in my quality of life.

By Contributing Editor, Madhumitha Sabhanayagam “Attention to health is life's greatest hindrance." Plato “Money can't buy happiness.” “Money will not guarantee you health.” We have all heard these quotes and even we are guilty of speaking so. Yeah, these are true quotes, but having money and not having to worry about how “am I going to afford my next cancer-preventing/remediation treatment definitely would help me smile a little bigger, and sleep easier at night. We all know how expensive cancer can be to deal with. What we fail to realize and ignore at our peril is the adversarial effect of the financial burden inflicted on cancer patients on top of all the other burdens they carry. The negative effects of expensive treatment have warranted the coining of a new buzz word; financial toxicity. Financial toxicity is the emotional, mental, physical, life-threatening financial stress caused by cancer treatment costs. Dr. Ryan Nipp (catch our podcast with him coming out on Monday.) Financial toxicity can linger for years, and represents a most vicious cycle. For example: To make appointments, we may be required to miss work, we may have to pay for daycare for the children to be watched while you are at radiation sessions, or you may have to cover travel costs.  In some cases, your cancer could render you unable to work. Then you have to eat healthily. And we all know how expensive eating healthy can be. (How is a salad, $7.00 and a cheeseburger $1.99?).  This occurs during the treatment phase and then there is post-treatment care. You still have to get yearly check-ups.  You still have to keep up with post-cancer medications.  And you still are eating healthy. The job you were once capable of performing or holding before,  may not be yours, or you may not be capable of performing. Financial stress can also take a toll on families.  It can strain relationships and cause changes in family dynamics. All of this can be hard to navigate and untangle on your own. There are many marginalized communities that do not have the access to gain knowledge about financial toxicity Who inevitably get swamped with bills at the end and are left with crippling debt. Dr. Nipp, advocates for talking to your treatment team about finances even if you feel like you are not experiencing financial toxicity. To some it is a prestige issue, to some, it is a lack of knowledge and to some, they don't know what their finances are because they are not the breadwinner of the family. Talking to your treatment counselor could help you figure out alternatives to help reduce the toll on your finances. For example, based on your prognosis, you could come in bi-weekly instead of weekly, your doctor could prescribe an alternative medication so that your insurance can cover it. These are some of the areas we could start with. A lot of the time, opening the topic up with your counselor may help them ask the right question to drive towards a proper, economic solution to the problem.Financial toxicity is still fresh on the scene today. It is a topic gaining more momentum and thus more research is being done to study the phenomenon and how to best assist patients to combat it. A Cancer prognosis is no easy thing to deal with, but the best way to make sure you stay ahead of your finances is to be honest with yourself and your team. They are there to help.

Last week I shared a personal post in our newsletter where I called out the person I was before cancer, and who I have become after cancer. The post was short, but basically, even 3 years after my initial diagnosis, I am still processing and coming to terms with my body. There is an important factor here we don't often talk about and that is mental health. When you hear the words you have cancer, yes, you know you are going to go through physical hell but can we talk about the mental turmoil we experience? You all responded to the call: Andrea spent a year trying to hold on to who she was pre diagnosis and surgery. She was leaner and more muscular. Then her lungs partially collapsed and she just couldn’t. Aromatase inhibitors have changed how her body works. Having zero access to estrogen means making muscle and maintaining it is hard. All Andrea knows is that she has to move significantly EVERY day for a number of reasons: Andrea states: My body needs the exercise to help maintain my mood. Exercise is the only natural mood stabilizer and it only works if it’s consistent and over time. My joints benefit from daily movement. Finding novel ways to move is fun, whether it’s a Zumba or burlesque class. It helps maintain a steady weight especially when I do weight lifting. Meditation is also important. Even 10 minutes of mindfulness is important. She gives herself goals like training for a half marathon, or to improve her 1 mile swim time. Having goals keeps us focused on what’s important. For her its always the journey and not just the day of a race. Andrea, what's your one great piece of advice for others going through breast cancer right now? "Talk to older women about what they do for aching joints, sore muscles and how they maintain their muscle. It is a privilege to learn from them. I hope to be old too one day. Learn what nourishes your now menopausal body. It’s less and different from what it may have been before." Brookshire's first primary breast cancer diagnosis was in 2004. She felt immediate denial and called her brother to ask his doctor friend how they determine the tumor to be cancer; was it by a person in training looking in a microscope and saying, “It looks like cancer to me?” Brookshire wondered if she was in the low percentage of false positives-not realizing at the time she had 5 aunts who had had breast cancer and were of the generation that the “cancer” word was never said. Her second primary breast cancer on the opposite side was discovered in 2006 (each found on mammograms in the same month.) Having fallen from a ladder, Brookshire was still on crutches when she was called in during lunch hour to the physician’s office. A nurse opened the door to the waiting area, and seeing her on crutches exclaimed, “Oh you have that, too!” Brookshire felt this to be a mentally taxing manner to learn you have cancer! Brookshire silently thought, “I guess this means I really did have cancer the first time.” Sarah is also 50 lbs overweight and is trying to navigate menopause after a total hysterectomy. She has the BRCA1 gene mutation, and has stopped taking Letrozole because the side effects were horrendous. "I felt like I was a very unhealthy 90 year old woman" she exclaims. Sarah had been active, healthy and have spent her life outdoors and, like so many of us, she is always looking for the silver lining. After she stopped taking Letrozole, she was positive that she would feel better, work out and loose all the weight. Nope!! Sarah laments that the weight gain continues and she still has horrible pain in her feet and ankles. The mental health aspect is one that she has not addressed. She is strong. She has always been healthy. She has support. She's got this! Cancer treatment for her was a breeze compared to navigating life as a survivor. It’s tough. It takes effort and awareness every single day. The mental health component is one that is real despite spending most of her days ignoring that component. Sarah is a paramedic and nurse and has been involved in emergency medicine as a first responder for over 20 years. She has seen things that are oh so traumatic for so many people. She states, "My mind and body holds trauma, I understand trauma. I put my work trauma in my “work box” in my brain. I didn’t put cancer in the trauma category. OMG! Really???? How did I not know cancer is trauma??" It is turmoil, it is scary and Sarah has picked herself up and carried on. Sarah, how has being less active, less healthy, less strong, less lean affected your mental health? "I believe it takes its toll and it is easy to discount. As I carry on and learn to live as a survivor and live and thrive in life every day, I strive to learn to be more aware about my most recent trauma. Our bodies and our brains hold trauma and we pay the price in our every day lives. At this point in my life I want to understand and be aware of how cancer changed me, how it has affected my mental health and be real with that. I want to sit in the fire with that, I want to understand because after all, I had surgery and chemo and medications to get cancer out of me. I want to address the trauma so I can let go of it and let my mind and my body heal completely. It’s a journey, one that will continue to teach me throughout life with all the bumps and all the joys."

By Donna Barrett I am a breast cancer survivor. I have been cancer free for two years. But it’s been a lonely, scary and fearful two years. While my mastectomy was able to remove the tumor and all signs of cancer, my journey did not end with that first surgery. I was never a breast girl. Since my teen years, I’ve always been a very tall, very skinny, lanky girl. My breast size was an A cup, attempting to be B’s as I grew, but failing miserably. I learned to accept my small breasts early on. I embraced fashion and style that fit my long, lean, flat features. I could proudly rock a deep-V cut top or dress that would make J-Lo proud. When I gave birth to my daughter, I found new respect for my breasts as I embraced the miracle of being able to nourish my newborn with mother’s milk. Breast feeding was never easy for me, but it became a necessity. When we discovered my child was allergic to all forms of formula, cow, goat, soy, I was the mommy milking machine. I fed and pumped the white gold until she was 18 months old. When the milk was gone, and she could sustain herself on other calcium rich natural foods like broccoli I was grateful to return to my little A cup breasts. Fast forward to Indian Summer of 2017. Now in my 50’s, while my style was age appropriate, I could still wear a bikini with pride. This awareness and respect for my body and my tiny breasts, is how I was able to save my own life. Only 11 months after an all-clear mammogram, it was when I was removing my bathing suit in the bathroom, when I noticed in the mirror, a one-inch round discoloration under the skin of my right breast. Upon closer examination, it felt like a cyst. It seemed to appear out of nowhere. I didn’t panic. It was just a cyst, I thought. However, I immediately contacted my OB/gyn office and requested to move up my previously scheduled annual exam. I even pressed to see if someone could see me the next day. I’m forever thankful, they did squeeze me in to see their Physicians Assistant. While I was in that office for an exam, this alert PA was able to schedule a mammogram at the Swedish Breast Center in Seattle that same morning. The mammogram results were significant so that they scheduled a biopsy for that afternoon. Within 48 hours of my noticing this dark discoloration on my breast in the mirror, I got the diagnosis: Stage 1A Invasive Ductal Carcinoma in Situ. Invasive Ductal Carcinoma is the most common form of breast cancer. Common? Believe me, hearing the word, carcinoma, does not feel common. It is unfamiliar. It is frightening, like the shadow of death just did a fly over. Beyond the fear, this was my own body attacking me and this becomes so personal, I’ve never felt so incredibly alone. I’m a planner, and so I began my plan of attack. Like a “World War Z” zombie virus, I needed to get this cancer cut out of my body as soon as possible. Meeting with the breast cancer surgeon, I was given options. Option one was lumpectomy plus lymph node biopsy, then 6-8 weeks daily radiation and chemotherapy pending lymph node results. Option two was single right mastectomy with no radiation and the lymph nodes could be taken during the same surgery. I was also offered that an implant could be inserted during same surgery directly after the mastectomy. As a multi-tasker by nature, this was an option I liked and so I took it. The next part that was even more stressful than the diagnosis was waiting for the surgery. That was the longest 7 weeks of my life. I never asked, but I guess when your “only” Stage 1, there isn’t any rush to the operating table to save your life? I politely didn’t ask, and just assumed this was the norm. I’ve now learned, that with a cancer diagnosis, never assume and don’t be afraid to ask questions. I had no experience with this and in my own personal head space, I couldn’t even think of who to ask for advice. I did the Google everything about IDC. Read every page of the National Breast Cancer web sites, Mayo web sites, WebMD and more. What I didn’t know to ask the surgeons is where they would do the incision to remove my breast? When you do a mastectomy, what tissue remains intact? I know the answers now. My tumor was on the very top of my breast right next to my nipple. They cut the incision diagonally across the main part my breast making for a highly visible, 6-inch slash across my breast. The implant used was the perfect size to match my remaining left breast. However, as the skin was stretched over that “perfect” implant, it was a tight fit. After the surgery, I was given nitro-glycerin cream to rub over the skin to keep the blood circulating and basically, alive. Once home, I had help from my sister to care for my dogs and do basic home chores. I felt pretty good and was very mobile and not really in any pain. Then we got the lymph node report. The cancer was not present and thus, did not metastasize. No more cancer. They got it all. I felt so lucky. Recovery seemed like a breeze. Then 10 days after the surgery, and 1 day after my sister left, I dropped a tissue. As I reach down to pick the tissue up from the floor, my upper right pectoral muscle exploded in pain and began to swell into a baseball size hematoma. The pain was excruciating. I went to the ER and was admitted overnight for observation. As I still had one drain tube, they were able to confirm the internal bleeding stopped and decided to not operate. However, the pectoral muscle remains rigid and swollen still today. But the story doesn’t end here. This was the first post-surgery complication. 45 days after my mastectomy and implant reconstruction, the scab of my giant incision began to fall off. In hindsight, after having multiple surgeries since this, having a scab were the sutures where should have been a red flag. As the scab fell off in the shower, I looked down at my breast. Like unzipping a zipper, I could see the implant through a two-inch open seam. That scab was the only thing keeping my incision closed. Having since moved for my job, I was no longer in the same city as my original surgeons. I ended up at the emergency room at Mayo Clinic in Phoenix. Discussions occurred between Mayo ER surgeons and my original plastic surgeon. They decided to remove the implant and not replace it at that time. This was now the second complication. Now, as I mentioned early on, I am not a breast girl. I decided I would give flat a chance and applied for the insurance to get a breast prothesis. I also, spent many a night, just wishing I had done a double mastectomy and decided to go flat originally. But, there just wasn’t anyone I felt I could ask or talk too. The original cancer surgeons don’t even give you advice. The plastic surgeon’s goal is to make you look the same, normal, as if you never had cancer. It is easy to fall into the latter’s guidance because all you want post cancer is to get back to normal. After this second complication, I needed a break. The Mayo plastic surgeons explained many options to me which included a spacer to stretch the skin then replace with implant, DIEP-flap reconstruction using parts of your abdomen, or the latissimus dorsi flap which uses parts from your back. I took a year to decide. I mentioned I am a lean, athletic body type. Thus, there wasn’t a lot of fat available in my abdomen nor on my back. I chose the spacer for stretching skin and then inserting a small implant a few months later. After the spacer is inserted and the doctors ensure you are healing, the spacer is slowly filled with a saline solution to begin the process of stretching the skin. The first two saline fills went well. The third fill is when things began to go wrong. While earlier hematoma had hardened my pectoral muscle, that muscle was still muscle and it was pulling the spacer higher into my clavicle bone and pressing it into my rib cage. I basically had a giant saline filled boob sitting about 3 inches higher than my remaining left real breast. Imagine going to work, going out to events, trying to disguise this monster boob, which entailed making the left boob look as big. I felt eyes on me all the time, wondering if I had a horrible botched giant boob job. Complication number three is now in the books. This monstrosity had to come out. More surgery. With careful consideration, I finally decided to do the DIEP flap reconstruction. The surgeons convinced me there was enough tissue in my abdomen. But this is an 8-hour surgery. My fear of being under anesthesia and on an operating table for that length of time is frightening. Driven to be normal again, I went for it. When I woke up in the Critical Care unit at Mayo, the most vivid recollection was the pain in my elbows. Why the elbows you may wonder? During this surgery your arms are laid stretched out flat as if you are laying on a cross, for eight hours, and not moved thus getting stiff and sore. The abdomen was injected with a painkiller and as the skin was used for a portion of my new breast, so there was no feeling in my stomach. Additionally, the new breast with the tissue, skin, vein and artery from your abdomen is too new to feel anything. I was numb everywhere except those elbows. With DIEP flap the surgeons and nurses check on your new breast blood flow to make sure the borrowed vein and artery work in their new-found home. You also have a catheter as you cannot move to use a bathroom. If you’ve never had a catheter before, then I will spare you from describing it. Let’s just agree it’s gross. After a day once the catheter is removed, the nurses become drill sergeants getting you up and out of bed and walking. Nothing prepares you post DIEP flap surgery then the first time you attempt to stand up. You can’t stand UP, literally. There’s no give in your abdomen and so you begin your hall laps looking like the hunchback of Notre Dame. I was once again, full of fear. What had I done? I was certain I would never stand tall again. At 5’11” my mother always taught me to be proud of my height, stand tall and never hunch. It took me many weeks before I could stand tall again. 6 months post DIEP flap, the scars on my abdomen aren’t healing very well and they may have to do more surgery there. The new breast scars and how the tissue lays aren’t perfect either. I don’t have matching breasts, but I have two breasts now. I have my original made by God, and I have what I like to refer as my “Franken-boob” created by man. My previously flat stomach is even flatter. And I can still manage to rock the bikini. As for my love for low V-necks, that may take more time as the breast scars are still highly visible. As a breast cancer survivor looking back my surgical history post mastectomy and reconstruction complications, I had to keep telling myself, “look, you beat cancer; they got it all; and you are the lucky one.” Through genetic testing at Mayo, I found that my breast cancer was not genetic. The oncologists believe I may only need the estrogen blocking therapy, Exemestane, for 3 years, not 10. I’m know I am one of the lucky ones. It’s hard to explain to others who have never or will never have breast cancer. While I was never one who cared about the tiny size of my breasts, and never saw a need to increase their size when I was younger, I feel now that this cancer has brought too much attention to my breasts. They're just boobs. It’s been a little over two years since my breast cancer diagnosis. It’s exactly 849 days when this unplanned journey began forcing me to become a little obsessed with my health, my breasts and my body. My body is not perfect. My boobs are not symmetrical. My stomach has huge scar stretching from hip to hip. These are just physical scars. These will diminish over time. As I am writing about my breast cancer journey today, on this rare palindrome date, 02/02/2020, which is when a date reads the same backswords and forwards, I’ve decided I don’t need to wait for the next palindrome to occur in 101 years to put this cancer journey behind me. It’s been a scary and fearful two years. It’s time to begin the healing my inner scars and leave the cancer behind me. It’s time to seek out new, happier journey. To start new journeys where I know I am lucky enough to explore because I am still cancer free and I intend to keep it that way.

Now that I am on the other side of my treatment I have been much more open to reading about other people’s experiences with cancer and their treatment. A lot of people talk about their “new normal”. I have been trying to figure out if I have a new normal yet.  But it made me think, did I ever have a “normal”?  Life is full of ups and downs. When I was little I was convinced that the Brady Bunch was a “normal” family that I aspired to have. At the time it was just me and my mom, so I was on the lookout for a single dad with 5 kids. Specifically 3 boys, one girl old er than me and one younger so I could be a big and little sister. Eventually I realized that probably wasn’t a realistic family goal for me to have, so I adjusted my view of a “normal” family. Growing-up in California, I have learned that a family is a family and no two are the same.  As I grew up, like everyone, my life was a series of unexpected events. I didn’t get into classes I wanted, friends turned into enemies and then friends again, I changed colleges twice, relationships started and ended (luckily, I did find the right person at the right time), I got my dream job that wasn’t so dreamy and changed jobs again and again. Each time there was a change, whether it be personal or professional I didn’t stop and define a “new normal” I just kept going. What else was I going to do? Just sit down and stop? That’s just not how I work. Back to my cancer treatment. There was nothing normal about it. In fact, I am a firm believer that no two treatments are exactly the same because everyone is different, the support system for everyone is different, doctors do things slightly differently and patients react differently. That’s not to say that hearing about similar experiences isn’t helpful, it is, I’m just saying that there is not a “normal” way to experience it.  So, what’s my point? Just as there is no “normal” in the rest of life, I don’t think there is a right way to define your “new normal” at least not for me. For me that would mean looking at and analyzing things that I think I missed because of my cancer treatment or things that I might not be able to do right now as I still heal from the experience. The worst for me is thinking about the things I can’t control that might be in my future. So for me, my “new normal” is just going forward. Not defining things, not setting-up expectations or boundaries for what I can and can’t do. Just going forward adjusting and adapting on a daily basis as I have always done.  This might not work for everyone, but for some, I hope it might help. Breast cancer was just another thing that life threw at me that I had to figure out how to get through. And I did get through it. It’s time to move on and enjoy my family, my friends and the life I have. PS: My husband and I decided to have only one child and we love her and are so proud of her. Thank goodness I got over my Brady Bunch phase :)

My Year of Living Cancerously, by Ann Loonam January 26, 2020 In November of 2012, I found myself putting off my annual mammogram which I knew I needed to take care of. I have an extensive family history of cancer, and my Mom had just passed way from metastatic endometrial cancer a few months earlier. As a result, catching up on my medical appointments was not a high priority. Though in hindsight, it certainly should have been. My Dad died in 1986 from prostate cancer when I was a junior in college. One of my sisters has had thyroid cancer and all three of us girls in my family have had skin cancer. My brother is the only one in my immediate family who has not had a cancer diagnosis and I pray that he never hears the words ‘you have cancer.’ After my initial mammogram in 2012 I was called back for additional imaging. This had happened a couple of times before, and I wasn’t all that concerned about it. When I walked into the imaging area, the same technician greeted me who had done the initial mammogram. ‘Do you know why they wanted you to come back in?’ she asked. ‘I’m guessing they just needed more images.’ I responded. Then I saw the computer screen with my mammogram up on it. I could see the two spots as bright as day, one larger than the other. More mammogram images were taken, then I was told an ultrasound would be needed. The ultrasound was conducted, and it was after that when the radiologist came in and sat down. He said in effect that there were some spots that looked ‘suspicious for cancer.’ He told me a biopsy would need to be done, and asked since I was there already did I want to do it then or come back another day? I opted to have it done then since I was there, I then went into to a small changing area and waited for the procedure room to be prepped. That’s when it hit me, I most likely have cancer. The radiologist noted that I seemed fairly calm, that’s when I told him I had just lost my Mom to cancer and couldn’t believe this was happening to me now. I have 3 siblings, 2 live out of state, and my other sister an hour away. As I got changed for the biopsy, I sent a text to my sister in Oregon saying, ‘it looks like I have breast cancer.’ The gut feeling I had was correct, it was cancer. This was confirmed after the biopsy by my primary care doctor the next day. I wasn’t surprised at all, though I was numb and a little stunned. The official word was stage 2, triple negative breast cancer, and after genetic testing I have the BRCA2 gene mutation as well. What followed was treatment that did not go as planned. It was to be surgery, chemo, then radiation. Being diagnosed with triple negative breast cancer, there was no disputing that chemotherapy was in the plans. After the first surgery the margins weren’t clear, so I was given two options: go back in and do a re-incision to get the margins clear or go straight to a mastectomy. I opted for the re-incision. From the time of my diagnosis I was hoping and praying that I wouldn’t have to undergo a mastectomy. After the second surgery I had a call from the surgeon who let me know the margins still weren’t clear, and that a mastectomy would be necessary. I sat there and let the word sink in, mastectomy. My sister was visiting and helping me after my second surgery and after I hung up with the surgeon I asked her to let my other two siblings know what the new plan was. Again, I found myself stunned and, in a fog, trying to wrap my head around this latest news. What was truly awful when I look back now, is that I started chemo not long after hearing this news that I had cancer and knowing that when I was done months later, I would have to undergo a third surgery (the double mastectomy) and have my ovaries removed due to the genetic mutation. The cancer was on the right side, but I saw no reason to have a one-sided mastectomy with my family history. What followed was months of nausea from the chemo that nothing, and I mean nothing, helped. Debilitating bone pain in my legs that was so bad I could literally hardly stand it (thank you Neulasta!) I had made it through 10 infusions of the second chemo drug and had to stop before I could complete all 12. I was in so much pain and so miserable that I just couldn’t do it. There was no ‘final chemo’ celebration, no bell to ring, no signs stating that I was done with photos taken, etc. It came to an end when I called the nurse and told her in tears that I couldn’t come in that day as planned for chemo, I had given up, the side effects were too extreme. After some time to recover from chemo (about a month or so I believe) it was time for my last surgery. Honestly, I had been in such a fog of grief and sadness that thoughts of that final surgery hadn’t really been top of mind for me. At that point I just wanted to get it over with. I couldn’t work at all through my 8 months of treatment. The side effects from chemo were too extreme which ruled out even working part time. What followed the final surgery was the biggest surprise to me. I felt relatively ‘good’ for a month or so then came down with pneumonia. I couldn’t remember the last time I’d had pneumonia. After pneumonia, it was one virus or illness after another, and I was beyond frustrated. It wasn’t the ‘every day will feel like your birthday’ feeling that a friend and fellow survivor had told me during treatment to look forward to. After finally seeing an integrative MD about 5 months post treatment I found out that stress takes a terrible toll on the immune system, and that I went into 8 months of treatment broken down in a variety of ways. Having just lost my Mom and all the grief and stress associated with that had taken a huge toll on my body and I had absolutely no idea. Not having that important piece of information, understanding the state of my health before treatment, is what I wish had been handled differently. It’s important in my opinion, for anyone undergoing such harsh treatment for a terrible disease, to know what kind of shape they are in (other than having cancer) beforehand. What I would do if I could go back and change anything would be to have seen an integrative or functional medicine MD before chemo and find out if there was anything I could do to help my immune system and to detox from the medications. I can’t say for sure, but I would assume chemo would have gone a bit smoother, and I wouldn’t have ended up getting sick so much post treatment. My oncologist told me that in her 20 years of practice I was the one patient who had such a horrible time with chemo. I kind of wish she hadn’t told me that, but I don’t doubt it, it was awful. It was an odd feeling once I had gone through the three surgeries and 2 cycles of chemo – one of finality but not having any direction as to ‘now what?’ I believe that survivorship, and all the mental and physical aspects that come with it, should get more attention. I could have used some type of guidebook of what to expect, but I had nothing to go on. Just watching other friends go through treatment but we are all unique and handle treatment differently. Since 2013 and getting through my treatment it has taken a very long time to get my physical and mental health on track at the same time. I worked with a nutritionist, the integrative MD and others to learn as much as I could. Fast forward to today and in August I’ll celebrate being cancer free for 7 years. A big takeaway from my cancer experience is that I don’t want what I went through to be for nothing. I learned a great deal post treatment as I’ve focused on my health and that’s why I freely share my story others. In 2016 I set up my Luckygirlbyann FB Blog page and Instagram account to talk about what I learned along the way post cancer, other topics I am passionate about, along with quotes I find inspiring. What helped me get through my ‘year of living cancerously’ was the vision of a bridge and getting to the other side of it. Using the word ‘journey’ to describe going through what cancer patients do every day did not resonate with me from the beginning (nor did it resonate for Andrea). That bridge turned out to be a lot longer than I had planned on or anticipated but I did eventually cross it, and for that I am grateful.

By Madhumitha Sabhanayagam When we grow a plant, there are a number of factors that we have to ensure are in place to make sure that the plant grows well. It needs sun, water, the right type of soil and according to my dad, some loving words once in a while. ( He swears it has an effect on them!) . And when the plant falls ill, we tend to adjust these factors- maybe it needs more sunlight or maybe a dose of natural pesticide or more organic fertilizer? Our bodies are the same, several factors play a role in our overall well- being. So, when one has been diagnosed with breast cancer, we have to take into account all the factors that affect well-being. Most of the time, we strictly pay a lot of attention or solely focus on the oncology aspect of it. Treating the disease and not the body as a whole. Breast cancer is characterized by many different physical, emotional and psychological, psychosocial manifestations. This is where palliative care comes into play. Palliative care is what we call a holistic and all-rounded treatment option that could be offered to breast cancer patients. Palliative care is usually offered for women with advanced-stage breast cancer. The survival of women with metastatic breast cancer is often prolonged, the prevalence of the metastatic disease is high, posing a challenge for most oncology teams to deal with the manifestations of cancer that are not clinical. But it is not restricted to them. Patients are encouraged to seek palliative care early on in their treatment journey. Palliative care is not easy to administer, and it is a tedious process to embark on. But the benefits of it, are well worth efforts. So, what exactly is palliative care? Palliative care is the care that addresses the issues that arise due to the anticancer therapies administered to the patient. Palliative care is specialized medical care that focuses on providing relief from the symptoms and stress of a serious illness. Palliative care would address symptoms such as pain, shortness of breath, fatigue, constipation, nausea, insomnia, loss of appetite, depression, anxiety, financial toxicity. Palliative care also helps to foster better communication in family dynamics, and also with your treatment team. Adopting for palliative care would require your oncology team to either provide palliative care on their own, or they could have a palliative care team work with them. They could work in parallel or one after another. The treatment takes into accounts your needs and wants to better administer the right type of treatment for you. What to Expect with Palliative Care A palliative care team would first review your case from start to end. They also take the time to sit down and talk to your family. This is to make sure they understand the efforts made on the part of the caregivers and to understand the amount of involvement they can afford. It also helps to explore all of the treatment options available to you. They would set goals; clinical, emotional and physical goals, and they help you construct the path to achieving them. They would be in the loop with your oncology team throughout the entire care period. Palliative care would help to address the gaps in your care journey. They tweak your clinical and palliative care as you progress. They will seek alternatives to medication if it causes intolerable side effects or if your insurance does not cover it. These are just some of the things they do. We have barely scratched the surface of what having palliative care entails. It focuses on the long term result and the bigger picture. The care is for you and so only tailored to benefit you the most. Take the time to research your options and invest the time to explore the option of palliative care. Advocate for yourself and utilize the services that are available out there for you. The goal of palliative care is to treat the person as a whole and not just the disease that they have. You are so much more and so you should be treated as such. “When it rains, look for rainbows. When it's dark, look for stars.” - anonymous

By Andrea Berting Two weeks after my second chemotherapy infusion, I found myself feeling somewhat normal - at least, as close to normal as I would manage during this phase of treatment. I could keep down solid food with some level of nutritional value, my bones barely hurt, and I was mostly functional with only one nap per day. I was unstoppable! A force to be reckoned with! But what should I do with this extremely limited amount of energy? I realized that my favorite burlesque and variety show here in Chicago - Bad Taste - had a performance on an evening that I felt more or less like a human. Strolling into the theater in my comfiest cardigan, lowest effort makeup, and baldest head, for a moment it almost seemed like I had achieved something resembling my pre-diagnosis existence. Sure, a few strangers threw some pitying glances my way, but the crowd was mostly made up of friends who were happy to see me there, cancer or no cancer. After finding a seat, I looked up and happened to make eye contact with an acquaintance who I hadn’t seen in several months. Immediately, she gave me the Sad Eyes™ that I’m sure every cancer patient knows too well. Approaching cautiously, as if I was a precious piece of porcelain that might shatter at any moment, she told me how glad she was to see me - after all, she was “following [my] journey on social media”. Using most of the finite energy reserves I had set aside to get through the evening, I managed to stifle an exasperated sigh and simply gave her a pained smile. It’s difficult to put into words exactly why calling my illness a “journey” inspires such revulsion in me. So difficult, in fact, that it took me nearly a year after finishing what one might call “active treatment” to even begin writing this post. In 2010, I took a two-week solo road trip from my then-home in northern Virginia to Austin, Texas and back. It was the first time I ever traveled alone, and it was exhilarating. That was both a literal and figurative journey for me - I visited cities and landmarks I had never seen before, and exposed myself to a variety of landscapes and cultures I wouldn’t have come across otherwise. I came away from that trip with a newfound sense of who I was, and who I wanted to be. Doing something huge like that on my own felt powerful. In 2012, I quit my job as a high school teacher to pursue a career in theatre. That decision took me halfway across the country to Chicago, and kickstarted a convoluted path that started in part-time retail and brought me exactly where I had hoped to end up. Those feelings of unrest and disappointment, of taking two steps forward and one step back, and ultimately of accomplishment and pride in my work were all critical points along the way of an extremely satisfying journey. I have taken many “journeys” along these lines - physical trips, emotional challenges, spiritual transformations, blah blah blah. There is nothing about my experience as a cancer patient that I feel remotely resembles any of that. Overall, I find it extremely off-putting when people feel the need to use flowery language to talk about something as awful as cancer. No, I didn’t “fight like a girl”. I’m not a warrior (ugh), or an inspiration (yuck), or anyone’s sister except for my actual brother's. In my mind, calling cancer treatment a “journey” falls under this umbrella. It’s just another way to make it sound somewhat pleasant or tolerable, even borderline fantastical. Please, please, please, do me a favor and just call this BS what it is - a f***ing awful ordeal that nobody should have to go through. “But wait,” I hear you saying, “My mom/aunt/best friend/dentist calls their cancer treatment a journey! What about them? Are you saying that they are BAD and WRONG???” You’re right - there are lots of people who refer to having cancer as a journey they’ve taken. And guess what? That’s totally fine! If you’re a person who has had cancer, then you can call it whatever the hell you want and I’m not here to stop you. Plenty of folks find it empowering to use this type of language, and I fully support them. We lose control of a never-ending list of things when we go through treatment, and speaking about it in a way that works for you is important! So yes, if you hear your grandma refer to her “cancer journey”, then she probably won’t roll her eyes at you if you use that phrase. Listening to the cancer patient in your life, and really paying attention to the way they refer to their experience and treatment themselves, will give you all the clues you need to talk to them in a non-exhausting way. (This works for all kinds of stuff, by the way - nicknames, pronouns, job titles, etc. Paying attention to the way others refer to themselves is a great way to make sure you’re speaking about them respectfully!) Until you get a chance to observe what language they prefer to use, it can be difficult and scary to reach out to someone dealing with a cancer diagnosis. After all, you don’t want to make them feel worse than they already do! From my experience, here are some safe things to say that pretty much every cancer patient will appreciate: “Everything about this is awful and I hate that it’s happening to you.” This kind of statement is empathetic, acknowledges that the person is hurting, and uses straightforward language. Win-win-win! “Please let me know if I can make you dinner/drive you to an appointment/buy you weed/walk your dog.” It’s tempting to simply leave it at “let me know if you need anything”, but what seems like a flexible offer to you can feel overwhelming to the patient. They very likely have no idea what they’ll need, and won’t reach out to you because they don’t know where to start. Offering specific, concrete things you know you can do will make it more likely that they will take you up on it when those needs arise. “If you ever need to vent, I’ll listen.” This is a little more open-ended, but I find that it’s a good approach because it doesn’t put pressure on the person with cancer to spill their guts immediately. Personally, I know I felt like a few people expected me to cry on their shoulder on command, and I couldn’t help but wonder if it was because they actually cared about me or because they wanted to feel like a good person for “supporting” me. If you’re open to listening, then YES ABSOLUTELY LET THEM KNOW, but follow up by being ready to talk about non-cancer things until they feel like emotionally unloading. “I don’t know what to say.” Probably the #1 most painful thing you can do to your friend or loved one with cancer is to completely disappear. Hearing “I don’t know what to say, but I want you to know that you’re great and I love you” is one billion times better than feeling like you’ve driven someone out of your life by being a scary sick person. This is by no means a comprehensive list! Everyone is different, so use your best judgement. If you know that your friend has a weird sense of humor, then sure, tell her that her hair loss from chemo is simply the first stage of shedding her mammalian traits so she can transform into a beautiful snake girl. I’m sure she’ll appreciate it. To hear more about Andrea's experience, check out her story here.