By Gloria
Exactly a year ago – August 31, 2020; I was given a diagnosis of Invasive Lobular Breast Cancer....
The Diagnosis
This diagnosis rocked my Spirit to the core. My partner, who had come with me to my dermatologist appointment to get my stitches removed from my surgical biopsy, gently held me in the parking lot and we both cried. My General Practitioner (GP) called me within 15 minutes of my receiving this news. She immediately booked an appointment for the next day to get my pap smear test done, referral to get another mammogram done (even though I had a mammogram approximately a year earlier that showed nothing), and a referral to a surgeon.
Lump in Arm
I had found this pinhead lump in my underarm (which I have now come to understand is the tail end of the breast) back in 2018, and I had shown it to my GP who sent me to get an ultrasound done. We both thought it was a cyst and so we agreed to monitor it after the ultrasound came back clear. The following year my mammogram, showed nothing either.
The Start
2019 was a year of many challenges – it started with a swollen right knee that was initially diagnosed as a Baker’s Cyst. Being unable to walk on it for a couple months allowed me to research the causes of a Baker’s Cyst and so I chose to change my diet and eliminate the foods that causes inflammation.
In July 2019, my 94 year old Dad who I looked after for 12 years after he suffered a stroke passed. Around the same time my mammogram was due. It showed nothing.
In August 2019, I found out I had a full macular hole in my right eye. I underwent a vitrectomy surgery to repair my macular hole and replace the lens in that eye on October 1, 2019. Anyone who has been through this surgery knows that you have to lie face down for a week 24 hours a day, if possible. It was great news when I found out I could read again in that eye – the tears of release and gratitude flowed.
Fast forward, toward the end of February 2020, I started with headaches around the temple of my operated eye. A call to my ophthalmologist had me go to my optometrist to check the blood pressure, etc. behind the operated eye. The reason I share this is so that you can understand the full sequence of events. There was no problem with my operated eye, but the temple headaches continued over 3 days straight. So, I contacted my GP who saw me and was concerned that it could be Giant Cell Arteritis – so she prescribed a small dosage of prednisone and ordered blood work. The next day, we got the results of my blood work that showed high inflammation levels – so she again increased the prednisone. In the meantime, she had discussions with a rheumatologist and vascular specialist and ordered a temporal artery biopsy. This is the only way that they can eliminate that it wasn’t giant cell arteritis. Thankful and grateful that it wasn’t!!!
My Whole World Changed
Now, March 2020 and COVID 19 global pandemic is announced. I did notice that the so-called “cyst” had grown and the consistency was different. So, I booked an appointment with my GP when possible around June 2020. She immediately sent me to the dermatologist to have it removed. That is when my whole world changed – the dermatologist explained to me that an ultrasound is not a definitive tool, plus it was since December 2018. He shared with me that he can tell from the biopsy if it is a cyst and if it is he had prepped the area to remove it but if it wasn’t he would do a surgical biopsy. That was August 16, 2020, and 2 weeks later, I had an appointment to get the stitches removed, and that’s when I got the diagnosis of ILC (Invasive Lobular Carcinoma).
The Tests
Ultrasounds and mammograms on August 31, 2020 still did not show any inconsistencies or abnormalities. My pap smear came back negative. So all good in that respect. The surgeon's first visit occurred that week also and a number of tests were orders – CT Scan with contrast of chest, abdomen, and pelvis; Breast MRI and Radioactive Tracer full body bone scan. These tests would provide further results as to what the surgery and treatment plan would look like. So, for the next couple weeks I underwent these various tests.... all use very toxic chemicals so they had to be staggered to ensure that the chemicals were no longer in my system.
The Surgery
Great news considering everything – it was a single tumor and so surgery was scheduled for September 29, 2020 at 8am EST for a lumpectomy. I knew that all will be well since 8 is the sign of infinity, and September 29 was one of my dear brother’s birthday’s who had transitioned 7 years earlier. My surgeon and I had agreed that if the sentinel nodes were clear that she would only do 1 auxiliary lymph node dissection. Surgery was successful – nothing in the safe margins of the lumpectomy, nothing in the lymph nodes (sentinel nor auxiliary) and so next treatment post healing of the surgical area was radiation.
Active and Informed
During this entire time – from August 31, 2020 to October 30, 2020 – I did as much research as was possible. I chose to be an active informed participant in my health and wellbeing – so I researched Mayo Clinic and Breast Cancer.org around ILC. In addition, I registered with Wellspring, Ontario, Canada, a non-profit organization that provides numerous services and programs for any Canadian Cancer Patient and their main caregiver. I initially registered for both Reiki and Therapeutic Touch (TT). Being a trained Reiki Master – I was open to receiving energy healing and I had had 1 TT treatment when my Dad was in Hospice back in July 2019 – and I remembered how calming and peaceful it felt after the treatment.
Therapeutic Touch Treatments
I continued to have TT treatments remotely by a retired nurse who I called my Earth Angel.... before each test, day before surgery, during surgery, day after surgery, and each day after my 10 radiation treatments. TT is so healing that it is now taught based on it’s evidence-based research at a number of teaching hospitals for nurses and doctors. I believe in my heart of hearts that it is due to TT that I didn’t require any pain meds at all post surgery and other having to have a table tennis ball aspirated 2 weeks post surgery no other additional interventions were required. Remember – the tumor and all the lymph nodes that were removed and dissected were all in the same area in the underarm – a 4.5in incision.
I opted, after my research, to do the Accelerated Radiation Treatment Plan – I read all the papers available at the time on this – The Lancet, Breast Cancer.org, and Yale before making an informed choice. I'm so happy and thankful this was an available choice!!! For anyone who isn’t aware of it – please check with your radiation oncologist and have the discussion if it is a possible treatment plan for you. Again, I contribute no broken skin in the radiated area to TT which I had each and every day after radiation remotely by my Earth Angel!!!
Treatment Plan and Side Effects
The next step in my treatment plan was an AI (Aromatase Inhibitor) since the pathology of the tumor indicated that it was ER/PR+, HER2 -, Stage 2, Grade 1 (less than 10% of cells were abnormal), and my ONCO Score was 11. Being a 63 soon to be 64 post menopausal woman at the time, I would have had to have an ONCO Score of 26+ for chemo to be even suggested/recommended. Another thankful moment in the journey!!!
I was able to complete my radiation on December 4, 2020 and commence the AI (in my case Letrozole was prescribed) on December 12, 2020. Unfortunately, I experienced all the 3 most severe side effects possible from this AI. Night sweats, hot flashes, and joint pain and stiffness in my fingers – to the point it disrupted my sleep in the wee hours of the morning – the REM sleep time 2am-6am. My MO suggested after the first month to take it in the morning versus night – the side effects continued without a break....
After 2 months, my MO suggested taking a break and once the side effects subsided that he will start me on another AI – Exemastane. Unfortunately, the side effects continued like clock-work for 6 months even after stopping the AI.
In those 6 months, I went back and reviewed all my reports from my various tests to again make another informed decision – and since my CT Scan had shown a NAFLD (Non- alcoholic fatty liver disease) I decided to do some research on this. Thankful and grateful that with the right diet and exercise this is the one organ that can rejuvenate itself but it takes approximately 3 years.
Internal Guidance
I have made an informed decision to not take any AI since an AI for 5 years with debilitating side effects would then require me to have possibly every 6 months bone injections for 3 years and that also has it own set of side effects. As I meditated daily and asked Great Spirit what was best for me – I kept getting the same intuitive knowingness – I don’t need an AI. BTW – my onco score also showed that even taking an AI for 5 years it will only probably result in improving a possible recurrence from 1 in 10 (which is the national average of breast cancer) to 1 in 33. My internal guidance was shouting no to me – so I chose to follow my internal guidance and instead focus on myself as a whole being!!!
Living in Gratitude
I live each day in gratitude as I walk the journey of my life in daily meditation, journaling, putting healthy boundaries, eating healthy foods, and daily walks in nature while chanting.
I'm very grateful for Alistair Cunningham who was guided to write the book entitled “A Healing Journey” and all the workbooks that go with all the various modules and run by Wellspring Canada!!!
I have made changes in all areas of my life – physical, emotional, mental, and spiritual and work on all of them daily. I am currently completing the Healing Journey 5 module and registered for both Healing Journey 6A and 6B to commence mid September 2021. I have also felt guided to complete TT Level 3 so I can volunteer with the following organizations – Wellington Hospice Guelph, Groves Memorial Hospital (where I already volunteer on the Board of the Volunteer Association and has been for the last 2 years), and Wellspring Canada!!!
Living my best life possible every day as I seek and act on the internal guidance given to me by Great Spirit/God/Divine Matrix – call it what you will!!!
Thank you for sharing your story, Gloria. SBC loves you!
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