By Devorah Borenstein
My breast cancer diagnosis wasn’t what I imagined. Indeed, this is a very common experience. We all assume we won’t get breast cancer — until we do. None of us knows what will await us tomorrow when we open the door. However, it is less about knowing what will be, than how we will react to it. We can’t stop breast cancer from coming, but we can stop ourselves from becoming an object of breast cancer. If we give ourselves permission to let go while insisting on the type of advocacy we deserve, we will achieve a well-being we also could not have previously imagined. Advocacy means making sure that there’s enough space for who we are and what we need after the diagnosis. That is our right.
In January 2018, a ductal carcinoma in situ hijacked my left breast. As a result, I underwent a lumpectomy. Later, I met with a radiologist who entered the consult with my entire medical history on a 3x5 index card. I was very impressed. Though I think that the doctor was even more impressed when he saw that I not only came with a pen and a pad, but had two companions with their own note-taking devices ready for action.
I was unwilling to agree to any treatment without first knowing:
exactly what was being proposed,
what the risks and benefits were,
and whether other options were on the table.
My partner and a close friend accompanied me because I knew that I would not be able to properly hear any information in the consult. I was pleased to see that the 3x5 index card was just a way of jumpstarting a much longer conversation about the things that were important for me to know in order to give informed consent to the proposed 21 rounds of radiation.
In May 2019, I had my second bi-annual breast MRI. An illumination on the imagery was concerning. Later, an MRI-guided biopsy in my right breast revealed another DCIS alongside a Stage 1 invasive carcinoma. I mourned because I knew that getting rid of my breasts was now the logical consequence of my diagnosis.
For a week, I poured over photos of breastless women, trying to understand what I could not have imagined previously. I knew I was not interested in recreating a substitute for something I could no longer have. Mourning was healing for me because my tears were just a little bit of salty truth.
I am blessed for so many reasons, including that I am a lawyer and appreciate the value of due diligence. But I am also a human being. After I heard the words “you have stage one breast cancer in your other breast,” I immediately knew, once again, that I would not be able to hear anything in the consult with the oncologist and the breast surgeon. This time, my partner and 3 friends accompanied me to the hospital. Each of us came with a pen and pad in tow, and a several lists of questions. Whatever my decision was going to be, I needed to be able to rely on what we had all processed as a group. Insisting on the support I needed was not a sign of weakness or incapacity. It was my hallmark of strength. It was the tiny piece that I could control in the battle. At the end of the day, we want the facts to add up for us personally — not for someone else. So what does this mean in terms of what we could not imagine before?
A breast cancer diagnosis is never anyone’s fault, and never something that we can control. However, we can control the relationship we have with our providers, the disclosure we receive from them, and the informed decision-making we engage in. Invariably, these events are what contribute most to our well-being.
My doctors not only respected me for bringing in a support team. They embraced it. I remember that my oncologist, upon entering the exam room, joked, “Wow! You have a large family! I didn’t realize that I was going to be interviewed!” That was exactly it. A woman should never have the feeling that it is the doctor who is doing the interviewing at the consult. It is the woman who interviews the doctor:
She must not only figure out whether she can form a relationship of trust and respect with her provider. She must also determine whether he will support her self-advocacy.
We routinely interview other people in all types of mundane circumstances — why not in the most important consult we will ever have in our life? My oncologist’s initial joke — which helped me breathe in an otherwise anxiety-ridden situation — highlighted the truth that the control we have as breast cancer patients is the ground rules we lay down in our consult.
My surgical consult was no different from the oncological consult. My partner and I were waiting for the breast surgeon in the exam room, while my friends waited outside per a nurse’s request. Upon entering the room, the surgeon exclaimed, “Where is your entourage? I hear you have some friends with you! Bring them all in — the more, the merrier!” That my surgeon was unequivocally in favor of me having the support I needed during the consult made my experience about me — and not about him. That is the point. It is not your doctors who are facing multiple treatment decisions. It is also not your doctors who will undergo a mastectomy and decide whether to reconstruct breast mounds or opt for an aesthetic flat closure. For sure, not all doctors treat their patients the way my doctors treated me. But that does not change the basic truth: every woman deserves respect for who she is and what she needs to get past the cancer. It’s your diagnosis and your right to insist on the support you need in the consult. Period.
Consequently, I also controlled my informed decision-making.
Certainly, the questions my advocates and I had prepared in advance were important. But equally important was my doctor’s attitude. From the start, my breast surgeon made clear that he was not there to tell me what to do, but to give me the information and support I needed to make an informed decision that was right for me. When I walked into the surgical consult I had the advantage of already knowing that I wanted to “go flat” and live my life with a smooth, natural chest contour. My surgeon not only welcomed my personal choice, but encouraged me to look into the flat movement and speak with women who had gone flat after mastectomy. In fact, my surgeon was the person who told me about Kimberly Bowles, the president of Not Putting on a Shirt, and the Cosmopolitan article about her experience with “flat denial.” (I note here that I am now on the Board of NPOAS — but that’s another story). What was significant was that my surgeon advised that personal choice is about imagining where we want to be 5 years from now and backtracking that to the present. According to him, imagining where we want to be in the future is what informs the type of procedure post-mastectomy that is right for us.
And so there we are full circle. While we cannot imagine receiving a breast cancer diagnosis, we can more than just imagine where we want to be in the future. Being in control after hearing that we have breast cancer is not about the cure. It is about demanding the support and information each of us needs as competent women to make healthy, informed decisions about our bodies that are right for where we want to be now — and for years to come.
Devorah Vester is an appellate attorney in Boston who helps persons living with mental illness regain their liberty, agency and dignity after they have been involuntarily committed or placed under guardianship. In July 2019, she had a double mastectomy after a local recurrence. Devorah always knew she did not want breast reconstruction, and feels fortunate that her breast surgeon – who told her about the flat movement – honored her choice. Devorah is also on the Board of Not Putting on a Shirt, a 501(c)(3) organization whose mission is to promote optimal surgical outcomes for women who choose to go flat after mastectomy and full disclosure of all post-mastectomy options. Devorah’s closely held values of integrity, transparency and individual autonomy made her a good fit for NPOAS. Her goal at NPOAS is to bring all parties to the table – doctors, legislators, health insurers and patients – to make certain that in every state a woman’s right to full disclosure and informed consent is protected, and her decision to go flat is respected.
