Today is February 22, Dense Breast Awareness Day. Many women, including myself are completely unaware of the necessity of determining their breast density and how it relates to a potential cancer diagnosis. During my many mammograms, which started at 40, because of my family history, I was told that I had dense, difficult to read breast tissue, complicated by numerous cysts. But the importance of being extra cautious or the increased risk I might be in was never discussed with me. I had absolutely no idea there was a numerical scale that outlined my risks. Counter intuitively, my having dense tissue made me a little less vigilant. When I would discover a lump, I would put it down to my dense, fibrous breast tissue and delay follow ups. Since the lumps often came and went in the space of a few months, I did not panic when I found the one that would prove to be cancer. Finally, when it didn’t disappear, I went in to have it checked. The mammogram was suspicious, the ultrasound indicated further exploration and the biopsy confirmed breast cancer.
That first diagnosis was on September 5th of 2011. It was a stage 2B ER/PR positive which required two surgeries to remove the tumour and all of my lymph nodes on the right side. This was followed by months of chemo and radiation. I came out the other side, bald, skinny, sporting a ton of side effects and a very culturally inappropriate “not positive” attitude about breast cancer. If this was a gift, I was not buying into it. But I was done. Except I wasn’t.
In May of 2015, I was diagnosed again. I found the lump and knew it was not normal. Although my last mammogram was not even 6 months before, my oncologist trusted my instincts and scheduled another. An ultrasound and yet one more biopsy confirmed a stage 1 ER/PR positive cancer in the left breast. This was when I started to think about having a double mastectomy.
I decided to meet with both an oncology breast surgeon and a plastic surgeon to see what my options were. While I waited I was bombarded with well-meaning notes of “take them off – I would”, “It’s a free boob job! How great is that?” “Are your using them?” I had a slightly more ambiguous relationship with my breasts – and I envied people their clarity. Of course, I have a slightly ambiguous relationship to many things. I have always struggled with black and white. It seems…so black and white.
The first appointment did not go well. I was not excited by the idea of implants and I was rather bluntly informed by a plastic surgeon that I did not have enough fat to have reconstruction with my own body tissue. She might be able to make one. I asked her if I needed to pick my favourite one? Seeing her blank faced response did not stop me from then suggesting that she make one in the middle. The appointment didn’t end well. My levity was no more appreciated by her than was my reluctance to have implants. My next appointment with the oncology breast surgeon resulted in a decision to have another lumpectomy followed by radiation. Out the door I went confident that I was done.
Even at this point I did not understand how much risk I might be putting myself in. But what followed was 4 years of constant testing, scans, biopsies and every time I had another scare it was worse. I was diagnosed with PTSD. In July of 2019, after years of anxiety I told my oncologist I wanted my breasts gone and I was not doing reconstruction. Online and in private Facebook groups I found amazing women telling their stories and boldly sharing images. I marched back into the same breast oncology surgeon’s office with my photos of what I wanted, courtesy of the purloined web images, and told him to make me look like a 14 year old boy. He was shocked and did attempt on several occasions to talk me out of it, but I woke up from surgery without breasts and a great flat closure.
Would I have done this sooner if I had known that the density of my breasts put me at a higher risk? Part of me does think, had I known, that my second surgery would have been a double mastectomy. Maybe my first one. Hindsight is always 20/20. My only conclusion is that we need more information. We need every possible tool to make informed decisions. If breast density will impact my diagnosis. Tell me. If implants are frequently not, as frequently presented, a one and done surgery. Tell me. Breast Implant Illness a possibility? Tell me. Will genetic testing help? Tell me.
My advice in all of this. Ask questions. Many, many questions. Then ask more. The issue for most of us is that we have a limited time to figure all of this out. You receive a diagnosis and run full tilt into panic mode. I was not dealing with an active cancer diagnosis when I decided to have a double mastectomy without reconstruction. It meant that I could take months to investigate and decide the best route for myself. That is not an option that most of us have.
I do think many things have changed in the 11 years since this all started for me. More are required. One of the largest, besides information, is that we become visible to each other. In addition to continuing to contribute to online discussions I started my own Instagram account to feature fashion for a flattened body. It evolved into not only fashion, but also musings on cancer, mental health and occasionally my life and art practice. I am overwhelmed at the support from people not only in Cancer-land but ordinary people from all walks of life who have been touched by cancer. And who has not been?
Tina Martel is an instructor of Fine Arts and a professional artist. She is also the author of the multi award winning illustrated book Not in the Pink which centers around her first diagnosis. She has been featured online and in many publications as a flat model and spokesperson for “living flat.”
Not in the Pink is available here: https://notinthepink.ca
Instagram flat fashion account: not_in_the_pink_
Until there’s a cure, let’s find breast cancer early!