In their own words – breast cancer awareness month

October, when fall fully establishes itself, is the month of changing leaves, orange pumpkins and Thanksgiving. It is also Breast Cancer Awareness, or Pink Ribbon Month. I have a complicated relationship with the little pastel piece of cloth.

For many, the pink ribbon signifies hope, strength, solidarity and a brighter future for those confronting breast cancer. For me, and likely others like me, it also brings up all the things I don’t want to think about: pain, loss, fear, mortality and recurrence. It also brings up guilt and shame, as the type of cancer I had was non-invasive, it had not spread to my lymph nodes. There is an underlying feeling that I have not endured what a true “survivor” does, as medically speaking I was stage zero, and did not require chemotherapy. I had close to 11 cm of cancerous cells removed from my right breast, bilateral mastectomies (1 prophylactic), 28 radiation treatments, and two revision surgeries, yet still have lingering feelings that I don’t fully belong in this conversation. Rationally I know this is not the case, but as mentioned, I have a complicated relationship with the pink ribbon.

At age 35, in relatively good health (my Sunday long runs were still in the double-digit kilometers), I found a spot of blood in my sports bra. With a sinking feeling, I called my family doctor, who referred me to the local breast clinic at the hospital. I had a mammogram and breast ultrasound, which appeared to be clear. I had a consultation with a surgeon, who advised that I “wait and see”, and that we revisit to see if surgery would be needed. This approach did not sit well with me. I had the feeling that something wasn’t right. I requested another appointment with the surgeon, and she agreed to do a ductectomy. Two months later, I had a day surgery to remove a small pie-shaped piece of my breast. I was off work for more than a week, but up and about, and went back to work not too concerned about the future. I attended my post-op appointment alone, most concerned about when it would be safe for me to run again. Little did I know that the offending duct was not a cyst, but ductal carcinoma. The surgeon told me that my pathology did not reflect “clear margins”, and began talking about radiation, leaves of absence and other possibilities. In shock and tears, I drove myself back to work to gather my things, and get my thoughts together.

This began the research phase.

Though I do not recommend Doctor Google, I do recommend keeping yourself informed (dare I say abreast?!?) on as much current and reliable research as you can if confronted with a new diagnosis. Keep your own notes and records, and don’t be afraid to ask questions. You are your own best advocate. I had at least three specialists at any given time, and dependent on your geographic location, they may not all work in the same hospital, or know each other directly. If you feel too overwhelmed alone, bring someone you trust with you to your appointments to listen with a different set of ears.

The long story short

After the ductectomy my brain went into overdrive. I had a breast MRI that picked up something, but was ultimately inconclusive. My initial surgeon did not have as much experience in DCIS for my comfort, and could not offer a plan that inspired confidence. I was able to be referred to a second surgeon, who was warm, wise and candid. We spoke about the possibility of repeated surgeries (as the DCIS wasn’t clearly seen on ultrasound or mammogram, and yet the pathology showed cancerous cells up to the margin). My daughter was seven years old at the time, and the prospect of multiple surgeries with no end in sight was not the right plan for me. I was so worried that if the only place we could see these cells was under a microscope, there could be more lurking, and I wanted to be as aggressive as possible. At first, I just wanted to “get rid of them” (go flat), but ultimately made the decision that for now, immediate reconstruction was the best route. A professional and supportive general surgeon, and an innovative plastic surgeon operated on me for about five hours six months from my initial discovery. I had four large scars, and two implants (that felt like rocks) in my chest when I went home. My underarms (where the lymph nodes were removed) and the drains hurt the most, but I was home the same day, and incredibly grateful to have been offered the surgery to put my mind at ease. At my follow-up appointment, it was shared that though I had had full mastectomies, there were still cancerous cells at this skin surface on the right side (not a clear margin again), but I was very happy to hear that the nodes were clear. Enter radiation treatments. Apparently, I am a “risk averse” patient. I wanted to be rid of these otherwise invisible cells! After 28 “zaps”, my skin didn’t suffer too horribly (saline soaks do work), and my treatment was complete. The radiation tightened the skin and scar tissue on the right side of my body, and so I had two further surgeries over the next year to even things out. I got 3D nipple tattoos, as I didn’t want to be confronted solely by the diagonal scars each time I saw myself naked.

My scars have faded from angry red to pearl pink. I miss the sensation of my original body, and the breasts that fed my baby, and made me feel feminine, womanly and sexy. At the same time, I am so incredibly grateful that I did not lose my arms, legs, eyes, or vital organs. As much as breasts have purpose, so much of our attachment to them is emotional. I try to find humour in all of it… I never have to worry about gravity taking hold!

I have had amazing doctors, surgeons, and a physiotherapist who worked with me to regain a full range of motion. The scar tissue and radiation led to muscle tension, numbness and an inability to move the way I was accustomed to. I will continue to care for myself with the support of professionals. So often we treat the immediate problem, and don’t think long term. As my surgeries and treatments came relatively early in life, I want to make sure I do what I can to maintain the quality of life I enjoy. I love working out again, and no longer fear pulling something apart. I am not afraid of strength training, and am working to balance the muscles in my body to support mobility. It is amazing how after all of this, with time, I feel that I have become myself again. The brain does not forget pain, but I believe with each experience we grow. I feel strong again physically. I’ve come to realize that feeling attractive has so much more to do with a sense of self-worth, confidence and joy than it does with cleavage.

This experience taught me to trust my gut, always.

I’ve come out of it stronger in many ways, and a little bit softer in others. I enjoy seeing women with scars like mine in the media (the power of representation!). I am grateful for everyone who helped me along the way (doctors, nurses, technicians, and therapists), and that I live in a country where healthcare is accessible. I am glad that there is a pink ribbon. It is more than just a symbol of hope. There are a myriad of emotions resting in that pale pink. And it reminds us we are not alone.