I was diagnosed with breast cancer in 2015. I was 37-years-old, my son was 4-years-old and I had started at a new job only four months before being diagnosed. My diagnosis did not start with a …
I was diagnosed with breast cancer in 2015. I was 37-years-old, my son was 4-years-old and I had started at a new job only four months before being diagnosed. My diagnosis did not start with a lump. I had noticed some minor changes in my left breast that I mentioned offhandedly to my physician's PA at my annual exam.
The unusual changes had occurred in August, but everything seemed to be normal again and it was now December. We were literally wrapping up my exam when I described what had occurred. The PA reviewed my family history. My aunt had had breast cancer in her late 40s, but no other family history of breast cancer. The PA suggested that I go ahead and have my first mammogram so that we could have a comparison point for future mammograms over the years. I had no idea in that moment how important that provider's decision would turn out to be.
I scheduled the mammogram. The earliest appointment was Dec. 31, 2014. The tech concluded the exam and I was asked to wait. I can remember everything about that waiting room vividly – the color of the walls, the magazine I was reading. They called my name and took me back to a room that was clearly the “bad news room.” The radiologist met with me and explained that there was a “calcification” in my right breast. It was in the left, which is the one I had had the changes. He noted that very few of these cases turn out to be cancer, but he suggested that I meet with a breast surgeon and have a biopsy done. I went home, told my husband, and rung in the New Year the following day with this question of cancer in my mind.
I was really quite optimistic that it was not cancer. The odds were so far in my favor that it didn’t seem necessary to let it weigh too heavily on my mind. I didn’t tell any family members at that point. My father was struggling with kidney failure and everyone had enough on their minds. I met with a breast surgeon who thought it was so unlikely to be cancerous that she gave me the option of waiting 6 months and then repeating the mammogram. I was clear that I wanted to definitively answer the question of whether or not it was cancer and move on one way or another. I didn’t want to wait. The biopsy was done and a day later I got the call – cancer.
I was immensely fortunate to have caught it very early. It was stage 1. A tiny tumor, but it has grown beyond the boundaries of the ducts, so it was classified as invasive. This began the period of calls to family, research, waiting and decision making. I was told that the next step was to have genetic testing done that would inform my course of treatment. I tested negative for the BRCA genes, but positive for another gene associated with breast cancer. In cases where someone is positive for BRCA, there is a clear recommendation to have a mastectomy. In my case, things were gray. I was given the option of a lumpectomy with radiation or a mastectomy. I met with several doctors and ultimately decided on a bilateral mastectomy with implant reconstruction.
During this period of research and decision making, my husband and I were deliberating how to tell my son. He really had no concept of what cancer was. He had not seen anyone die of cancer and would not understand what it was when I explained it to him. I met with a counselor who works with families experiencing serious illness. We talked about ways of talking with my son about cancer in a way that would match his developmental level and understanding of illness. In that meeting, the counselor provided us with a booklet that discussed talking about cancer with children. It was titled, “Tiny Boat” and centered on this metaphor: “A family that weathers a storm together stays close in the warmth of the protective hull of the boat even as the ocean rages. Once in the clearing, this family will always remember the warmly lit faces of the ones they love as they huddled close to one another in the boat. Whatever the outcome, the memory of these faces remains strong.”
That metaphor has never left my mind.
The tumor was small enough that I did not need chemotherapy prior to surgery, so after the decision of the mastectomy was made, all that was left was a long wait until the scheduled surgery date. On March 17, 2015 (St. Patty’s Day – I never forget the anniversary of my surgery), I had a bilateral mastectomy. I remember waking up from surgery elated because I was theoretically cancer-free at this point and the 6-hour surgery was over. Within an hour, the elation was replaced by nausea, vomiting and pain. For several weeks after the surgery, I was unable to sit up without the assistance of my husband. At 37, I had never been through surgery and I was unprepared for the difficult recovery ahead of me. I was so very fortunate to have my husband’s help, the love and support of my mother and mother-in-law and friends and family who checked in, made me laugh, even though it hurt and brought meals.
The final pathology report came in one week after surgery. The news was good, there was no cancer in the five lymph nodes that were removed and the tumor markers determined that chemotherapy was not necessary. I continued to heal from the mastectomies and underwent what turned out to be a five-month long reconstruction. The method that my plastic surgeon used required filling of “expanders” and two additional surgeries. To even bemoan that period considering that I was lucky enough not to have required chemotherapy seems ridiculous, but the reality is, that the reconstruction was actually a difficult experience for me. I ended up with back problems that required physical therapy. I was in a lot of pain.
One thing that is so clear to me now is how different everyone’s experience with breast cancer is. One woman I spoke with told me that her reconstruction was a breeze. That was shortly after my mastectomies, so it was probably pretty helpful for me to hear that at that time, it was better that I didn’t know what was ahead. Early on, I met another woman who was having chemo prior to surgery, she was also stage one. This made me nervous. Did I need chemo too? Would surgery alone cure me? While our experiences vary so much, there is such a comfort in connecting with others who have faced many of the same experiences.
I am now 2.5 years cancer free. I continue to be followed by an oncologist every six months. The question of “why me?” remains unanswered and always will. The gene that I have does not entirely explain why I got cancer. Not everyone with that that variant of that gene gets cancer. In fact, most do not. This is one of the lasting lessons from cancer for me: much of life requires that we live with uncertainty. We can’t always know why something happened. Things are beyond our control. The other lasting lesson is a simple one, one we already all know – life is short. Until cancer, though, I didn’t feel it in my bones. Cancer left that lesson nestled right in the back of my throat, catching me off guard with tears when I don’t expect it. After I recovered, I became a little bolder. We did things we’d been putting off until the right time - we got a dog, we relocated to Colorado. Here I am.