Four months ago today, on April 1, my mom, Luke and I walked into Rex Breast Care Specialists for our first meeting. It was the day I was officially diagnosed with breast cancer. At that meeting we plotted a course of action that included a lumpectomy followed by six weeks of radiation and five years on a drug called Tamoxifen. Suffice it to say, it was the least funny April Fool’s Day ever.
The piece of the plan that was most difficult to wrap my mind around was the Tamoxifen. I can recover from a surgery and I can suck it up for six weeks of radiation. The Tamoxifen felt like a violation though. It was adding insult to injury.
In my case, the drug was to be used in hormone-receptor-positive, early-stage breast cancer after surgery and radiation to reduce the risk of the cancer coming back. The benefits are strong when you consider my age and how much life I have left to live. It reduces the risk of recurrence by 30 percent to 50 percent in premenopausal women. It also reduces the risk of a new cancer developing in the other breast by about 50 percent. When you layer in that I was being told that my chance of recurrence would increase by one percent each year, and combine that with my already increased risk due to my ATM mutation, plus the kind of cells I had, it made sense.
As an aside, my Aunt Nancy was a part of the clinical trial for Tamoxifen more than 25 years ago. As I have mentioned before, she was committed to allowing her doctors to learn all they could from her body. To know that something she was willing to be one of the first to try is now one of the drugs most widely used in breast cancer patients is really awesome to me. Again, I credit her strength and fortitude for my own dedication to staying on top of my health. If she was willing to go to such great lengths to bring medicine forward for breast cancer patients, I was going to take full advantage of everything she, and women like her, helped make available.
However, the drug shuts down your ovaries. It would basically send me into menopause for five years. We were about to get married. To be fair, we didn’t intend to start a family immediately but being told I couldn’t even consider it for five years was making me come undone. I was so angry at my body. I wanted to fight my little heart out and move forward. To hear I would have to let this linger for FIVE YEARS - longer than I have even known my husband - was maddening. I obsessed over it and all of its side effects. No matter how bright my outlook, I couldn’t stop coming back to it. Luke kept telling me to stop, we HAD to take things one step at a time and tackle them as they were real. He reminded me that this was months down the road and I needed to step back and handle what was in front of us now.
How right he was. Unfortunately, my two surgeries didn’t eradicate the cancer, it was still in my margins, meaning it was still in my body. When we made the decision to have a bilateral mastectomy, you can imagine my first question, “What about the Tamoxifen?” My doctor explained that while she thought it would be unlikely I would still need to go through with the drug, she would refer me to a medical oncologist to make that final decision. She wanted the expert in that area to make that call.
Today, four months to the day since my diagnosis, Mom, Luke and I met up again and this time went to the Rex Hematology Oncology Associates to meet with a medical oncologist. She was great. No surprise because all along this journey, I have had the most INCREDIBLE doctors. Anyway, she finally gave me the official word - I will NOT have to go on Tamoxifen. We could not be more thrilled. I will do anything if it means bettering or protecting my health but to know that harsh drug is no longer my course of treatment fills my heart with hope for a healthy future unencumbered with the constant feeling of being ill or subject to potential illness. I do want to share that the reason for this wonderful prognosis is due to my commitment to early detection. We discussed a lot of different things and she confirmed that my cancer would have almost certainly become invasive breast cancer had we not caught it so early. This means it would have spread. To hear someone tell me that outright was exhilarating. I am really proud and so thankful for the open dialogue my family has always had on health. She emphasized how right the bilateral mastectomy was for me and how impressed she was that I sought out genetic testing. It was basically a pep rally for my fight to arm myself with every available resource. I say that not to toot my own horn (toot toot!) but to encourage those of you reading to really do your research and push your doctors. Find the right health care providers for you. It saved my life in so many ways.
My next steps are to see the genetic counselors again. I have not seen them since October 2014 and much has happened since then - for me and for the ATM mutation. They are learning new things and it will be good to speak with them.
In the meantime, I am just going to bask in this wonderful news and consider this the close of my breast cancer journey. The cancer is gone and we are done actively treating it and the possibility of its recurrence. Four has always been my lucky number so it is fitting that this chapter would begin and end in exactly four months. Now on to continuing the reconstruction process and the commitment to prevention and early detection advocacy!