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Colleen’s Story: High Risk for Breast Cancer? Come Up With a Plan!

Three years ago, Colleen Boraca’s first mammogram revealed something suspicious – 20 years after her mother passed away from breast cancer. This is Colleen’s story in her own words.

Three years ago, I received a HUGE wake-up call. During my first mammogram, a suspicious mass was found that required an additional mammogram. When it did not prove conclusive, an ultrasound was done. Then a needle biopsy followed by a surgical procedure, an excisional biopsy.

Although the results were not cancerous, the whole experience shook me. Twenty years ago, my mother lost her courageous battle with breast cancer. Even though I consider myself high risk for developing breast cancer because of my mother’s history, I learned something vital the past three years. People who have an increased likelihood of developing breast cancer can be proactive.

My surgical biopsy revealed that I had two conditions which increase your chances of developing breast cancer: lobular carcinoma in situ (LCIS) and atypical ductal hyperplasia (ADH). Although the entire mass was removed, the surgeon recommended I talk about prevention options with an oncologist. Interestingly, the only appointment the oncologist had available for months was on my birthday, but I saw the appointment as an investment in future birthdays.

When I met with the oncologist, because I am pre-menopausal, she recommended a regime that includes tamoxifen, a medication that would reduce my chances of developing breast cancer by 50% if taken for five years. Of course, I had heard of tamoxifen — my mother took it, as many women do, after completing chemotherapy and radiation therapy to prevent a recurrence. I had no idea it was also used as a preventive measure for people who are high risk. We spent a long time talking about the benefits of tamoxifen as well as the potential side effects, and there are many.

Strangely, I was looking forward to taking my first pill of tamoxifen. Not because of the depressive symptoms that I exercise every morning to reduce. Not because of all the cardigans I bought in preparation for the anticipated hot flashes that come with tamoxifen. Once I took my first pill (of 1,825), the plan was in place. Taking tamoxifen can be challenging. Although I experienced few side effects at first, my legs and knees became stiff after about six months of being on the medication. It felt like I was walking in mud and at times, I could barely move. Fortunately, much can be done to control side effects. My oncologist increased the amount of Vitamin D and magnesium I take. Additionally, she recommended I drink tonic water before bed (without gin). All of these steps, along with physical therapy, have helped. Although not being able to walk well was challenging, especially with small children, it pales compared to the side effects I saw my mother go through with chemotherapy and radiation.

A few weeks ago, I had my second mammogram while on “the plan.” Like the first one after starting tamoxifen, it came back totally clear. The plan is in place and hopefully will prevent the development of breast cancer. Of course, it is not 100%, and I will deal with anything that comes my way.

Through the process of advocating for myself, I learned a lot. Here are some of the main points:

  • Be patient. Coming up with a truly comprehensive prevention plan involves seeing multiple people. I met with radiologists, surgeons, oncologists, geneticists and nutritionists. Top-notch medical providers are frequently booked out for an extended time. Do not get frustrated or disheartened — the wait will be worth it.
  • Take others to appointments. Medical appointments can be overwhelming, especially when the topic is your risk for the disease that killed your mother or someone you love. I made sure to always bring someone with me as it helps to have another set of ears hearing what medical professionals are saying. I am fortunate to have a strong support network who came to appointments. One of my friends has gone through breast cancer and knew insightful questions to ask about tamoxifen that could only come from a survivor. My husband helped discuss treatment options during appointments, knowing what would work best for our family. I love the memory of one of my friends helping a geneticist draw my family tree of cancer history. We have started a tradition of “Mammograms and Martinis” to make appointments more exciting.
  • Talk about your experiences. Before my biopsy, I was hesitant to tell anyone what was happening. In my head, if I talked about it, things would become real. I began telling my friends and colleagues, and it was amazing how many had gone through something similar. One particular work friend had gone through the same surgery with the same surgeon one year prior. She was able to talk me through step-by-step what to expect the day of surgery which was invaluable. By talking about it, I made peace with what was happening, and I definitely think it helps to have more people praying for you or sending well wishes. Additionally, I belong to Facebook groups of women taking tamoxifen. It helps me understand side effects and brainstorm ways to handle them.
  • Be bold. Truly coming up with a prevention plan will require you to step out of your comfort zone. I have known about genetic testing for inherited mutations for the past 20 years. I typically seek out all information when facing medical challenges, but I had no desire to do that test and learn the results. Whenever I was asked if I had done it, I would respond something like, “What is the point? I already know I am high risk.” Well, the point is that my risk is substantially higher if I am a BRCA mutation carrier, and that could result in a different plan. I finally faced my fears and got the test, and the whole experience ended up being easier than expected.
  • Be open-minded. When I initially heard that I had a suspicious mass, I decided that my next step would be a double mastectomy. No questions asked. It was not until multiple doctors discussed why that was not the best option for me that I finally changed my mind. Even if you think you know what your plan should include, keep an open mind when meeting with the experts. Your plan may also need to be adjusted. If the side effects of tamoxifen become too overwhelming, dosages can be lowered. Make sure you go to an oncologist who takes your concerns seriously.
  • Take care of yourself. The process of coming up and sticking with a prevention plan is an emotional roller coaster. Make sure to take care of yourself. Exercise, talk with a counselor, cry, spend time with your people, pray – whatever works for you. Do not let people make you feel weak because of it. It is tough going through this.

Shortly before she died, my mother told me that “If there comes a day when I am no longer physically with you, I want you to know that I tried everything I could to be here as long as possible.” How lucky I am to have a parent who felt this way, and how grateful I am that I can say the same thing to my kids. Having a prevention plan and sticking to it is the first step.

Read about Colleen’s experiences taking tamoxifen here.

Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.