Preventative double mastectomy: ‘I gambled for my life’

Special to the Fort Mill TimesOctober 29, 2013 

October is Breast Cancer Awareness Month. Every week this month we’ve featured a story about a breast cancer survivor. This is the final installment.

It’s not every day that you decide to have a perfectly healthy part of your body removed.

This is the year that I made that decision, and I’d like to tell you why.

I am 43 years old, and have four sisters and two brothers. Three of my four sisters have had breast cancer. Susan was diagnosed in 2005, at age 51, and had a lumpectomy and radiation. This was followed by five years of Tamoxifen, a cancer prevention pill, which caused her many unpleasant side effects, such as hot flashes, memory loss, weight gain, joint pain, brittle hair and dry skin.

Mary was diagnosed in 2009, at age 50, and endured lumpectomy, chemotherapy, radiation and Tamoxifen, along with multiple surgeries to treat a serious infection after the removal of her chemo port. Marty was diagnosed with breast cancer in the fall of 2011, at the age of 49. Because of Marty’s dense breast tissue and pervasiveness of the cancer in one breast, she had a double mastectomy and reconstruction done immediately. Then it was Mary’s turn again. This spring she was diagnosed with stage 4 metastatic breast cancer, with cancer found in both lungs, a rib and one kidney. She has undergone more radiation and chemo. The cancer responded well, but it was very difficult on her body.

She has been told that while they hope to be able to give her several years with a good quality of life, the cancer will continue to return.

Because of this family history, I’ve had regular screening for several years now to try to catch any sign of cancer as soon as possible. The schedule set up by my doctor included a diagnostic digital mammogram (more detailed than a regular mammogram) each winter, a physical exam with a specialist in spring, an MRI in summer, and another exam with my regular physical in autumn. The goal is that I never go more than three months without some type of monitoring. After my first sister got cancer, the rest of us increased our screening. It’s hard to be under constant monitoring though, especially knowing that it might not be enough.

For Susan and Marty, early detection was enough. For Mary, it’s not working out that way.

I also met with a genetic counselor who updated my risk percentages each time another sister was diagnosed. There are several statistical models that calculate the risk of getting breast cancer. The most commonly used one accounts for only two first-tier relatives (i.e. sisters) who have had breast cancer, and I have three. Best estimates were that I had a greater than 40 percent risk of getting breast cancer in my lifetime. The average woman’s risk is about 8 percent. Even though two sisters have tested negative for the BRCA1 and 2 gene mutations, in the words of my breast specialist, clearly there is something genetic going on in my family.

Our specific mutation has just not yet been identified. I could have taken Tamoxifen for five years and suffered the side effects, but that only cuts my risk in half and I’d still be left with a much higher risk of getting breast cancer than most women.

You can add into the mix that I, like my sisters, also had extremely dense breast tissue, which makes it more difficult to diagnose breast cancer early. This summer my routine MRI found a 6 millimeter mass that was not there the year before, and required an MRI guided biopsy to find out it was benign. Every 19 seconds, somewhere around the world a case of breast cancer is diagnosed among women. The two weeks I spent thinking I might be one of those women are ones I would not care to relive.

I have a wonderful husband and three beautiful daughters, age 17, 15 and 10. I would like to be alive and healthy to see their lives unfold. So, on the recommendation of my specialist, and with full support of my husband, I decided to have a preventative double mastectomy. In simpler terms, I decided it was time to remove my breasts before they got the chance to kill me.

Many people have commented that this must have been a very difficult decision to make. In reality, the decision was the easy part given all the information we had. The hard part was actually kissing the girls, getting in the car that morning, and walking up to the surgery desk to say, “Good morning, I’m Sarah Heins, and I’m here for a double mastectomy.” It’s definitely been more painful than I expected, and it’s hard to take the time to slow down and recover. But staying on a breast oncology floor in the hospital made me realize how lucky I am to be able to emotionally and physically face this surgery cancer-free, and go home to simply recover without having to follow it with chemo, radiation and fear of further cancer.

The other comment I’ve heard often is that I’m very brave. Honestly, in the time leading up to the surgery, I felt anything but brave. I felt afraid of breast cancer with its probable treatments and possible mortality. I felt afraid of the surgery, its risks, and recovery. I even felt afraid of what others’ opinions would be about my choice. During the pre-op preparations that morning, I texted frequently with a couple of girlfriends to calm my growing anxiety. Were it not for their humor and reassurances and the calm and loving presence of my husband, I might have been found in front of the hospital, hospital gown flapping, hailing a taxi at 6 a.m.

Now a few weeks after the surgery, in which I had a double mastectomy and the reconstruction process was started, I’ve realized that perhaps there was some bravery involved, or at least some determination. Without that I might not have asked the questions, done the research, held the insurance company accountable for coverage, or gone through with the surgery.

Has it been easy? Not at all. Is there a chance that I might never have gotten breast cancer? Absolutely. My oldest sister Anne is 61 and has never had even a blip on a mammogram. But I am not a gambler, and the relief I feel, knowing that my risk of getting breast cancer is now next to nothing, is tremendous. This choice provides no guarantee of the long and happy life that I hope for, full of love, laughter, family, friends, and good health, shared with the love of my life.

But I can rest a little more easily each day, knowing that I chose to nearly eliminate my high risk of breast cancer, just like I choose to exercise regularly, eat well most of the time, and try to be a happy person. I know that I’ve made the right choice for my family and myself.

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