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Seven years ago, after a lumpectomy, my mother completed her chemotherapy and radiation treatment for breast cancer. She followed that treatment with five years of Arimidex, an estrogen-lowering drug. Statistically, based on her Oncotype DX results and after all of her treatments, she still has an 18 percent chance of dying from breast cancer within 10 years of her diagnosis.
About two years into the Arimidex treatment, my mom called me, more than a bit discouraged. She had been experiencing joint and bone pain on a consistent basis from the treatment, and she was having trouble writing. The chemotherapy drug, Taxol, had already caused her to lose much of the sensation in her feet and toes. Now the Arimidex had done something similar to her hands. She found it difficult to write, unscrew lids, play the piano or type at the computer. She said, “These treatments may save my life, but they sure aren’t a great answer to breast cancer. You don’t want to get it in the first place.”
That’s when I started thinking about a prophylactic mastectomy, also known as preventive mastectomy.
Several years later, I’ve made the decision to do it. These are the factors I found continually coming to my mind in the decision-making process:
1. Risk. No one can tell you what your exact risk is for getting breast cancer. Even the average woman has about a 1 in 7 chance of getting it at some point in her life. To me, that’s already relatively high risk, especially when compared to other cancers. Family history can increase that risk. Having close relatives who had pre-menopausal breast cancer automatically puts you into a high-risk category. Both my mother and her only sister have had breast cancer. My mother was postmenopausal in her early 60s upon diagnosis. My aunt was premenopausal. She had it bilaterally (in both breasts) and after a recurrence, ended up with bilateral mastectomies. One of her daughters had a lump with atypical cells removed when she was in her 20s.
Risk can also come from the paternal side. My dad had four brothers and no sisters, so there is no good point of reference there. But both of his dad’s sisters (my great-aunts) had uterine cancer in their 30s and breast cancer in their 40s. Both had double mastectomies by the time my parents were married.
Given my family history and dense breast tissue (more of a diagnostic issue than an actual risk issue), I have at least double the normal risk—and probably a bit more than that. If I had a sister, that might give me more information. If my dad had any sisters, that would have provided more to go on as well. The fact is, you can’t precisely know your actual risk, but most women can ask a few questions and get a general sense of their potential risk.
I don’t know if I have “the breast cancer gene.” People are usually referring to BRCA1 or BRCA2 when they refer to the breast cancer gene. However, there are at least four other genes related to breast cancer that we know of and more than that are under study. When my gynecologist mentioned possibly having the genetic testing done, I decided that even if I did not have one of the BRCA mutations, I could well have another one they don’t test for yet, and my risk was still high enough with family history for me to want to do something about it.
2. Effects of Treatment. Certainly many women make the decision to have a prophylactic mastectomy based mainly on the fear of dying from breast cancer. This is not true of me. I am not too worried about dying of breast cancer. I figure that if I’m vigilant in my screenings and self-exams, I’ll likely catch anything before it’s too late for life-saving treatment.
But the life-saving treatment is the problem for me. As my mom said, the treatments are not great answers to breast cancer. You’re looking at biopsies, surgery (maybe several, including mastectomy) and possibly chemotherapy, radiation and long-term treatment with some estrogen-lowering or blocking drug. These treatments are long, arduous and can have lasting consequences that negatively impact your health and quality of life. And this is to say nothing of the emotional/psychological effects that being a cancer survivor can bring.
I used to think that if you caught breast cancer early, you wouldn’t have to go through the worst of the treatments—likely, just a lumpectomy and maybe radiation. But my mother had a clean mammogram six months before she found the lump in her breast. She caught hers in the early stage. But stage is only one factor. The type of tumor is another. Her tumor type was extremely aggressive and had a very high chance of recurrence. That’s why her treatment included chemo, radiation and the Arimidex for five years afterward.
Some women may get through the treatments without many lasting side-effects. But my own family and friends are my personal reference points, and I’ve seen and heard enough to know that it’s not what I want. Besides the acute effects of chemo that people are familiar with (nausea and vomiting, weakness, infections, lethargy, mouth ulcers, hair loss, etc.) and that go on for months, there are chronic effects. From her Taxol treatments (most likely) my mom still has odd sensations in her feet and toes. She cannot tell if shoes fit properly. She always feels like she’s walking on rocks. Every night she has a tingling and a dull ache in her toes that lingers until she falls asleep. From the Arimidex, she developed the hand and finger issues I mentioned earlier. Probably from the same treatment, my mom’s bone density decreased. She broke a rib shortly after radiation, just from coughing. She can no longer sing well, and she is not sure why—if it’s from all of the retching or one of the medications. And she had her lifetime maximum dose of one of the most effective chemo drugs, Doxorubicin. This drug is known to cause damage to the heart. If my mom needs chemo for a recurrence or another cancer, she cannot have this particular drug again.
Lumpectomy, or “breast conservation,” followed by radiation treatments, although considered relatively noninvasive, often has side effects as well. While the procedure sounds less invasive than a mastectomy, and while the approach may successfully remove the cancer, there may be significant aesthetic changes. No matter how carefully the surgeon removes the lump, the breast will be deformed, often seriously. Also, radiation not only kills cancer cells, but it also destroys normal cells and can add substantially more deformity, especially from shrinkage. The breast tissue salvaged in this technique may actually not be useful in the event a woman desires reconstruction due to the asymmetries created.
I don’t want to imply that cancer treatment is a bad thing. It may have saved my mother’s life, and it definitely gave my dad several good years after his diagnosis of sarcoma. Most recently, a targeted chemo agent brought the hundreds of tumors in my friend’s lungs to non-detectable levels—after being diagnosed with stage 4 lung cancer. It did the same for another friend’s daughter with neuroblastoma. I am grateful for these treatments. I just don’t think any of us would elect to have them if we could avoid it.
3. I Want Options. Right now, I can choose a skin-sparing mastectomy or a nipple- and skin-sparing mastectomy. After a breast cancer diagnosis, you may lose those options and you do whatever you have to do. I want to do this while I still have choices.
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