Those dreaded words 

My daughter's breast cancer

My daughter’s breast cancer
When I was in the sixth grade, I gave a report on cancer. I remember because I had to read it out loud, and when I said the warning sign, “lump in your breast,” I was appalled by the snickering over the word “breast.” Today, I’m appalled that every two minutes a woman is told she has breast cancer. Recently, I heard those dreaded words: “It is malignant.” Sitting in the surgeon’s office, dazed and terrified, I tried to take in all the information about “local” and “systemic” treatment for “infiltrating ductal carcinoma.”
Breast cancer is not simply an individual medical issue. It’s a public health issue, an “epidemic.”

 I heard my daughter whisper, “Mom? Are you all right?” It seems she was more ready for the news than I was. After all, she had found the lump in her breast while in the shower, and quickly got it checked out. But my daughter, my child, has joined the growing number of young women with breast cancer, and I feel like I imagine every parent feels: No! Why couldn’t I protect her? Why can’t I go through it for her? I even had a guilty, superstitious feeling that I had somehow caused it by my breast cancer activism. The surreal experience continued as we saw the oncologist that same afternoon. He was a kind and gentle man, asking lots of questions, explaining things. He calmly told me that my risk for breast cancer is greater now, so I might want to consider taking tamoxifen. Or there is always prophylactic surgery: removal of my breasts, maybe remove my ovaries. I silently screamed no, but answered him with a quiet evasive: “I’m from Indiana.” (My daughter moved away about three years ago.) This wasn’t the time to argue that I knew most major breast cancer advocacy groups had opposed the approval of risky tamoxifen as a “prevention” tool for otherwise healthy women. Anyway, I was feeling queasy and disoriented as I listened to the options he gave my daughter, all versions of “slash, burn and poison.” My daughter’s tumor was fairly large and fast-growing, making it Stage II a. She decided to try chemotherapy first, to shrink it, followed by a lumpectomy (surgical removal of the tumor and a small ring of normal tissue around it, called margins). Lumpectomy and radiation are prescribed as a “package.” Her other choice was mastectomy (surgical removal of the whole breast), followed by chemo. First the surgeon did a lymph node biopsy with axillary dissection — a painful cut through the armpit. He removed 10 lymph nodes “to be safe.” We breathed a collective sigh of relief when, days later, he told us they were negative, the best indicator that she will do well. Chemotherapy, which is used “to increase the cure rate,” works by seeking out and destroying fast-growing cells, but since it can’t differentiate between cancer cells and normal cells, healthy cells are also killed, including the hair follicles and the white blood cells that protect against infection. I hate that my daughter has to go through all this pain and fear. I hate that she suffered debilitating effects of the chemo — extreme fatigue, nausea, mouth sores and more. (I read somewhere that 50 percent of the oncologists would not use chemotherapy for themselves.) She was told that the side effects are often worse for younger women. They offered a new nausea drug that cost $80 per pill, but it gave her a severe headache and made her nausea worse. Both her white and red blood cell counts dropped, and she needed injections for both. One injection cost $6,000! With her fifth round of chemo, she had excruciating bone pain and a terrible rash. She felt so awful, in fact, that she refused the final three treatments. After she decided to quit chemo, her oncologist told her that the first four treatments were the most important anyway, and the last four (with a different drug) would only increase her “cure rate” another 3 percent or so. In fact, her tumor had pretty much melted away, and the surgeon removed it with clear margins. Believe me, I am very grateful for my daughter’s treatment and results. I’m also very grateful she has medical insurance. Tragically, uninsured women are more likely to be diagnosed at a later stage, and 40 to 60 percent are more likely to die than privately insured women. I’m thankful she has a say in her treatment, and she wasn’t subjected to a savage Halstead radical mastectomy the way women 10 to 15 years ago were. We have made progress, but we still have a long way to go if we’re ever going to “wipe out breast cancer.” As author Barbara Ehrenreich wrote about her breast cancer experience: “What it is, along with cancer generally … is an abomination, and to the extent that it’s manmade, also a crime … what sustained me through the ‘treatments’ is purifying rage, a resolve, framed in the sleepless nights of chemotherapy, to see the last polluter, along with, say, the last health insurance operative, strangled with the last pink ribbon …” Breast cancer is not simply an individual medical issue. It’s a public health issue, an “epidemic.” It’s an appalling disservice to women to single-mindedly “race” for the elusive medical “cure,” but ignore opportunities for primary prevention. We can’t protect our daughters from breast cancer until we address the cause. For more information: Stefanie Miller represents Indiana Alliance for Democracy and is a member of Breast Cancer Action.

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