In the wake of the recent controversy and confusion over proposed new guidelines cutting down on how often one should have a mammogram to screen for breast cancer, “Be Vigilant!” seems to be the rallying cry for women. Here, in a Lilith web exclusive, is one contrarian view of some commonly held wisdom. The opinions reflect the experience of this writer only, so… be vigilant and question even what you are about to read! It’s good practice for dealing with other medical matters, too.

Jewish women, as a group the best-educated females in the western world, are also among the most sophisticated medical consumers. We represent a pretty privileged cohort, with access to information and (because we tend to live in urban areas with many specialists) often access to the best medical care as well. We have to remember to use our smarts, be attentive to our own bodies and ask a lot of questions.

Breast-Cancer-Advice Refusenik

Judith Beth Cohen

I had four maternal aunts who died of breast cancer before age 50, so it’s not surprising that I began obsessing about cancer at an early age. When a friend was diagnosed with breast cancer at age 26, I decided it was time to start having yearly mammograms and to examine my breasts diligently every month. At 30, a doctor told me, “You have lumpy breasts,” and my fears skyrocketed. I consulted with specialists with comforting names like Dr. Cope and Dr. Love. Dr. Cope assured me that I did not have breast cancer, but he could not promise that I never would. “Maybe when you’re 80,” he said. I felt reassured. Dr. Love extracted fluid from my breasts and the lumps disappeared like magic; I left her office in a happy, lump-free daze. The years passed; my luck seemed to be holding. In November of 2006, it finally happened: I was diagnosed with breast cancer. I was 63, a long way from 30; not as old as 80.

I had a mastectomy in December. Since I’d spent years fastidiously monitoring my breasts and had helped three close friends through breast cancer, I thought I knew all about this disease. But when personally confronted with breast cancer’s complexities, I was shocked to feel very much at sea. I found that much of what I was told, and read about, was wrong for me. I needed to summon my own voice, trusting it above the flood of institutional givens that so often were presented as the One True Way. I feel called upon to challenge the following “truths” that I heartily disagree with. You can disagree too. Use your strengths, trust yourself, and figure out what’s right for YOU.

1. Your annual mammograms will diagnose breast cancer. Mine didn’t. Don’t be lured into feeling safe; screening mammograms never claimed 100% certainty, even though I always wanted to walk out of my annual mammogram and think, “Phew! Safe for another year!” Despite the current controversy about the usefulness of annual mammograms, I would never forgo this annual procedure. You have to be in touch with your body—literally. Mid-year I felt a very vague, tingling sensation and insisted (it wasn’t easy!) on an ultra-sound. My primary-care physician said she felt nothing. On the ultra-sound, though, a tiny black dot showed itself. The radiologist did a needle biopsy and said, “Don’t worry. It’s tiny, just .03 centimeters. It’s just a nuisance.” I will never forget those words. It turned out to be 1.3 centimeters, it was invasive and it had begun to move. (!) Given that we do not know the biology of my cancer, I don’t know if it was there at the time of the screening mammogram—but you need to be aware even if the doctor is blowing you off!

2. A mastectomy is devastating. Not for me, though Paid clinical trials show that the majority of women find the prospect of having a body part surgically removed can be psychologically traumatic. The only hard part for me was the one night I spent in the hospital. A week later I went to Mexico for a winter vacation. For me, at least, a prosthesis is fine! You stick it in the pocket of your bra and it feels like real flesh; it even has a nipple. Many of us stuffed socks or tissue into our bras when we were young, and today it’s impossible to find bras that aren’t padded, so why is having a fake breast such a horror show? Having one breast has not spoiled my sex life, nor has it affected my exercise or activity level. My husband’s comment: “It doesn’t matter to me at all—I’ve never cared that much for breasts.”

3. Breast reconstruction is the way to go. My (wonderful female) surgeon automatically scheduled me to see a plastic surgeon even before the mastectomy, so that both procedures could be done at the same time; this is very common. Breast reconstruction is viewed as a huge advance for women, especially in light of how devastating it can be for women who are undergoing prophylactic mastectomy because they are carriers of the BRCA gene; who would decline it? Well, I did decline it, and felt like a very bad patient. I’m athletic; athletic women can give up more than they think, though mastectomy is very different now than it was for friends of my mother who had radical mastectomies in the 1950; the same with changes in reconstruction.

[Editor’s note: The American Cancer Society website, www.cancer.org, discusses risks and benefits of different kinds of breast reconstruction.]

4. Chemotherapy makes you sick. The day after chemo I felt fine, because I’d been pumped full of steroids. The anti-nausea drugs worked, and I never vomited. I got mouth sores, but there was an easy remedy. I was even able to give myself the injections – at home – to raise my white cell count, something I’d been told I couldn’t do. Six months after chemo I was trekking the hills of northern Thailand.

5. Join a cancer support group. I felt pressure to see a social worker at the hospital for individual counseling and to join an ongoing support group. And then I thought, duh, I have four close friends who have had breast cancer – that IS a support group….

6. Don’t hide your disease. I got a lot of advice of the Alcoholics Anonymous genre: Be out there! Tell people what you’re going through! And this fits with my natural temperament. But I wish someone had told me that not going public might also be a good idea. I hated having everyone treat me like an invalid. I hated that everyone at work knew. I do not call myself a “breast cancer survivor.” I feel it trivializes survivorship. Plus, who knows if I’m a survivor?

7. Jewish genes are the worst. Man oh man, everyone told me this, and I believed it. When I did get cancer, it turned out not to be the genetic kind, despite my four dead aunts. Late in the game, my oncologist told me that new studies have shown that the highest percentage of BRCA mutation is found in non-Jewish Hispanic women. (Geneticists think that Jews expelled from Spain who landed in Latin America tended to marry within particularly tiny, hermetic communities, deeply narrowing the gene pool.) So, okay, these women descend from Jewish stock, but they don’t know it. When I learned about other groups with bad genes, it lightened my load.

8. Cancer makes you a better person. The ubiquitous Think Positive movement doesn’t work for me. I totally agree with Barbara Ehrenreich here (author of Bright-Sided:How the Relentless Promotion of Positive Thinking Has Undermined America). I need to hear the truth: Cancer is a pain, it required a ton of my time, resources and energy. And it may shorten my life. If anything, cancer has made me a worse person. I suffer fools less, and I’m less tolerant of bullshit. Those things aside, I’m pretty much the same as I was pre-cancer. Aging has made me a better person, maybe, but not cancer.

Bio: Judith Beth Cohen has written a novel, Seasons (The Permanent Press). Her short stories and articles have appeared in The Women’s Review of Books and in numerous literary publications.