Guest blogger Anne Miano talks about her efforts to be proactive with her health care and how the system makes it tough.
About six months ago, I got a letter from my health care provider asking me to participate in a study. They’d chosen me, the letter said, because my breasts had a significant amount of dense tissue, and therefore, I had a higher than average risk of developing breast cancer.
I stared at the paper and felt a chill. I didn’t know I had dense breast tissue, and I’d never heard this was associated with breast cancer.
I’m no stranger to breast tissue or cancer.
My mother developed breast cancer when I was in graduate school. It was a tumor the size of a grain of sand. Slow-growing and relatively non-aggressive. The doctors recommended a lumpectomy and radiation, which she did. And now, almost twenty years later, she remains cancer-free.
When your mother receives a diagnosis of breast cancer, her life changes. But yours does as well. Not as much. Not nearly. But now someone you care about will live with the specter of cancer. Because you’re never really cured. After my mother’s surgery to remove the lump, she had several more surgeries to take out suspicious tissue. All benign. But when you’ve had cancer, the doctors become hyper-vigilant. The first five years after her lumpectomy, she had so much tissue removed for biopsies that one breast become significantly smaller than the other. She had breast reduction surgery to rebalance her body.
My mother considers herself lucky. Her tumor was small, the cancer seemingly contained, and she didn’t have chemo. But she still went through a lot. And every year, she holds her breath as she goes to the oncologist for her annual checkup, her ongoing reminder that the cancer could return at any time.
The day my mother was diagnosed, my risk for developing breast cancer shot up, and her doctor told me to make an appointment for a mammogram. I did, and when I went for my session, I explained to the doctor at the university health center what had happened and said, “I guess I’m destined to get it, too.” She told me I was wrong, that my risk was no more than 10%, and so the odds were in my favor.
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Invited to a study
When I got the letter in the mail about the study, I responded immediately, saying, “Yes, I want to participate.”
The study had nothing to do with medication. It was focused, instead, on education: If women with a higher risk of breast cancer were given information about their risk and ways to reduce it, would they take steps to do so?
The health care provider had created a special website, designed to educate women like me. Some women in the study would be given access to the site; the control group would be directed to WebMD. I was delighted to learn that I would have an account on the new site.
I read every page, completed every questionnaire, and discovered my risk for breast cancer, according to the site, was 3.7% over the next five years and 7.9% over the next ten. The average woman’s risk is 1.4%, so I was more than twice as likely to develop breast cancer.
I also learned about breast MRIs for detecting cancer and medications that reduced risk. Because MRIs are only recommended for women with a much higher lifetime risk, over 20%, they didn’t make sense for me. But I was curious about the drugs, Tamoxifen and Raloxifene, which have been shown to reduce breast cancer risk by half.
I read about these drugs on the website and discovered: 1) Raloxifene is used most often to treat osteoporosis and can only be taken after menopause; and 2) the drugs work by “starving” cancer cells of estrogen, the food they need to grow, by blocking their estrogen receptors. With either of the drugs, I’d have to take a pill every day, and they both come with some nasty side effects, including a higher risk of stroke. Moreover, they’re expensive. Raloxifene, which I investigated because it seemed to be a bit more benign, would cost me about $100 per month.
I printed out my reports from the site, showing my breast cancer risk and “Questions to Ask,” and went to see my doctor. I wanted to discuss my options with her.
The limits of health insurance
Here, I’ll interrupt my story and tell you about my health care coverage. I’m a freelance writer, and I buy my own coverage. When I did work for a company, I belonged to a health care cooperative, and I decided to continue my membership. I didn’t have the option of keeping the plan I’d had when I worked for a corporation, which was a pretty darn good plan. Although my membership fees are the same, about $400 per month, I have a $7000 deductible, and nothing is covered until I reach that amount in out-of-pocket costs. I’ll get back to this later.
When I called my provider to find out how much Raloxifene would cost if I bought it through their pharmacies and if it would be covered by my plan, they refused to tell me. I had to have my doctor put in a request to get the cost. But when she did that, she was told that I couldn’t take Raloxifene until I’d tried Tamoxifen and found it ineffective.
“Ineffective?” I asked my doctor in email. “Wouldn’t that mean I got cancer?”
“No,” my doctor wrote back. “It means that you can’t tolerate side effects.”
It seemed like a crazy way to go about choosing medication.
We know Tamoxifen is nastier, but I’d have to try it first and get really sick or maybe have a stroke before my doctor could prescribe an alternative.
“What if I pay for it myself”? I asked. She responded, “You shouldn’t have to.”
Fortunately, I have a great doctor. (If you’ve read my earlier posts, you know I kicked my previous doctor to the curb and carefully chose a new one.) She recommended that I see an oncologist. That way, I could get better information, find out whether I should take medication, and if I should, maybe an oncologist would have more freedom in prescribing drugs.
Last week, when I showed up at the oncologist’s office, she was a little surprised to find out I didn’t have cancer. I told her about the study, showed her the reports I’d printed, and explained that I wanted her guidance on the best way to take action to reduce my risk. At that point, she seemed to warm up and enjoy having the opportunity to talk with a patient about prevention, something, I imagine, she doesn’t get to do very often.
The oncologist asked me questions about my family history and my lifestyle (did I drink, smoke, exercise, etc.?), and then she left me for about 10 minutes to input my information into a risk assessment model that she said was better than the one on the website. When she returned, she told me that my risk was lower than what I had thought, about 2.6%.
The reason, she explained, was…well, you can probably guess: I’ve never smoked, I eat well and exercise regularly, my stress level is low, and I’ve never been overweight. In fact, without knowing it, I’ve been managing my risk for most of my life. Not only for breast cancer, but for a long list of other things, including heart disease, which actually plays a bigger role in my family history.
But since I wanted to do more, I asked about genetic testing, and the oncologist said she didn’t recommend that for me. Medication? Not that either. My breast cancer risk just wasn’t high enough to justify taking on the added risk of stroke.
I’d gotten the information I needed to make a wise decision
I left the oncologist feeling better. Not because I didn’t have to take drugs with horrible side effects or because my risk was lower than I’d thought. But because I’d gotten the information I needed to make a wise decision. Which is how all of us should be able to approach our health care. We should all have access to clear information tailored to us as individuals that lays out facts, choices, and recommended next steps – like I got on the website. Then we should be able to talk about that information with our primary care physician and ask questions. And if our doctor doesn’t have the answers we need to make informed decisions, she should refer us to another doctor, probably a specialist, who does.
In my case, this fact-finding journey enabled me to choose with confidence not to take expensive medication that wouldn’t make me healthier and to continue managing my risk as I’ve been doing. This is preventative medicine – having conversations with our doctors before we get sick. And all of us should have access to it. Not only does it help us each live healthier, it keeps our entire health care system running more efficiently.
But strangely, our health care system isn’t set up for prevention. In fact, this kind of preventative medicine is downright expensive. Prohibitively expensive. My visits to see my doctor and the oncologist each cost me $250. That’s five hundred bucks right out of my pocket. I can afford that. (And not because I didn’t choose to buy an iPhone.) But most people can’t.
Which means the majority of women who joined me in the study, even if they wanted to, won’t be able to take action. No matter what information they discover on the website or how high their risk for developing breast cancer, they won’t be able to afford MRIs or medication.
But that wasn’t part of the study.
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Read Anne’s saga of enduring hot flashes and her discovery of low-tech solutions for the dreaded hot flashes.
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