Study: Doctors Suck At Giving Breast Cancer Patients Good Information

In the fight against breast cancer, one of the best weapons a woman can have is knowledge and correct information about her diagnosis, treatment options, and prognosis. Unfortunately, according to a new report in the Journal of the American College of Surgeons, doctors are wildly unreliable about arming women with even the most basic of information, making it difficult for patients to make informed decisions about their own bodies. But to anyone who’s ever known someone with breast cancer, this isn’t a surprise–poor doctor/patient communication has practically become standard operating procedure when it comes to treating this deadly disease.

The study indicates that doctors are prone to educate women about the latest advances, based on their own knowledge, and rarely stop to ask patients if they understand, or even what they want. Only about 56% of the survivors who participated in the study were fully aware of the comparative survival rates of a mastectomy vs. a lumpectomy, and fewer than half of patients recalled ever being asked how they’d like to proceed with treatment. Which is upsetting, when the disease in question isn’t one with a cut-and-dried cure, but rather, one that’s treated with a series of potential options that may work for some, and be disastrous for others.

Back in October, we focused on breast cancer during our Think Pink week. As part of our attempt to capture the real experiences of actual women, I interviewed my grandmother, who is a breast cancer survivor living in rural Oregon, and who never felt adequately informed of her choices. Here’s an excerpt from that interview:

First, they told me to do chemo. And shit, I didn’t know what to do. So I did that… Chemo was the worst. My hair never came back the way it was. I have never been the same since. I would never do that shit again. And you know what? Even after going through chemo, I still had to go get surgery. Because it still came back.

So I just cut them off… And now they’re not the same. And every time I look in the mirror at that horrible scar tissue, which isn’t even scar tissue, it’s half of my goddamned nipple that they didn’t remove, I think about that. About how I had to do chemo and still ended up like this…

If I knew what I know now, I would have skipped chemo, saved the money, and just lopped them off the first time around and gotten some fancy new boobs. I didn’t know that, and now, I have to go through my life feeling like I have a deformed body.

Of course, that’s just one story. But it’s not a rare one–following that story, we received comments and emails from many women who’d experienced similar frustrations over the perception that they’d been strong-armed into a treatment that wasn’t right. And if this study is any indication, more than half of breast cancer patients are in the same boat.

Of course, women who have access to the internet (my grandmother does not–and, while it’s easy to assume everyone does, plenty of women in rural areas have little to no ability to go online) may have the upper-hand, because they’re able to gather supplemental information outside of the stressful environment of their doctor’s office. But should cancer patients really be the ones in charge of their own education?

Doctors and surgeons are under oath to do no harm–but if withholding or simply glossing over information to this extend isn’t harmful, I don’t know what is.

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