Why there may be fewer breast cancer 'survivors' in the future

If women and their doctors ultimately follow the advice of the U.S. Preventive Services Task Force and delay their first mammogram until the age of 50, we will likely hear fewer stories of breast cancer “survivors.”

That’s not because there will be more women who don’t realize they have breast cancer until their tumors are too big to treat (though that is probably an inevitable consequence of pushing back the starting age by 10 years).

Rather, it’s because a good number of the women who are diagnosed with breast cancer in their 40s after getting a mammogram – and subsequently go on to “beat the disease” after grueling treatment – would have wound up cancer-free even without treatment. But if they had never known that the cancer was there in the first place, they wouldn’t describe themselves as cancer “survivors” when it was all over.

This prediction comes from Nancy Berlinger, a healthcare bioethicist at The Hastings Center, a bioethics research institute in Garrison, N.Y., who was quoted in Saturday’s story about the downside of widespread cancer screening.

If it comes to pass, it may be seen as evidence that the task force is off its rocker (to put it kindly) by the legions of breast cancer survivors and other vehement critics who assailed the new mammography guidelines when they were released last week. But that won’t necessarily be accurate, Berlinger said.

She points out that even women who are diagnosed with stage 0 ductal carcinoma in situ are treated as if they have breast cancer. Doctors know that some of these cases would never become life-threatening, but since they don’t know which patients fall into that category, all women are treated aggressively. Though that strategy has certainly saved lives, for some women it does more harm than good.

“None of the things we do in cancer treatment are without burden,” she said. “They’re very harsh things to do.”

There are other downsides too.

“Once you make somebody a cancer patient, you can’t un-make them,” Berlinger said. Even for survivors, “that’s a heavy burden in and of itself.”

-- Karen Kaplan

Comments

[Rochelle]

These stories trying to justify the government trying to slowly change guidelines (with the home of not paying of them in the future) are dangerous and insulting to breast cancer survivors. This wording may just be semantics to you but to us women they are life and death. Pathetic.

[VICTORIA BROWN]

I CANT EVEN IMAGINE THAT COULD EVEN HAPPEN TO SOMEONE!!!
HOW SAD I GLADE MY FAMILY ISN'T GOING THROUGH THAT!!!!!!!!

[Dr. H]

"“Once you make somebody a cancer patient, you can’t un-make them,” Berlinger said. Even for survivors, “that’s a heavy burden in and of itself.”"

Interesting logic. It would also follow that once you allow a patient to become a cancer fatality (by loosening the guidelines for early screening), you can't un-kill them. Which is the heavier burden? I'll take the burden of being a cancer patient, thank you.

[Jody]

I believe these are important discussions to have, assuming people can be reasonable.

Sure, it's easy to say, 'Just mammogram all women from age 20 onwards.' But the tests are painful, costly, not foolproof, and don't necessarily lead to a huge increase in the survivability of breast cancer.

Most breast tumors are found by women, themselves, but not as part of a routine, monthly breast exam. Rather, even those women who do regular self-exams, typically discover a lump by accident. They then seek medical care, such as a mammogram.

I did the "Gail Model" (Breast Cancer Risk Assessment Tool) for myself. My risk is elevated, at 1.3, but still doesn't fall within the range to be considered higher risk. And that's the point of the new guidelines. Women of "normal" risk can wait until age 50 to begin regular mammograms. I don't think this is evidence of any conspiracy theories, or a general disdain or disrespect for women (of any age). A cancer diagnosis is devastating to the patient, and the extended family members. Cancer treatment can be life-threatening, in and of itself.

[Beth]

A number of countries in Europe don't recommend mammograms until age 50 and then every few years rather than every year. Yet mortality rates from breast cancer aren't any worse in those countries than in the U.S.. I'll be 40 next year, and I plan to go for my annual mammogram because, well, the media and my doctor have made me terrified to skip it. But I also work in public health and know from extensive reading that women elsewhere aren't dying of breast cancer more than we are. And this is the issue: we (myself included) are worked up over annual cancer screening because we are afraid, not because there is any scientific evidence that our lives are being saved more frequently than if we didn't have it as often. I guess I just wish that I was making my medical choices based on something other than fear.

[Too Shy]

I was diagnosed at age 38 and again at 42. I have ZERO elevated risk. Neither my mother or sister. Neither of my grandmothers. None of my five aunts or seven female cousins. Nothing.

Breast cancer is affecting younger and younger women. Why in the world set the use of the primary detection tool older?!