The task force, physicians and scientists who support the findings of the task force are urging people not to overreact to the headlines. Many say it is merely a new way to approach mammography; that the female standard "oh I'm forty, so I have to" and the "one size fits all" approach is no longer valid. They're advocating that the decision should be made by a woman and her physician. The predatory politicians have already moved in to use the debate and the surrounding emotions for their self-serving purposes. Meanwhile, women don't know if they should look for the underlying conspiracy or cancel their screening appointments.
The problems lie in several pivotal areas -1) Not all tumors are created equal and the screening does not change the tumor.
Its very possible that many women who believed mammography saved their lives may have lived without both the mammogram and the accompanying treatment.
As Dr. Heidi Nelson explains in Newsweek -"We’ve come to a point where the ability to detect precancerous cells has outpaced our ability to understand how these cells operate. In many cases women are treated for breast cancer based on precancerous lumps that are only rarely deadly. A better test for certain genetic markers might help researchers understand which precancerous lumps are most likely to turn into a fast-moving cancer, says Nelson, but no test like that exists. For now, doctors treat lots of tumors that may not kill anyone, and women are subjected to a battery of tests that don’t provide many answers. “We can’t advise people at this stage,” says Nelson. “We can only find things.”"
Dr. Michael Cohen of Sloan-Kettering Cancer Center in New York explains that ductal carcinoma in situ accounts for 5 to 60 percent of all tumors in women in their 40s, "It may stay there a woman's whole life and never invade surrounding tissue, but we don't know how to tell the one that won't spread from one that will.”
When looking at mammography and studies that indicate benefits, we have to consider lead time bias and length time bias.
My own mother died in her 59th year of breast cancer. Early on when asked about her death, I often wanted to respond, "I'm not exactly sure when my mother died. I only know it wasn't March 23rd." That response certainly brought about some quizzical looks but what I really meant to say was that the mother I knew did not die that spring morning in 1992. Although that was the day she took her last breath, the cancer and its treatment stole her away by bits and pieces during the three year of treatment. Since age forty, she had never missed a mammogram. The tumor and the aggressive cells it contained appeared like magic, a little over eleven months after her previous screening.
We've steadily improved on how to handle the side effects of radiation and chemotherapy so retrospectively, it is difficult to say what early screening did for her. I cannot help but wonder if her cancer was such that it would have been better not to have known. I wonder - would it have been better to treat the effects of metastasis palliatively once they appeared, perhaps shortening her life but increasing its quality? We will never know. Either way, her mammogram only served as the harbinger of her suffering and death.
2) In order to give everyone a clearer picture of the available information and a better chance at informed decision making, we need to change and clarify the terms we use in reporting and describing cancer.
The sad fact of the matter is - when we are told that early detection saves lives we can't always be sure exactly what that means.
The term survival rate has always infuriated me. Say that term to most anyone and especially a newly diagnosed patient or their family and they hear the word cured. A ninety percent survival rate simply means the 90 out of 100 people are still alive five years after diagnosis. It can't tell you if 45 of those people died in years six or that another 45 were dead by 10. It doesn't tell you if anyone in that number is still being treated or was pronounced in remission. And it certainly doesn't tell you anything about the measures required to maintain that life.
The terms disease free survival or progression-free survival provide only a bit more clarity. Disease-free sounds like it should mean just what it says, but it doesn't. Disease free means achieving remission and remission means having no signs of cancer for a period of time although it may be still in your body. Progression-free means the individual still has cancer but it is not getting worse. It can include those who have had some success with treatment, but still have obvious cancer requiring aggressive treatment.
The bottom line is this - you can't make good decisions on a consumer level, as a cancer patient or as an advocate when the terminology obscures the information you need to know.
3) We should focus in on the real target.
There's something really cool about watching my sisters in a sea of pink solidarity, seeing the ribbon hang from the White House or participating in a Komen event in memory of my mother. I find meaning in that and I'm sure others do too. Mammograms may offer us some comfort through a sense of control and we may feel accomplished and empowered by raising awareness, but if we spend too much energy advocating and accepting an outdated screening method we're not really sure about, we're not only being lulled - we're being sidetracked away from the more important challenges in saving women's lives.
In the world of detection, we need something much better than what we've been given. We need to be able to identify more aggressive forms of cancer in its earliest stages. Most of all, in the world of tumors, we need to better identify and understand the bad boys on a molecular level; including the biology of stem cells, the contributing tumor environment as well as finding more effective chemoprevention strategies.
I'm not settling for less and if you believe in the pink, neither should you.
Comments