A New Awareness
I find it somewhat ironic that my birthday month is also Breast Cancer Awareness month. I have mentioned before that I am pretty sure America is well aware of breast cancer now. But since being diagnosed a second time, this time with metastatic, incurable breast cancer, I question the slogan "Early detection saves lives." Because it really doesn't.
I am part of a metastatic cancer group on Facebook. It has 1,203 members today. Recently, a member surveyed us to find out what stage each of us was when we were initially diagnosed with breast cancer. Another member mentioned that she had done something similar last year with similar results, which were surprising: More women with metastatic breast cancer were initially diagnosed stage 2 than stage 3.
Everyone would have thought that the higher the stage at initial diagnosis, the higher the chance of recurrence. Of course this isn't a scientific study, but those are seriously lacking, because no one officially tracks this information. All statistics on breast cancer survival count from initial diagnosis and don't factor in recurrence at all. Here is what the Metastatic Breast Cancer Network says,
This is the kind of awareness I think we need now. Early detection doesn't mean you'll have one fight and then be done, like I thought for the past four years. It doesn't really mean anything. You can be diagnosed with stage 2 breast cancer and go on to get metastatic cancer, sometimes only months later, as 30% of the women in my metastatic breast cancer group can attest to. So instead of raising money for breast cancer "awareness," let's raise money for research that will find a way to keep breast cancer from metastasizing, or spreading throughout the body. Or for research that finds a way to get rid of cancer, even after it has metastasized. No one dies from early stage breast cancer; only metastatic breast cancer is fatal. And anyone can get it, early detection or not. This ribbon should be the new face for October.
I am part of a metastatic cancer group on Facebook. It has 1,203 members today. Recently, a member surveyed us to find out what stage each of us was when we were initially diagnosed with breast cancer. Another member mentioned that she had done something similar last year with similar results, which were surprising: More women with metastatic breast cancer were initially diagnosed stage 2 than stage 3.
Everyone would have thought that the higher the stage at initial diagnosis, the higher the chance of recurrence. Of course this isn't a scientific study, but those are seriously lacking, because no one officially tracks this information. All statistics on breast cancer survival count from initial diagnosis and don't factor in recurrence at all. Here is what the Metastatic Breast Cancer Network says,
It is thought that 30% of early stage "survivors" will develop metastatic disease. So what exactly is early detection doing for us? Not to mention that many many women are being diagnosed before they are even old enough for a mammogram. How will they "detect" their cancer early? I was diagnosed at 31, nine years before even the youngest recommendation for beginning annual mammograms. There is good research behind this recommendation - young breast tissue is difficult to see well on a mammogram, thus limiting its effectiveness - but insurances are loathe to pay for MRIs, which are the tests that can detect breast cancer in young women. Even as a known BRCA carrier and someone with a strong family history of young diagnosis, my sister has to fight with her insurance company every single year to get them to pay for her MRI. One year they even sent her account to a collection agency and she had to appeal up through the president of the health system to get it covered (this was not at UVA, by the way).The NCI/SEER (National Cancer Institute/Surveillance Epidemiology and End Results) databases record when a person is diagnosed with breast cancer and when a person dies. It does not record a metastatic recurrence for someone who had early stage breast cancer. Therefore the SEER databases collect only those with an initial Stage IV diagnosis, which represents only a small portion of metastatic breast cancer. Under the current system if everyone was reclassified as stage IV when their cancer metastasized, there would be no meaningful survival statistics because early stage cancers (I-III) would all have 100% survival and stage IV would have 0% survival.)If you were first diagnosed with an earlier stage cancer, you are not excluded from breast cancer statistics, but you are not counted as being metastatic.
This is the kind of awareness I think we need now. Early detection doesn't mean you'll have one fight and then be done, like I thought for the past four years. It doesn't really mean anything. You can be diagnosed with stage 2 breast cancer and go on to get metastatic cancer, sometimes only months later, as 30% of the women in my metastatic breast cancer group can attest to. So instead of raising money for breast cancer "awareness," let's raise money for research that will find a way to keep breast cancer from metastasizing, or spreading throughout the body. Or for research that finds a way to get rid of cancer, even after it has metastasized. No one dies from early stage breast cancer; only metastatic breast cancer is fatal. And anyone can get it, early detection or not. This ribbon should be the new face for October.
http://www.metavivor.org/
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