I resigned from Dr. Susan Love's Army of Women and sent a quick reason why...I have copied my short note and her novel of a response. I am not pleased with her answer.
My note:
I just wanted to let you know why I'm leaving the AOW. I was diagnosed at 34, stage IV because I was "too young." I felt that Dr. Love would be an advocate for all women with breast cancer, but that obviously isn't the truth. I feel like I've been thrown under the bus.
The Response:
Hi Amy,
I have read and listened to all of the calls and emails that have come into the Foundation and the Army of Women since I first appeared on TV talking about the new United States Preventive Services Task Force guidelines. It’s very distressing to me that many of you think that I’ve abandoned you and your concerns.
I have spent my entire career working in the breast cancer field. I want to find an end to this insidious disease. If I thought that these guidelines would harm women, I’d be the first person to speak out.
These guidelines are just that—guidelines. The guidelines aren’t saying that women between 40-50 should never have a mammogram. Women under 50 who are high risk should have a more intensive screening program that includes mammography. Women younger or older than 50 who see or feel a change in their breast should have a mammogram or ultrasound so that the problem can be diagnosed.
What they are saying is that a careful review of the scientific evidence shows that in younger women of average risk the risks outweigh the benefits of routine screening. Understandably, this is a shocking statement to hear, as it completely contradicts the “women should get an annual mammogram starting at age 40” recommendation that we’ve been hearing for the past decade.
What many people don’t know is that this recommendation to extend screening to women under 50 was fraught with controversy. The decision was not based on evidence; it was based on political will. Virginia Ernster wrote an excellent article about this in the American Journal of Public Health in 1997(http://ajph.aphapublications.org/cgi/reprint/87/7/1103.pdf).
Since then, we’ve become even more focused on the need for health care that is evidence-based. This is not just because of the cost factor. (The evidence may show that a more expensive drug or procedure is better, and that’s what we will need to then follow.) It’s because studies have shown us that treatments or tests we thought would be more effective were not. That’s why research is so important.
The problem with mammography in women under 50 is that it doesn’t work very well. Breast tissue is dense in young women and appears white on a mammogram. Cancer also appears white on a mammogram. This means that trying to find cancer on a young woman’s mammogram it is like looking for a polar bear in the snow. As a result, mammography misses many cancers in young women. And not only does it miss many cancers– giving a false sense of security–it also finds many things that are NOT cancer but need to be checked out through biopsies or other tests. In addition, the risk of the radiation is higher in younger women and cumulative so that the additional cancers caused by the radiation have to be weighed against the ones found by the test. It is not as simple as we would like to believe.
The guidelines do not say women can never have mammography under 50 or even over 75, another change that seems to have been overlooked. What it says is that women need to stop and weigh their own risks and beliefs and talk to their doctor and make a conscious decision about the way they personally want to go.
Additionally the guidelines do not say “never do breast self exam or touch your breasts again.” The data shows that formal four-position 20-minutes breast self exam is no better than the usual poking around we all do. The guidelines continue to suggest that women be aware of their breasts; they just do not recommend that physicians spend time training women in formal BSE. Most cancers in women under 50 are still found by the woman herself and not screening mammograms.
Finally, another point that has been missed by the media is the recommendation that mammography be done every other year in women 50-75. This too is based on data. The magic of 50 is menopause. As a woman’s hormones wane her breast tissue becomes less dense and the mammograms become easier to read, shifting the risk benefit balance.
The real issue is not whether mammography can find cancers but whether it can find them at a point that will make a difference in the outcome. The problem is that it is really the ability to find all cancers early that is being questioned. We now know that there are at least five different kinds of breast cancer and that some are so slow growing that it doesn’t matter when you find them, they would never kill you. Others are so aggressive that they will have spread before you can see them on a mammogram. It is only some of the kinds where you can make a difference with screening and it is mostly in women over 50.
What I hope these guidelines will do is push doctors to have a conversation with their patients about the risks and benefits of mammography so that women can make a decision that is right for them. If, knowing the risks, you want to have a mammogram, that should be your choice. But you should also know that mammograms are not all that good at detecting breast cancer in women under 50, so that you can be alert for any changes you see in your breasts. If you are high risk, you and your doctor should develop the appropriate screening program for you. Depending on your age, and your breast density, this might also include MRI. And no matter how old you are, you should see your doctor if you see or feel any changes in your breast.
I had nothing to do with formulating these guidelines but if you look back at what I have written over the years, it is consistent with what I am saying today: mammography is not a good tool for finding breast cancer in younger women and we need to put our efforts to finding something better. At the Dr. Susan Love Research Foundation, we continue to both fund and do research to find something that will work better than mammography, especially in young women at risk of getting breast cancer. The Love/Avon Army o f Women is one of the Foundation’s biggest initiatives, and we continue to reach out to the scientific community to let them know that the Army of Women is here and ready to help them recruit for studies looking at the cause and prevention of breast cancer.
Also, to be clear, I have not been influenced or received any donations from any insurance companies, nor have I been bought off by our Federal government, nor do I think that these guidelines are part of a government conspiracy. These guidelines come from a respected independent group that issues similar reports on a regular basis. Their last set of recommendations was in 2002. These recommendations are based on an extensive review of the data and took years to develop. It is just coincidental that they came out during the health care reform debate.
I hear your anger. I’m angry too. But not for the same reason. I’m angry because we’ve oversold the benefits of mammography to the extent that there is no longer room to look objectively at the evidence. I am angry that we still don’t know what causes breast cancer and how to prevent it. I started the Army of Women to channel that anger into positive action. I ask that you also channel your anger and frustration into helping us keep breast cancer from going on to another generation! We can do it. We can go beyond finding cancers that are already there to ending this disease all together. But we can’t let ourselves be distracted from the goal. We can agree to disagree about mammography screening guidelines, but we cannot let up the pressure and efforts to stop breast cancer once and for all!
Thank you
Army of Women
www.armyofwomen.org
3 years ago
