Tuesday, November 17, 2009

New Mammography Guidelines: What Do They Mean to Women with TNBC?

What's the message to women with triple-negative breast cancers in the current brouhaha over changes in mammography and self-exams from the US Preventive Services Task Force?

The recommendation that women begin mammograms every other year after age 50, rather than yearly after age 40, is terse and to-the-point, with one qualifier:
The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient's values regarding specific benefits and harms.
If we take that broad statement and narrow it, "patient context" would include issues such as the BRCA1 or BRCA2 gene and a family or personal history of breast cancer.

We know that the BRCA mutation is linked to triple negative, so women who have that in their family will still be encouraged—I hope—to have a mammogram as soon as they are found to carry the BRCA gene. And those with a family history will still—I hope—have yearly mammograms beginning ten years before the age at with their closest family member was diagnosed.

The fact is that triple negative affects women who are not covered by current guidelines--it disproportionately affects women under 40. And, while there is the BRCA link, women can be the first in their family to discover they have the gene and they can have triple negative without the gene—so they would not have been vigilant about mammograms. And, mammograms have been less effective in finding IBC—inflammatory breast cancer—which is linked to triple negative in some women.

Also, as I have noted in previous blogs, MRIs may be more effective for high risk women, but in conjunction with mammograms.

So mammography is already an imperfect tool for triple-negative.

I suspect that the guidelines will hit some bumps before—and if—they are adopted. Breastcancer.org strongly disagrees with the changes, noting, among other things, that they are based on older types of mammograms (film rather than digital) and false assumptions on what course to take after diagnosis. They also, I think, make an important, and poignant point about the "limited" success of mammograms:

Expressed as nameless, faceless numbers, the 3% decrease in breast cancer survival might seem like an acceptable trade-off when compared to the economic benefits of changing breast cancer screening policies. But breast cancer affects a very large number of women, so 3% of that number is not insignificant. The reality is that more women -- mothers, daughters, sisters, grandmothers, and aunts -- will die each year from breast cancer, which is neither reasonable nor acceptable.

The guidelines also recommend against teaching breast self exams. According to Dr. Susan Love, the effectiveness of these has never been supported by research. Women can find benign cysts and worry over them and get tested unnecessarily.

But mammograms can also find breast cancer!

This is far from scientific, but I discovered my lump in the shower and my gynecologist also felt it and a mammogram discovered it. Yes, this is a universe of one, but the cancer was aggressive, so I was blessed that it was found early.

So, what are we supposed to do? Talk to your doctor and let your concerns be known. Be vocal and speak out through whatever forum you can find—letters to your senators and representatives and to your local paper. Connect with advocacy groups.Link
Most important, take care of your own health. Be aware of changes in your breasts—not just lumps, but any hardening, or variations in shape or feel. And, if you notice changes, be vigilant about getting tested. The fact is, under current guidelines, this was already a problem. So the reality remains that we are the ones most vested in our own health, and it is up to us to continue the good fight to get the care we need.

And, if you are at high risk, continue to get mammograms, but advocate for coupling them with MRIs. As I read it, the recommendations do not change that. If anything, I see the recommendations saying that highly aggressive cancers such as triple negative should get more—not less—attention.

It's always something.

1 comment:

deborah d. lattimore said...

It is completely mind-boggling, isn't it?? At first I thought it was an Onion parody. But, no, it's our government at work! Quelle surprise. I think the worst is that women who are afraid of mammograms or self-exams are now going to feel justified in avoiding them. At what cost?? We know the cost. Cancers undetected until it's too late. Way to go, panel!! And way to go, Susan Love, for supporting cancer! Jesus.