A couple weeks ago, I went in for another trip to another doctor. This visit was routine –the “review of systems” recommended at certain age milestones.
I hadn’t seen my primary care doc since the day she gave me the breast cancer diagnosis in June of 2009. Except for a few ongoing aches (the jaw, the elbow), I seem to be in pretty good shape. I got tetanus and whooping cough boosters, gave up two vials of blood for tests (sedimentation rate, thyroid hormone), and was sailing merrily out the door when I realized I’d forgotten to ask when I’m due for the next mammogram. My last one was in July, 8 months ago, but some guidelines recommend every 6 months for a couple of years after surgery.
So back I went to the desk clerk, asking her to query the doc.
“I don’t know whether we’re bothering with the mammogram anymore,” I said, “since they turned out to be pretty useless for me.” Before I’d even had a chance to finish my comment, the desk clerk rolled her eyes and nodded.
“Useless, that’s right,” she said definitively.
Obviously, she had no more faith in them than I do. I replied, “Yeah, I just wish the media would get that message across to the public, instead of the myth that mammograms will save you.”
She nodded again and said, “Yeah, that would be great.”
That message should be even louder with the report last week that mammograms are even more useless for those of us who’ve had breast cancer.
Also a few weeks ago, in my e-mail, came a link to an article about a woman in Chicago who returned to work after her treatment for triple negative breast cancer. Appearing in the article is a comment I’ve seen too often now — that this form of cancer is “aggressive” and outcomes are often “poor.” These comments have been repeated almost as if they were scripture.
As with information about any given disease, the truth of the matter is in how you slice the data. Clearly, the woman in Chicago is doing well, as am I. Of course our present circumstances are no guarantee of continued good health, but they do work to dispel the idea that triple negative disease is always deadly. A booklet published by the Triple Negative Breast Cancer Foundation, Guide to Understanding Triple-Negative Breast Cancer,clarifies a number of the misunderstandings about this particular form of breast cancer:
- About 10 to 20 percent of breast cancers are triple-negative.
- Triple-negative breast cancers do not respond to “targeted therapy” such as Herceptin and Tamoxifen. (HER-2 negative tumors were actually considered the most dangerous type of breast cancer until Herceptin came along.)
- Although BRCA1 mutations increase the risk of developing triple-negative disease, not all breast cancers from BRCA mutations are triple-negative. The BRCA2 mutation is actually more likely to appear in tumors that are estrogen receptor-positive.
- Even if you have no family history of breast cancer, you could in fact be the first person in your family known to develop breast cancer because of a BRCA mutation.
- Pre-menopausal women and women in black and Latina groups have higher rates of triple negative cancer than other groups of women.
- Chemotherapy works better against triple-negative cancers than it does against hormone positive breast cancers.
- Although triple-negative breast cancer can be aggressive, it does not always metastasize. The risk of recurrence is strongest in the first 3 years after diagnosis (some studies say 5 years, some as many as 8-10 years). Past this time, the risk of recurrence actually falls below that of other types of breast cancer.
And most importantly, most women with triple-negative breast cancer never have a recurrence or a new cancer.
So, like the myth about mammograms, the message about triple negative breast cancer needs to change.