When I Say No To This Year’s Mammogram Callback, Who’s On My Team?

Peter Ubel’s article in Forbes, “Has Mammography Created an Epidemic of Pseudo-Survivorship?” makes for painful reading. By recounting the ordeals of a patient he calls Mary Vogt, he illustrates how the many women who have been aggressively treated for DCIS (ductal cancer in situ), aka cancer 0, have been harmed by this therapy. In my opinion, another casualty in situations like this may be the relationship of trust between patient and doctor, a relationship that is at the heart of the healing process.

Several years back I wrote a post called “Mammograms and the Cost Conundrum.” 

There I recounted how radiologist who read my mammogram decided that the calcifications that had been there all along had changed in appearance and might now be dangerous. He recommended a biopsy (see Peter Ubel’s description). I got a second opinion, which was that nothing had changed. The calcification episode was actually the third mammogram callback I’ve gotten, each time with a different, vague-sounding story. Invariably, these come about when a new radiologist looks at my pictures.

After skipping last year, I went for a mammogram last week. A few days later the word came back that the radiologist (a new one) had seen a one-centimeter “dense area” on my otherwise not-dense right breast and wanted me to come back for an unspecified number of mammograms and perhaps an ultrasound. I said “No.”

The radiologist, an independent contractor located somewhere out of state, is telling me that he can’t see this area clearly enough. He probably would like to know exactly what it is. For me, the only essential question is “Is this invasive breast cancer?” I want to wait for three or four months and have another single test to see whether anything has changed. If there’s change, at that point we can bring in the heavy artillery. The offending area may be any of a number of benign conditions, such as a blocked duct, or it may be nothing at all. It could also be DCIS. In any of those cases, I want to leave things strictly alone. Additional mammograms might provide certainty but they might also lead to still more testing, radiation exposure, and expense for the system as a whole. Also, while mammograms are generally no big deal for me, the eight or so done during the calcifications episode are still vivid in my mind.

My primary care provider is clearly unhappy about this. She has already urged me once to get the recommended follow-up and, after I told her nurse what I had decided, wanted me to come in for “clarification” of the matter. I will try to avoid doing this because I believe it will only lead to more arguing and unnecessary stress for both of us.

Medical practice is supposed to be based on science. So what are the facts here? Any woman in her 60s has less than a 4% chance of developing invasive breast cancer. Many women in their 60s are overweight, have hereditary or environmental risk factors, or all of the above. I have none of those. My insurance company just refunded about half of my Medicare Part B premiums because I’m such a bargain. People in my family die of strokes and heart attacks, not cancer, and breast cancer is pretty much unheard of. (The breast cancer types like to talk about all the women with no family history who get cancer but those figures are suspect because they probably include a lot of DCIS, which is not a cancer.)

A couple of unusual circumstances. My mother took stilbestrol when she was pregnant with me but the women who have apparently gotten cancer from that cause were all decades younger than I am; I would be medically unique if it happened to me at 69. I've never had children, which raises my risk 40%, so let's say my risk of invasive cancer is as high as 5%. On the other hand, I take estrogen, which, when started early (age 32) may protect against breast cancer, unlike the mixed type of hormone therapy. For all of these reasons, I think breast cancer for me is a long shot. Would you bet on a horse that had a 5% chance of winning? Not impossible, but very unlikely.

In the current state of medical practice the burden of proof is on the woman with an “abnormal” mammogram to demonstrate that she does not have a dangerous condition. The burden is transferred to her in the form of radiation and to the system as a whole in the form of additional cost. The ostensible reason is to save the patient from dying; an important collateral reason is to protect doctors from liability – they’ve got to be able to show that they did everything they could. My doctor is determined to get me to do this; I am determined not to. I told her nurse that I would be glad to sign a release saying that she had recommended this option and I had refused it. On the other hand, if my doctor is simply unwilling to accept my decision, I will have to find a new doctor. I would be sorry to do this because we have had a pretty good relationship over the past four years.

My doctor is in a difficult situation. The large outfit she works for is undoubtedly putting pressure on her to take this approach and she has a family to support. On the other hand, even after the many articles like Ubel’s that have shown the damage done by aggressively treating a non-illness, for this medical organization it is business as usual. I sympathize with my doctor but I will not agree to repeat this retesting process every three or four years for the rest of my life. Ultimately, I must make my own decisions about my health care and take responsibility for them.