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Mammogram Callback Follow-up, A Useful Conversation

After getting a mammogram callback about a dense area in my right breast I was urged by my doctor to get more tests ASAP. I decided to wait a few months and retest to see whether anything had changed. I made an appointment with a different radiologist with a different hospital affiliation. When I made the appointment I explained that I wanted one follow-up test – a mammogram or an ultrasound – and not a battery of mammograms like the ones a few years back.

This morning I got a call from the doctor at the breast center where I had made the appointment. On the one hand, any doctor who makes a personal call to a patient (especially a patient she has never met) immediately commands my attention and respect. On the other hand, this doctor had a definite agenda and she was prepared to push it very hard. She was also the fastest talker I have encountered in a long time (including on TV shows) so I had to listen intently to take in what she was saying.

I was impressed with the first point she made: that she and the radiologist hadn’t just read the reports from previous radiologists but had gone back and looked at my films for themselves. She said they saw calcifications associated with an area of density and that the dense area had increased in size from one film to the next. This was new information to me. As far as I had known up to that point, the dense area had just appeared this year. She said that in order to learn more about the dense area they would have to look at the appearance of the calcifications and this would require a “workup,” a series of mammograms. An ultrasound would not provide the necessary information, she said. If the results of the mammograms were worrisome, a biopsy might be necessary as well.

She said that because I was not young and not on hormone therapy a dense area was a cause for concern. I said, “But I am on estrogen-only therapy.” She said hormone therapy can contribute to dense areas in the breasts, especially as women get older. (I later read that estrogen therapy is associated with a higher incidence of false positives in mammograms.) I started to explain that I take estrogen because of research indicating that it can protect against heart disease which is common in my family. I started to say “and certain cancers, including breast cancer” but she interrupted me. I said, “Please let me finish.”

She stopped talking and let me finish. Then she said that reduced heart disease among estrogen users may be because estrogen users probably have better overall health care and that reduces heart disease rather than the estrogen. (This sounded to me like rationalizing speculation by the breast cancer establishment rather than proven scientific fact but I didn’t say so.) She said that a woman’s chances of getting breast cancer increase as she gets older. I said that we’re still talking about less than 5 percent. I also said that one of the reasons why I feel cautious about mammography is that it doesn’t take into account the general health of the person and whether they have diabetes and other health problems although these factors can be correlated with breast cancer. She said that she has to look at the situation from the point of view of breast cancer. I said, “Of course.”

She said she appreciated it when patients were well informed. I said I appreciated her calling me personally. I’m not happy about this new plan but, based on the information I now have, it seems inevitable. I can still veto the biopsy if and when the time comes. I told her I was cautiously optimistic about my situation and she said, “Good.” This conversation cleared up a couple of important misunderstandings and strikes me as a great example of why direct doctor/patient communication (rather than exclusive reliance on tests) is so essential. I'm sure that doctors don't necessarily enjoy talking with opinionated patients like me. On the other hand, they probably understand that patients who get their questions answered up front are less likely to sue if something goes wrong because responsibility for decisions about care was shared.

Two questions remain in my mind. Why do radiologists believe that they can accurately interpret films without knowing anything about the patient’s medical history, including relevant facts like my estrogen use? Is the doctor pushing her agenda so hard because she is pressed for time or because she herself has some doubts about it, or both?

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.

Three Important Reasons to Keep Hard Copies of Your Medical Records

This year, my annual physical was scheduled for late July. I always get the regular blood tests done a few weeks ahead so my doctor and I can discuss them face to face and renew any needed prescription. This year, though, my medication for hypothyroidism was about to run out. Once the blood test results were available, I asked the doctor’s office to renew the prescription immediately and not wait for the appointment. It didn’t get done.

1. When it comes to your medical records, the only constant is you, not your doctor or your doctor’s office.

The reason my prescription wasn’t immediately renewed was that my doctor did not have my medical records. The reason she didn’t have my medical records was that she had moved, from an office affiliated with one of our local hospitals to an office affiliated with the other.

2. Electronic medical records systems are not compatible with each other.

At some point after I had made the appointment for my physical, my records were faxed from one office to the other. Since the systems used at the two offices are not compatible, information sent by the old office will have to be entered by hand into the new office’s computer. This may take many weeks or months and will provide opportunities for data entry errors to be made. In the meantime…

3. Computer systems in medical offices are constantly being changed and upgraded.

Each time this happens there is more opportunity for error and for records to be lost entirely. Also, there seems to be no requirement that any new system be more universally compatible than the previous one.

On the day of my appointment I arrived at my doctor’s office with a fat folder containing the medical records I have been keeping over the past ten or fifteen years. (Even when she finally does get my electronic medical records my doctor will not have a history going back that far.) I had also made a separate list of my thyroid test results over the past two years so she would know immediately what dosage to prescribe. While I was there, she made photocopies of other test results that I had and she didn’t.

I was still mulling all of this over a few days later when I got a letter from a hospital affiliated with an Ivy League university on the east coast. When my mother died in 1986 of the effects of Alzheimer’s disease, some of her brain tissue was donated to this facility for research. “Regrettably,” the hospital said, they had lost track of backup data tapes containing information about my mother. And, by the way, the tapes were unencrypted.

Update: After writing this, I have been thinking about how enormously destructive the transition to electronic records has been. For millions of people, years of health-related data have been misplaced, lost or intentionally discarded. Why did anyone believe we could do without paper records without first having a reliable, universally compatible electronic system in place?

Caution, Patients, Large Studies May Be Hazardous to Your Health (and Incur Unnecessary Costs for the Health Care System)

When it comes to providing clear explanations of complex medical and health-related issues, there is no one better than Aaron Carroll. As a person who is regularly looking for answers in these areas, I am a huge fan. I watch his videos on Healthcare Triage, read his articles in the New York Times, and follow him on Twitter. His excitement about food, ideas, travel, and the latest exploits of his kids are fun to read about. You probably sense that there is a “but” coming – and here it is: Aaron’s enthusiasm about large studies makes me uneasy.

Large studies inform us about what happened to a particular group of individuals under a specific set of circumstances. They can provide guidance for medical practitioners when they deal with individuals who appear to be similar to that group; they can give doctors an idea of what to look for. What can large studies tell doctors for certain about any given individual? Absolutely nothing.

Problems arise when the guidance provided by studies morphs into a hard-and-fast rule about what must always or never be done. In some cases conclusions from studies are over-generalized and made to apply to situations which are beyond the scope of the studies.

“Arthroscopic Surgery Isn’t Going to Fix Your Knee,” a recent HCT video, talks about a recent review and meta-analysis of studies on arthroscopic surgery for degenerative knee. Both the title and the video itself make it sound as though arthroscopic surgery is always a waste of time and money. Yet the studies were really about attempts to repair degenerative knees. They weren’t intended to address the issue of repairing knee injuries.

When patients fail to conform the rules derived from large studies, they may have great difficulty securing proper medical treatment. Here is what happened to a friend of mine, a man in his mid-seventies, a natural athlete who was then playing racquetball a couple of times a week. One afternoon he tripped as he was going up some stairs. In instant he went from normal to hardly being able to walk.

After an x-ray at the hospital, he went to a local orthopedics practice where the first doctor said, “You have a torn meniscus. It can be repaired with arthroscopic surgery – we do it all the time.” That sounded fine to my friend but when he was passed along to a surgeon in the same office he got a different pitch. The surgeon said, “You have advanced arthritis and surgery would not do any good.” He then gave my friend a cortisone shot, which had no effect on his pain or disability and told him that he would probably require a knee replacement in the foreseeable future.

The story about advanced arthritis didn’t sound quite right to my friend. Before the injury, he had been able to squat down and remain there for minutes at a time (the pose of cowboys in front of a campfire). He sought out a second orthopedist. This doctor, a woman, said, “We don’t normally do knee surgeries on people in their seventies but I think you are the exception.” Several weeks later, after performing the surgery, she said, “This knee was like a Ping-Pong ball. I’ve seen people in their forties who didn’t have knees as good as this.” This was an injury, not advanced arthritis. The first surgeon had lied because he didn’t want to operate on a man in his seventies. My friend went back to playing racquetball.

Doctors today have impossible schedules. They see each patient for fifteen minutes, if that. Under these circumstances, over-generalizations and rules based on large studies can become a tempting substitute for close observation and careful analysis of an individual situation. The likely consequences are improper care for the patient and unnecessary expense for the health care system. In thinking about my friend’s experience I have sometimes wondered how many older people with injured, but otherwise healthy, knees have been steered into having knee replacements when all they needed was a simple arthroscopic surgery.

Patient Stereotyping at the Optometry Clinic

A friend of mine, now in his eighties, had been unhappy with his distance vision for several years. Each year or so he had his eyes tested at an optometry clinic run by a nearby university where there was a school of optometry. On these occasions he would ask whether he should consider cataract surgery. Each time he was told that it would probably do no good because his distance vision was not that bad. This year he learned that he had drusen, yellow deposits under the retina. These marks, he was told, might be early signs macular degeneration, which might be contributing to his vision loss and would not be helped by cataract surgery.

 

At the optometry clinic, my friend’s eyes were examined by students whose work was then checked by a faculty member. Some of these students were observing certain eye conditions on a live patient for the first time; they had only previously seen them in textbooks or online. In addition, typical patients at the clinic were other students or faculty in their thirties through early sixties. Relatively few older people were seen there.

My friend decided to get a second opinion. He visited an optometry practice that uses state-of-the-art tests and equipment to examine and treat conditions affecting vision. There, the typical patient is in their sixties or older and the doctors on staff have had years of experience treating such patients. The doctor who saw my friend told him that he was a good candidate for cataract surgery; that there would be a significant improvement in his distance vision. After looking at the drusen, he told my friend that there are different types; the kind my friend had might never cause any vision problems at all. 

My friend just got cataract surgery and, after less than a week, already has better distance vision than he had had with his glasses.

An Interlude in Padua

Prato della Valle is a huge open space at the edge of the old part of Padua. Once the site of a Roman theater and of Renaissance jousting competitions, it is the largest piazza in Italy (over 22 acres). We were there to see the Basilica di Santa Giustina, which commemorates Saint Justina, an early Christian martyr and the patron saint of the city.

Inside the church, marble floor tiles are laid in an illusionistic pattern, a surprisingly modern touch. The church is supported by massive pillars that rise to graceful arches overhead. In the late afternoon silver-grey light filtered down from windows in the domes high above. A pigeon had gotten inside and cooed somewhere out of sight.

As we left, a monk came out to lock the doors. He had an easy smile with one tooth angled inward and asked us where we were from. We told him and asked him if he was Italian (in Italy, priests and nuns come from all over the world). “Italianissimo!” he answered proudly. Then his cell phone rang and he had to go. We walked across to a restaurant where we could watch the sun go down over the piazza.

There are moments when the diverse strands of my experience seem to be woven together into a coherent whole. This was one of those moments.