Baby bear’s chair: tolerance for ambiguity in finding the amount of cancer follow-up care that’s “just right”

April 13th, 2012 § 10 comments

In the past few weeks a flurry of news articles discussed the topic of overtreatment in medicine. From both sides, suddenly, we are hearing physicians (“Doctor Panels Recommend Fewer Tests for Patients”) and patients (“Do Patients Want More Care or Less?”) proposing what seem as a controversial idea: less care may be, and often is, better.

My thoughts on this topic stem from a variety of influences: my father spent his career as a cardiothoracic surgeon and now is editor of the Journal of Lancaster General Hospital. My mother spent her career as a psychologist. I have a graduate degree in sociology. Five years ago I was diagnosed with stage II breast cancer. I have a son with congenital defects in his spine and hands.

I list some of these influences because they are important sociological variables and have surely affected the way that I think about this subject. It is often the case that anecdotal evidence supplants cumulative scientific data when people make decisions; that is, if you or someone you know has had a certain experience, that information will weigh more heavily into your thought process than knowing what “the statistics show.”

When I underwent a double mastectomy and completed chemotherapy for my breast cancer, my two oncologists and I sat down in separate meetings to discuss the always stressful: “What now?” I had hormone-receptor positive cancer (breast cancer that is “fueled” by estrogen and/or progesterone)  so I was able to take adjuvant therapy.1 I opted to have my ovaries removed even though I am BRCA-1 and 2 negative.

But what about screenings? After my double mastectomy they told me I wouldn’t get mammograms anymore. I would, however, do “tumor marker tests” that measure levels of antibodies in the blood. They are not very reliable, and therefore are not good screening devices. This is why they are not yet used for the general public and some oncologists don’t even use them. The tumor marker tests can sometimes show if cancer has returned before other symptoms show. Because the tumor marker tests are done via routine bloodwork, the tradeoff seems acceptable to us. The tests are relatively benign. When it comes to other testing, however, the bigger discussion started with my oncologists.

What about PET scans?2 Chest x-rays?

Discussions about screenings and testing are negotiations of sorts. As the new research and guidelines indicate, doctors and patients are often at odds on how much monitoring is “just right.” I propose that one of the most important variables in this discussion has been overlooked: the psychological ability of the patient to tolerate ambiguity. That is, I believe there are some people who can live with uncertainty better than others, and the amount of uncertainty a patient can accept in his/her treatment should be an important consideration in current discussions about overtreatment of patients.

The decision to have a prophylactic mastectomy on my right side, for example, was in part made because I didn’t want to worry about getting a new primary breast cancer on my other side.3 Some consider this decision controversial and I’ve spoken about my thought process here in USA Today with a followup to critics here.

Screenings are not always benign. While blood tests may be considered simple, they still cost money. Mammograms, x-rays, CT scans, and PET scans all expose the patient to radiation in varying amounts. Many patients are not aware of the relative radiation exposure that screening/diagnostic tests pose. For example, a chest CT provides nearly 200 times the amount of radiation as a two-view x-ray of the chest. A helical abdominal/pelvic CT provides the same amount of radiation as twenty 4-view mammograms (full article here).

My oncologists were quite clear five years ago: there would be no PET scans for me. I worried: after all, shouldn’t I be monitoring my body for any residual cancer? In my particular case, they were adamant: no (of course there are many cases where this risk-to-benefit ratio is different and PET scans are necessary. There are many factors used to make this decision). These decisions are not solely about radiation exposure; they also take into account how likely tests are to yield false positive results on a PET scan.4 There are many reasons why areas may “light up” in a scan, arousing suspicion. If any areas do light up, this could provide more anxiety and opportunity for additional testing, most often unnecessarily. Not every suspicious area can be biopsied, and you can’t biopsy every time something lights up. Instead, watchful waiting with a keen eye to symptoms of potential recurrence is what we’ve determined is best. I do get a chest x-ray each year. I do tumor marker tests. I follow up with my physicans if there is pain that doesn’t resolve (which can sometimes be a symptom of a cancer recurrence).

I’ve taken a different approach in the past few years with tests not only for myself but also for my children. I always ask “Is this really necessary? Is it important? Does it need to be done this often?” This is not to say that the test won’t happen. I’m not arguing with the providers. But discussing these topics is important. Frequently, tests or screenings are suggested with a time range and now, with with some tests, if screenings have been clear in the past, longer intervals may be used in the future (Pap smears, dental x-rays, etc.). It is worth reading about some of these options and talking to your doctor/dentist about them.

Research shows that antibiotics are not needed (and no more effective than placebo) for many common illnesses like bronchitis, sinus infections, and ear infections. Yet, patients often clamor for them.

As I talked about in the USA Today interview/response piece, there are many factors which come into play when deciding what surgery one wants to have and what level of follow-up care is right for patients. This determination is one that a doctor and patient must come to together. Each must rely on the other to help navigate the murky waters of staying healthy. That said, our healthcare system does not often allow for such conversations to occur and does not reward doctors for the time needed to have in-depth conversations with their patients. Further, physicians are still concerned with liability if they opt to reduce testing on a patient and they miss a problem.

One variable that I think will help doctors and patients come to a more mutually satisfying relationship is a determination of the patient’s tolerance for uncertainty. With this information, physicians can identify more pointedly which levels of acute treatment and long-term follow up care are both psychologically acceptable to the patient and medically reasonable.

  1. adjuvant therapy referes to drugs taken after chemotherapy to block the effect of the hormones… for pre-menopausal women this would be a drug like Tamoxifen, for post-menopausal women an aromatase inhibitor like Arimidex []
  2. Positron Emission Technology scans require a radioactive dye to be introduced into the body via IV that is then absorbed and monitored. It can be used for a variety of purposes but is freuquently used to try to identify tumors in the body []
  3. even though I was told the statistical likelihood was the same as that of getting breast cancer in the first place. I decided that those odds hadn’t been in my favor once before. Part of my decision was made for aesthetic reasons of symmetrical reconstruction, but part was made to avoid mammograms and biopsies in the future. In the end, pathologists found dysplastic cells in my “healthy” breast so maybe being proactive was a better decision than I even knew at the time []
  4. a false positive result is one which indicates there is a problem when in fact, one does not exist []

§ 10 Responses to Baby bear’s chair: tolerance for ambiguity in finding the amount of cancer follow-up care that’s “just right”"

  • Lisa,
    This is a balanced and well-thought out post. The recent flurry in the news you speak of only adds to the confusion so many people are feeling. I become a little wary whenever specific guidelines are put out because generalizations can be potentially dangerous. In this case, I think I agree with the “choosing wisely” campaign that is going on. Like you, I worry about recurrence and have had the “to test or not to test” discussions with my oncologist. It feels like walking a balance beam sometimes doesn’t it? Anyway, important post about an important discussion going on today. Thanks for writing it.

  • Sara (@paganmama) says:

    This is a very interesting piece. An individual’s decision–and ability to deal with uncertainty–will vary, too, depending on s/he feels is at stake. I know that my feelings about what I would pursue for myself have changed since I had my son.

    My sister, who was diagnosed stage II at age 28 (in 2002) and had a regional (clavicular) recurrence five years later, after which she had her ovaries removed, just opted for a prophylactic mastectomy of her other breast in December. My understanding is that, statistically, the chance of a new cancer occurring in her remaining breast rose 1% every year. When that risk got to 10% (10 years after initial diagnosis), she decided it was time. (Her son is five years old.)

    In February, just before I turned 42, I was diagnosed with what was thought to be DCIS. Because of my family history and age, I opted for mastectomy of the one breast rather than lumpectomy. The pathology shows stage II invasive lobular carcinoma, undetected in any testing prior to the mastectomy. Yikes. For now I will monitor closely (I’m still recovering from surgery, and it’s not yet certain, though it’s likely, that I’ll need chemo). But is removal of my other breast in my future? Very likely.

    I appreciated your work here before I got my diagnosis, and even more now. Thank you.

  • Chemobabe says:

    My oncologist does not give me scans at my follow ups. Like you, I was young when my breast cancer was diagnosed and I opted for a double mastectomy. Since my cancer was stage 3, she told me it will only come back metastatic. Scans would not catch it that much earlier than a blood test, and I would not gain much in terms of ultimate outcome. If it doesnt come back, then I would have needlessly exposed myself to significant doses of radiation. The new guidelines seem to make sense to me because of this.

  • 3lainess says:

    I’m very interested in how we handle ambiguity from an intellectual, esoteric view. But, closer to home, I think that breast cancer has helped me tolerate more ambiguity than I thought possible. I was stage 2, post menopausal. I had a lumpectomy that really didn’t change my breast size, and with clean margins, negative lymph nodes, I am comfortable with my choice. Before I started chemo, I had a bone scan, chest x-ray and abdominal scan (that’s standard procedure for where I was treated).

    I am followed by my oncologist and my gyn (in Switzerland, your gyn does the surgery) every three months – blood tests, physical exam, ultrasound, discussion. And I feel comfortable with my decision.

    When I ended chemo and rads I was wigged out, and my oncologist offered me a PET scan, but I said, nah, it would make me even more anxious. Over time, I calmed down. I don’t know what the future holds, but I figure that I’m followed – though not with excessive testing and scanning, but with human contact – asking me the right questions. And I feel that if I ever have anything strange, I can call and have it checked out….that helps me from living in a constant state of arousal, worrying about every twinge and pain.

  • Pam says:

    Excellent post.

    I think you’re right; doctors would do well to take into account the tolerance for ambiguity in each patient when coming up with plans for treatment and follow-up.

    There has been much discussion about how close we are to individualized treatment in regard to the genetic makeup of the patient and the cancer, but individualized treatment of the patient as a person is very helpful, and is something doctors can do right now.

  • Anonymous says:

    Loved the blog. Would not be hurt if you explained some of the medical terminology sometimes.

    Hormone receptor positive cancer and BRCA? I know that’s what google is for, but when I read your blog, I am so very focused on what I am reading.

    Probably 50% of the people know everything you’re referring to and 50% don’t. Love your writing, but dumbing me it down medically to my level would, selfishly, help me.

  • JoAnn says:

    I do not live well with ambiguity. Maybe I could have a more laid-back approach if I did not have such an aggressive cancer (UPSC) that is so likely to recur. And a cancer on which virtually NO research or trials are being done. Not to belittle what you and many of your commenters have, but I often say that I wish I had breast cancer. That is pretty sad/bad. But it is true. At least breast cancer gets attention, research, and trials.

    I sometimes read an American Cancer Society forum where women with UPSC (Uterine Papillary Serous Carcinoma), a rare form of endometrial cancer, post. Many of their recurrences were missed on a CT scan yet our insurance companies and Medicare rule us ineligible for PET scans. Women with ovarian cancer can, however, get PET scans, even though UPSC is treated as if it were ovarian cancer and is, in fact, more lethal than ovarian. GO FIGURE.

    I do not take things like this lying down, and decided to do some research. I found an organization called NOPR, the National Oncologic PET Registry

    This link explains what it is:

    One call to this group was all it took to get the necessary information to pass on to my doctors.

    In essence, NOPR is a research project in which people on Medicare can register in order to get free PET scans! And it is being done in response to CMS/Medicare’s proposal to expand coverage of this scan. Yet neither of my oncologists, my oncology nurses, or my radiation oncologist ever mentioned this to me!

    The tumor marker CA125 is not valid for me. I am supposed to monitor myself and let the doctors know if I feel that anything is wrong!!!! That is an awful lot of pressure on a patient. Every ache and pain is a possible return of cancer. So it is with great relief that I will get a PET scan in July because problems do show up earlier with this kind of scan.


  • colleen lindsay says:

    Lisa –

    I’m with you: I’m pretty good at dealing with uncertainly and I try not to have excessive tests. I know someone who is a major hypochondriac; she routinely insists on tests that expose her to massive amounts of radiation for no good reason. She gets a chest cold and insists on a chest x-ray. She has a headache and insists on a CT scan, It’s nuts. I even opt for body pat downs at airports because I don’t even want that small amount of exposure (and because my radiation oncologist told me it was a good idea to stay out of any kind of airport scanner). I don’t mind the pat downs; nobody has ever been inappropriate.

  • jibjabst says:






Leave a Reply

Your email address will not be published. Required fields are marked *

What's this?

You are currently reading Baby bear’s chair: tolerance for ambiguity in finding the amount of cancer follow-up care that’s “just right” at Lisa Bonchek Adams.