Patients Face Anxiety After Choosing Not to Treat Thyroid Cancer

Patients who choose not to have their thyroid cancer treated often have feelings of anxiety and isolation, and are at a risk of disengaging from the health care system because they might not feel supported.

In a qualitative study, 22 participants with thyroid cancer were interviewed to describe the experience of independently self-identifying as over-diagnosed and choosing not to intervene.

Twenty-two people were interviewed, 18 of whom had elected not to intervene on their thyroid finding and had been living with their decision for a mean of 39 months. Of these 18 patients, 12 reported experiencing severe anxiety regarding the progression of their cancer but had chosen to not intervene for reasons relating to understanding issues of precision in diagnostic testing, surgical risk, medication use, and low risk of death.

Twelve of the participants who chose not to intervene described the response from medical professions, family, and friends as being unsupportive and not reassuring. Fourteen of the participants stated that they would have liked to connect with others, but only three successfully did so.

In an interview with CURE, lead study author Louise Davies, M.D., an associate professor of surgery, The Dartmouth Institute for Health Policy and Clinical Practice, discussed the experience of patients with incidentally identified thyroid cancer who choose to not receive treatment.

Please provide an overview of this study.

We undertook this study to understand the patient experience of what it was like to decide for oneself that perhaps thyroid cancer that had been picked up incidentally was not something that they wanted to actively treat at that time. I had found through my own experiences when patients had contacted me that it seemed to be very challenging, so we wanted to write about it.

We had these interviews with 22 people who had decided to really think hard about whether they wanted to undertake treatment or not. Eighteen of them ultimately decided not to undertake their treatment. They found that it was a difficult path and it has been isolating for them. They didn’t get a lot of support from people around them or from the healthcare system. Several of them even stopped getting checked to see if the cancer had changed because it was quite anxiety provoking, it was somewhat expensive, and they didn’t seem to get a lot of support.

Nevertheless, only seven people out of the 18 wished they had never been told about their thyroid findings, which we found surprising. We just learned a lot about the patient experience of over-diagnosis right now during this time in history.

What was the rationale behind conducting this study?

I decided to conduct it because it had become apparent to me that patients were receiving very different kinds of messages from physicians when they asked questions about whether their cancer might have been picked up incidentally and perhaps, was not likely to advance. It seemed like we needed to hear their voices and to understand what it was like to be on that side of the equation.

What were the most significant findings?

To me, there were a few interesting findings that might not be immediately obvious. One thing that we found fascinating is that we as physicians think about cancer as if somebody has a positive test, that is when they have a cancer. However, for a patient if you do an ultrasound on them or you give them a needle biopsy result that says they might have a cancer, the lived experience of that is essentially the same as if you told them they definitely have a cancer. The fact that they don’t actually know whether they do or don’t makes them consider what they are going to do if this is real. We had people in our sample who didn’t have a definite cancer but their experience was exactly the same as the people who had a definite cancer. It’s important to us as physicians to remember that.

Another thing that was notable was the degree of suffering that was created by nonacceptance by physicians, by healthcare professionals, and by family and friends. People really described a lot of isolation. I think we need to be aware of that.

Are there any next steps with this research?

What the participants told us is that they would feel much better if they didn’t feel so alone. From here, a good next step that we hope to pursue is finding ways to help people connect to one another who have decided that they might like to consider monitoring incidentally identified small cancers that aren’t causing any symptoms.

Also, it is apparent to me this study was not about physicians but clearly physicians need support, as well. We will probably be investigating the physician experience of trying to both support those patients and to feel safe in monitoring people.

What other tumor types would benefit from similar research?

Prostate cancer observation has been going on a long time, that is part of why we no longer recommend screening for prostate cancer. I would say one of the interesting emerging areas is the issue of breast cancer and ductal carcinoma in situ. I will be very curious to see what happens in that space. But, those are the only ones that I know of offhand.

What are some of the main challenges that still exist in this space?

The big problem that we have is we still don’t know which of the thyroid cancers we’re finding are likely to cause death. There has been a lot of work done around molecular markers for papillary thyroid cancer and every few years a new marker comes out and we think maybe this one is going to tell us which one is likely to be aggressive. Many of the ones that we tested in the past, such as BRAF and others, have been helpful in telling you whether a needle biopsy likely contains a cancer but they haven’t turned out to be that helpful to tell us whether it is likely to recur and advance.

Is there anything else you would like to add?

I think it really has been a lesson for me in understanding the impact that we have on our patients’ experiences of illness when we, as a medical community, are debating the best way to treat things. Patients see that, they understand that there is a debate about how aggressive you should be about thyroid cancer, but the fact that we don’t have the answers increases their suffering and uncertainty. I am not sure that we can solve that, but by bringing them into the discussion, we may actually be able to decrease their suffering by helping them to decide how they want to manage themselves in the face of the data that we do have available.