Genomic Testing May Increase Fear of Recurrence

Genomic test results – especially if they indicate higher risk – may increase breast cancer survivors’ fear of recurrence, according to recent research.

Nurses should be aware of these findings, as well as other indicators of fear of recurrence, said study author Maurade Gormley, CPNP, RN, assistant professor and faculty fellow at the NYU Rory Myers College of Nursing. Gormley, who is also a post-doctoral fellow, recently discussed her research in an interview with Oncology Nursing News.

Oncology Nursing News: Can you talk about your research on fear of recurrence regarding cancer genetics, and why this is an important topic?

Gormley: Fear of cancer recurrence is one of the greatest unmet needs among breast cancer survivors and things like health care provider visits or going in for a mammography can certainly trigger a fear of cancer recurrence. But we don't know how women or other survivors respond to genomic testing that tells them a factual risk of recurrence. So that was a gap in the literature that I thought to learn more about.

The Oncotype DX test can be very helpful in terms of helping women avoid unnecessary chemotherapy or recommending chemotherapy for women who might not be indicated to receive it based on clinical factors alone. So it's very helpful in that regard, but you are telling women objective risk. How are women responding to that? Is that something that's very helpful for them to know? Or is it something that's triggering a lot of fear. And so essentially, I recruited 110 breast cancer survivors, and they answer questionnaires about their fear, their health-related quality of life distress, their illness representation, and their perceived risk.

What were the findings?

Oncotype DX puts risk into low-, intermediate-, and high-risk categories. Women who are in the high-risk category, which means that they need to have chemotherapy in conjunction with endocrine therapy, had higher fear compared to women in the low-risk category. And women in the low-risk category only need to have endocrine therapy; chemotherapy does not provide any additional benefit to them. So that really tells us that a higher objective, recurrent score or risk of recurrence is associated with higher fear.

But then we did a regression analysis. And based on that, we were able to determine that it was actually anxiety, and certain types of illness representations that were the best predictors of fear. So for instance, women's perceived consequences of their breast cancer diagnosis [including worries like] this will have major consequences in my life; financial implications; or it will have implications to my family [and] affect other people in my life, and then also the degree of emotional upset from the diagnosis of cancer. So, it causing anxiety, anger, uncertainty, all of those things, were actually the best predictors of whether a woman would have higher fear or not.

What are the practice implications that oncology nurses should take away from these findings?

What's important for oncology nurses and other health care providers to know is that for women, receiving the Oncotype DX test or any other genomic tests predicting risk of recurrence, they need to make sure that the women are correctly understanding the test results. The population that I recruited, did have a high level of education income and was primarily White. So this does need to be assessed in the context of health literacy.

The best we can do for now is make sure that women are understanding the test results from the Oncotype DX test. And then the other thing to remember is that women with a higher score may have higher fear, but not necessarily, so every patient is going to be different. There were women in the study that had a low risk of recurrence, but very high fear. And there were women in the study who had a very high risk of recurrence, but low fear.

There are brief screening measures that can be done, that should be done and just being on the lookout for things like illness representation. So you know, women coming in and saying that this breast cancer, they're worried that it's going to have the severe consequences on their life, or they've been feeling very anxious about it very uncertain, those should be red flags to a patient that would be at high risk of developing fear of cancer recurrence, because your cancer recurrence is associated with a lot of other psychosocial sequelae, which is what we found in the study, and, and is consistent with the literature. So, it's associated with things like poor health related quality of life, distress, anxiety, depression, greater perceived risk, so it is really important to assess. And unfortunately, these symptoms emerge often in the survivorship period, because you're in this acute phase, when you're receiving treatment, you're so focused on that. And then when you know, leave your treatment, you're not in as structured of a system where you're seeing your providers regularly. And so that's when a lot of these psychosocial sequelae, and these fears can emerge.