Providing safe care to hereditary cancer patients and families

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Published: 8 May 2019
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Suzanne Mahon - Saint Louis University, Missouri, USA

Suzanne Mahon speaks to ecancer at ONS 2019 about how oncology nurses can provide care to hereditary cancer patients and their families. 

She outlines how genetic testing has changed, when patients (and families) should be referred for testing, and how testing can provide recommendations for care. She also explains the current limitations with regards to availability of specialists.

Suzanne concludes by explaining that oncology nurses role in genetic testing is crucial, as they are able to identify families who may benefit from testing and support them through the process.

This morning I was able to speak about what do the nurses need to know and what is involved in genetic testing. Genetic testing has evolved from the late ‘90s of just being able to order BRCA1 and BRCA2 testing to now I’m usually ordering 40 genes on many of my families, the interpretation is much more complex than it used to be. So it’s not just a simple blood test anymore and it has a lot of far-reaching implications for family members as well. We touched on what are some of the limitations when genetic testing occurs outside of having formal genetic counselling and what are some of those limitations.

How has genetic testing changed over the last 20 years?

The complexity of testing has really just mushroomed in the last few years. When I used to see patients we would be talking about one particular gene and what the risks are with that particular gene should there be a positive test. Now I’m saying, ‘We’re going to test you for all these genes; we’re going to wait and see what happens. If there’s a positive then we’ll look at that particular gene and we’ll say, “That’s associated with this and this and this,” and then we’ll make recommendations for care.’ So patients go into it with a lot more… it’s non-specific. They know that they could be at risk but they don’t know what. A lot of those patients will say, ‘Well, where do you think my risk is going to be?’ and I might point to a couple of genes, like the risk might be higher there, but if it was that easy we wouldn’t have to order genetic testing.
How have these changes affected cancer care, screening and treatments?

In the past few years we now know that patients who have some specific mutations we may recommend risk reducing surgery but it’s also changing sometimes our specific chemotherapy treatments. Sometimes patients who are BRCA positive it might change whether or not we offer them a PARP inhibitor for their therapy. Patients with Lynch syndrome, if they have microsatellite instability it provides us information about prognosis. So those are important things for families to know as they approach treatment as well.

What is the role of oncology nurses when it comes to providing care to patients and families affected by hereditary cancer?

One of the most important things for all oncology nurses, regardless of where they practice, is for them to be aware of the red flags that would suggest that someone should be referred for counselling. So there’s cancer at a younger age than you would expect; there’s more family members than you would expect. The one I always say is that if the family member is concerned about it that’s a big enough reason to go ahead and offer testing. I don’t think there’s ever a wasted appointment when families come and explore. If I say, ‘Well, we don’t really think there’s hereditary risk,’ that’s okay but we can explain to them why they don’t think and help correct some of those misconceptions. So I don’t think it’s wrong for anyone but I want all oncology nurses to be able to say, ‘Hey, that’s a family that should be considering, should be at least offered to learn more about testing.’

What are the challenges of genetic testing, both for the care provider and patient?

One of the biggest challenges we’re seeing in oncology practice is that there are not enough persons such as myself whose sole focus is to do genetic counselling and education all day long. It’s an area where we need just so many more oncology nurses to get that training and then to have the dedicated time to do that all day long and provide that care for patients. When we find a mutation in one family member a genetics professional is going to take care of the entire family so I’m not just impacting that one patient that referred but I could be impacting many family members. Right now I just tested last week the 54th family member from one family, that’s 54 individuals whose lives have been changed and they understand their risk because of our care. So it’s very important from a public health point of view.

What was discussed in the session regarding advice on noninformative or unclear results?

A lot of times patients when we do multigene testing and we’re testing some of these newer genes that have only been on the panel maybe 12-18 months, we will get a result that’s called variant of unknown significance, meaning there’s a change in the genetic material and we’re not certain if it’s a harmless change or a harmful change. We can’t really act on that so a variant of unknown significance is considered a non-actionable result. But it’s confusing to the patients because they’re like, ‘Maybe we found something,’ and maybe we did and maybe we didn’t but we can’t reach out and test other family members. One of the best ways to manage that is to see if we can get that family enrolled in a variant reclassification study to try to move that along.

What do you want to see happen in the future of genetic testing?

I want to see more oncology nurses really identifying families and then supporting them through that process and having enough knowledge that they can do that. It takes a whole team of people to care for an oncology patient and genetics is a piece of that.

What is your take home message for oncology nurses?

Genetics is something that oncology nurses are going to be continually challenged to learn and to understand more. It’s not stagnant, it’s growing at an exponential pace and they need to have enough information that they can provide safe care to patients. They need to learn to listen to patients and if the family is expressing concerns to know where to refer them in their community and they need to know when they should refer patients.