Debra Madden: Oncologists Should Anticipate Patient Concerns About Immunotherapy

When helping cancer patients decide if immuno-oncology treatments are right for them, clinicians should not focus only on the potential risks and benefits, said Debra L. Madden, cancer research advocate and patient representative. Oncologists should ensure patients are aware of the variable responses to the therapy, like the phenomenon of pseudoprogression.

Transcript (slightly modified)

How can researchers and clinicians present the promises and breakthroughs of immunotherapies without giving patients unrealistic expectations?

That’s very important, that really managing expectations was kind of the theme of what my talk was about yesterday, and that means really talking about what we do know and what we don’t know concerning these agents. I think it’s very important that in addition to talking about the potential benefits and harms, they also talk about really how variable the responses can be. Again, the fact that some patients do remarkably well, but others have no effect. It’s also important that patients understand the unique spectrum of potential adverse events.

Also, there is this phenomenon known as pseudoprogression. It’s not going to happen to every patient, but it can affect some. And the thing is that traditionally with solid tumors, when there was an assessment of how well the patient was doing and how well they were responding to a particular treatment, it would involve imaging to determine whether there was progression. With some of the immune-oncologic agents and some of the patients, what may happen in some cases is that the patient is responding to the medication initially, but there are T-cells that are starting to infiltrate the tumor, so it may look like the tumor is actually getting bigger. However, they’re having a response.

So, this could be pretty scary. They may feel, they’re saying that they’re feeling, they’re having symptoms that their tumor burden is increasing. Traditionally that would mean that there’s progression, but ultimately, that so-called progression may go away. So patients and caregivers need to know about the possibility of this phenomenon.

They also need to understand that the response to some of these immune-oncologic agents — and I think I should stress I’m talking primarily about the checkpoint inhibitors at this point – some patients, most of the lesions may seem to have this wonderful response, but one of the lesions perhaps will get bigger. Maybe there will be some new, smaller lesions that develop. That doesn’t mean that you’re not having a response.

So they need to understand that this really, this is a different area. Really sharing and anticipating what the concerns might be of the patients as much as possible, and talking about this upfront when patients are deciding if this is indeed something that they want to do.