Advocating for the Best Prostate Cancer Care

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Topics include: Treatment

How can prostate cancer patients stay informed about the latest treatments and advocate for the best care?  Patient Power founder Andrew Schorr asks this question of an expert panel, including Dr. Daniel Petrylak,from Yale University Cancer Center and Darryl Mitteldorf, Executive Director of Malecare. Learn why the panelists emphasize patient education and healthy communication as key components in the overall health of a patient. 

This roundtable discussion is a Patient Empowerment Network program produced by Patient Power. We thank Sanofi Oncology for their support.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Andrew Schorr:

Darryl, our audience is listening and they’re hearing about subsets of prostate cancer and wondering who should get androgen deprivation therapy, who shouldn’t, who maybe could qualify for even a trial for an immuno therapy. They’re saying how do we know what’s rightfor me, and what do I ask for?

Darryl Mitteldorf:             

That provokes the most interesting question so far. Part of the work of social workers like myself and groups like Malecare is translating what Dr. Petrylak, Dr. Kantoff and others and we all are saying. For example, you mentioned the germ line. Probably 999 out of 1,000 patients don’t know what we’re referring to.

Andrew Schorr:

That’s Greek. 

Darryl Mitteldorf:             

Patients are trying to make decisions in a very concrete and very simplified manner, not so much because they’re ignorant or lacking intelligence or the capability to understand the difference between a somatic line and a germ line, or what a PARP inhibitor is, how it relates to the BRCA and on and on. It’s because cancer has invaded their lives. For us, it’s a career. For them, it’s an imposition and they want to get on with living. So treatment choice-making is done at a very primal, very basic sort of “tell me what to do” level.

And as we get more and more involved in shared decision-making and understanding what the responsibility of a patient is in terms of the conversation with their physicians, the physicians have to understand that language matters. The semiotics of treatment planning matters to a patient. Patients want to know what direction to go, as you’re pointing out. It’s a difficult thing. As we have this wonderland of new therapies and more to come, the challenge is on the table.

Andrew Schorr:

We advise people strongly to ask questions. If you don’t feel comfortable doing it, bring someone with you who you trust who can ask questions, take notes. Do your homework when you can. It can be very emotional if you’re the patient. You’re tongue-tied.

So knowing what you guys know and what’s in the lab, what could be coming, what would you advise men or somebody who’s helping support them so that they can get at what will be right for them with their version of prostate cancer, their stage of prostate cancer?

Dr. Petrylak:       

Patient education is extremely important. Communication with your physician about what standard therapies are, what’s involved with the treatment with the side effect as you mentioned before, the hot flashes. With hormone therapy, we also see that the bone can be depleted, the muscles are depleted as well. Sexual function is lost. But what the doctor and the physician have to do as far as shared decision-making is concerned is evaluate the risks, evaluate what the benefits are.

And also, since patients often have this journey that goes on for many years, what is the impact on their general health? Because we’re not just taking care of the cancer for many patients who are living 15, 20 years with the disease. We’re taking care of the overall patient.

So I think it’s important to have a good discussion about what these treatments mean in terms of their survival as well as what the side effects are going to be.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

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Page last updated on July 13, 2017