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The Personal Guilt of a Metastatic Breast Cancer Diagnosis

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Published on June 22, 2020

A metastatic breast cancer diagnosis may come with feelings of personal guilt. How can you get past this feeling when you know you did everything “right,” but the cancer still came back?
 
In this segment from the second episode of our eight-part Let's Talk: Metastatic Breast Cancer series, host and MBC patient advocate Pam Kohl asks her own oncologist, Dr. Jeremy Force of Duke Cancer Institute, how he talks to his patients about this important topic. They also discuss how Dr. Force answers the question, "How long do I have?" Watch to learn more.

This program is sponsored by Seattle Genetics. This organizations have no editorial control. It is produced by Patient Power and is solely responsible for program content. 

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Transcript | The Personal Guilt of a Metastatic Breast Cancer Diagnosis

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.

Pam Kohl:

Hi, I'm Pam Kohl. And welcome to episode two in our Let's Talk About Metastatic Breast Cancer series. I first of all, want to thank our generous sponsor, Seattle Genetics for their support of this series. And as always throughout the series, Patient Power does maintain all editorial control.

So, I'm here today, I'm delighted to be here today with Dr. Jeremy Force, who is my doctor. It's great to see you when I'm dressed and in my own home, and not in a hospital gown. So Dr. Force is with Duke Cancer Institute and he's been my oncologist, I guess, for the last two and a half years. And we have a great partnership. So welcome, Dr. Force.

Dr. Force:

Thank you so much for having me. I'm very excited to be involved in this and participate in this really unique and innovative platform to spread the word across the nation, and hopefully beyond that, about metastatic breast cancer. And I look forward to this conversation.

Pam Kohl:

Me too. So let's just dive right in. So we talked a lot about, or earlier about how we as patients feel after we have been diagnosed and been told that we were cancer free. And then we come up later with metastatic breast cancer. When we've done everything you all have told us to do. And some of us feel guilty, and some of us feel like, well, what did I do to make this happen? Was I under too much stress? Did I drink too much wine with dinner? Is it our fault? What did we do wrong? How do you talk to your patients about that?

Dr. Force:

It's a common theme that we discuss in unfortunately many situations with patients that I care for. And it's a natural component for people to feel guilty. When we talk about it, and in my clinic, it's mostly I do a lot of listening. Just to hear what their issues are, what is bothering them the most. And I try to emphasize just try to be kind to yourself, kind to one another, because it's not something that you did. None of what you did probably mattered much in terms of the development of metastatic disease. It's no one's fault. And I try to emphasize those features. It's not my patient's fault. We don't know why this happened. But I also try to instill a lot of hope, because there are good therapies that we can utilize in these situations and still really help people to live a good quality of life and lengthen it. And so while no one wants metastatic cancer in general, that feeling of guilt is pretty natural. And I try to primarily just listen and then emphasize just being kind.

Pam Kohl:

And I think a lot us end up feeling that guilt even once we have metastatic breast cancer, and are involved in treatment, et cetera. I think we still feel that sometimes when we have a progression. That maybe I missed a palbociclib (Ibrance) pill, or I did this, or I did that. So the guilt and the anxiety certainly continues.

One of the things I find so interesting and you and I have talked about this many times is about three years ago when I was first diagnosed, I was told the average life expectancy with where my tumors were, et cetera, was maybe three years. And that was about three and a half years ago. And we now know because of researchers like you and others are doing such amazing work, trying to find the cures, find the treatments, that that's not necessarily... I don't know data-wise, it still may be true. In terms of the average, whatever.

But I know so many people who are five years, eight years. And thanks to your aggressive treatment of me and my new meds. I'm still on my first line of therapy. And so now we are, I feel like intuitively, no data to prove it, that we are able to live longer. And our goal is to live long enough to get that new research. So what are you telling your patients now when they're first diagnosed with metastatic? And some ask that question, how long? And some don't, I'm sure. But what's your philosophy about that now?

Dr. Force:

Yeah. No, it's a great question. And you're right. Not everyone wants to hear that information, because sometimes it's a tough pill to swallow. So I like to frame things in a sort of best case scenario and worst case scenario frame. And then just sort of say, "We might meet somewhere in the middle." Where in one case we have treatments that will allow someone to take pills for many, many years, if not decades. And some people, their disease might be faster growing. And we'll need to contemplate switching therapies earlier and/or maximizing supportive care, and/or thinking outside of the box.

Whether it be cryotherapy or radiation therapy and thinking about how can we minimize the bulk of disease in order to maximize patient's quality of life? And extend their life for as long as possible. But that's how I frame it. Because there is really no way to tell, until somebody starts treatment. And then once you start seeing the response, it really is the matter of how long is that response going to last. We do know that for every subsequent treatment somebody goes on, the treatment becomes less effective.

Pam Kohl:

Right.

Dr. Force:

That's why it's been a big strategy of mine with you specifically to try and maintain you on this for as long as possible.

Pam Kohl:

Right. And I love how you described it. I've been trying to talk about it. And I love how you said, "We're trying to reduce the bulk of disease." And at the beginning, at the early stages, so that you have less of it. Even though I still know I'm not cured. But to be able to go and have cryoablation or some kind of radiation, that's a great explanation to me. And I know that that's kind of a new approach as well.

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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