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Survivorship Is Not Just Surviving

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Published on March 1, 2020

Key Takeaways

Life after cancer treatment can be full of questions around long-term side effects, both physical and emotional. Watch as patient advocate and two-time cancer survivor Susan Strong talks about the challenges and opportunities for both long and short-term survivors.

 

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Transcript | Survivorship Is Not Just Surviving

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.

Andrea Hutton:       

Hi. I’m Andrea Hutton with Patient Power, and I am here at the San Antonio Breast Cancer Symposium. I’m very excited to be at the largest breast cancer conference in the world, and I’m here today with Susan Strong, who is a patient advocate, survivorship activist, and she’s very graciously agreed to talk to us about who she is and what she does.

Susan Strong:           

That’s great, Andrea. I’m happy to be here. 

Andrea Hutton:       

So, Susan, you have sort of a long cancer story. Can you talk a little bit about how you ended up here?

Susan Strong:           

Sure. Right. Yeah, when you talk about Patient Power, I kind of joke and say I’ve been a practicing patient for 37 years, because I was diagnosed with Hodgkin’s lymphoma when I was only 17 years old and had great treatment, great results, and was followed five years—kind of the typical thing—and then told, “Go live your life” after five years. 

And I was only 22, basically, when I was released from oncology care and I didn’t really revisit that again for a long time—for more than 30 years. And then about seven years ago, I discovered something that I really didn’t know much about and that was late effects from cancer treatment. And so that’s why I’m kind of an activist now about long-term survivorship.

And I was treated with mantle radiation—which is not done now—but there was a 30-year period where that was the standard of care especially for lymphoma patients and we’re finding decades later that there are ramifications from that of secondary tumors and leukemias and heart problems, and I’m experiencing some of those. And that’s what brings me here to the breast cancer conference because I am a two-year survivor now of breast cancer. 

Andrea Hutton:       

So, as if you didn’t have enough clubs to join before, now you’re also a member of my club.

Susan Strong:           

Yeah. Thanks. Thanks for letting me in.

Andrea Hutton:       

Yeah. Nobody wants to be in this club. Sorry. And so just as a patient having gone through these experiences, what drove you to attend a medical conference?

Susan Strong:           

Yes.

Andrea Hutton:       

A scientist conference.

Susan Strong:           

I’ve been to many, actually. I’m a teacher, so maybe that’s part of it. I love to learn. But even beyond that, I’m very passionate when I see unmet needs, and there are survivors out there—especially long-term survivors—that aren’t aware that they might be at increased risk for other issues and so I have a real passion to make sure that survivors know about it, and also the medical community because not the entire medical community is aware of the late effects for cancer patients. And so, I’m very passionate about educating patients and providers and just raising awareness.

Andrea Hutton:       

Because one part of finishing your cancer treatments—if you’re lucky enough to finish treatments—is that then you survive. But what does that look like? 

Susan Strong:           

Right. There’s an idea of like just getting back on the horse and riding your life and riding out into the sunset and going back to your life. And I think a lot cancer survivors find that—once treatment is complete—they feel in ways that they didn’t expect to feel even emotionally just starting with that, thinking, “I should be getting my life back and this doesn’t feel like that.” And the support tends to change—maybe disappear—because I think other people expect you to get your life back or go on with your life.

Andrea Hutton:       

Like, “Oh, you’re done.”

Susan Strong:           

Yeah and I think survivors are surprised that they feel quite different. And I’m also passionate about the emotional aftereffects of being a cancer survivor, the anxiety that we deal with, and depression sometimes and self-care.

There’s just so much about being a survivor and learning how to have the best life after cancer diagnosis and what that looks like and empower survivors. And advocacy, for me, has been very empowering and taking the experiences that have been some of the hardest experiences of my life and transforming those into something that’s positive, that’s empowering for me and others, I’m happier than I’ve ever been to be in this position.

Andrea Hutton:       

So, I hear that word advocacy a lot. I mean what does that mean? What does that mean to you?

Susan Strong:           

Right. I didn’t know what it meant when I started. I think it’s feeling passionate about something, seeing unmet needs, deciding you want to make a difference, and then saying yes to a lot of things, but saying yes because it is your passion. And then just discovering it’s a lot of different things and advocacy, I think, can be a broad definition. But for me, it’s been getting involved in cardiology issues, in cardio-oncology issues, and breast cancer, and childhood cancer, in survivorship, in self-care. 

So, for me, it’s been very broad, and it’s actually been very exciting, because I’m getting to meet so many smart, interesting people and hearing stories—patient stories—that are inspiring. Because sometimes—you may have experienced this too—you minimize your own experience, but you hear another person’s and you’re just brought to tears by it, and you don’t realize that your own story can have that impact on others. Sometimes advocacy is just telling your story.

Andrea Hutton:       

Yeah, absolutely. I think that’s part of it too is that recognizing sure there’s advocacy on a large, national scale, but there are also things you can do in your own community that help someone else that includes that. That is also advocacy.

Susan Strong:           

Absolutely, absolutely. Even just like, for me, I have found Facebook groups, and I have reached out to patients and received it myself and that’s a form of advocacy of just sharing your own experience with someone else and offering them hope and encouragement or offering them a question to ask their doctor that maybe they wouldn’t have thought of.

Andrea Hutton:       

So, you said self-care a couple times too. So, tell me what you mean by self-care and how do I do that?

Susan Strong:           

Yeah. I’ve gotten really good at self-care. Things that I used to think were luxuries I see now as really being part of self-care. For me, getting massage regularly is part of self-care. If I don’t, I have chronic pain. But I do not have chronic pain with massage. It’s an effect of the radiation that I received. Actually, I think it’s called radiation fibrosis. So that, seeing a counselor. I think that cancer is a form of trauma for a lot of people.

Andrea Hutton:       

Absolutely.

Susan Strong:           

And seeing a therapist who specializes in trauma I think can be very helpful. Sometimes patients think they need to find a therapist who has an expertise in dealing with cancer, and I have found that those practitioners are maybe a little more difficult to find, or they might be in a hospital setting and sometimes cancer survivors going back to another appointment at the hospital is worse. 

Andrea Hutton:       

It just makes it worse. 

Susan Strong:           

And so, I have personally found and talked with other survivors who have found great benefit in working with therapists—you know psychotherapists—who specialize in trauma. And I think looking at cancer through the lens of trauma—and there are proven techniques that help with trauma—is a really great way to get some relief. And then just self-care of learning love and acceptance for yourself, not being so hard on ourselves, not being so critical of ourselves, having good boundaries, being able to say no, all those kinds of things.

Andrea Hutton:       

Easy things.

Susan Strong:           

Right, yeah.

Andrea Hutton:       

Well, do you have a single takeaway from this experience so far?

Susan Strong:           

That I’m coming back. This was my first time. I had no idea. San Antonio Breast Cancer Symposium sounded like it’d be a small thing to me, but I had no idea it was the largest conference on breast cancer ,and there are people from all over the world, and the brightest people are here. There are so many opportunities for survivors who want to advocate to go to trainings to learn more about the science, to know more, to be able to be a patient voice in research that’s being done. I did the Scientist Survivor Program, and I’ve done the Project LEAD. 

Andrea Hutton:       

From the National Breast Cancer Coalition?

Susan Strong:           

From the National Breast Cancer Coalition.

Andrea Hutton:       

There are organizations that offer training programs for patients who are interested in learning what to do next.

Susan Strong:           

Yes. 

Andrea Hutton:       

Not just for their own care, but if they are interested in having a bigger voice and sharing their story, there are national organizations that help you learn how to do that.

Susan Strong:           

Absolutely. Yes, and there are scholarships for patients to attend these kinds of conferences. So, you know if that might keep someone from coming thinking, “You know I can’t afford to send myself to conferences that I want to go to.” Start off by applying for scholarships.

Andrea Hutton:       

That’s excellent, excellent news. That’s true. Anybody can do this.

Susan Strong:           

Right.

Andrea Hutton:       

You’re doing it. I’m doing it. Anybody can do it.

Susan Strong:           

Right, exactly.

Andrea Hutton:       

Well, thank you so much.

Susan Strong:           

Thank you.

Andrea Hutton:       

And thank you for offering us a little window into some more knowledge and a lot more hope about what’s next for survivors and survivorship. 

Susan Strong:           

Yes. Thanks.

Andrea Hutton:       

Thank you so much.

Susan Strong:           

Thanks, Andrea.

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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