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Living Your Best Life After a Cancer Diagnosis

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Published on May 7, 2015

When a patient is diagnosed with cancer, treatment is the next step. As we have been learning, clinical trials are a modern mode of treatment. But it can take time to find the right one, and there are risks. What if a trial doesn’t work, or worse yet becomes fatal? There is paperwork that must be filled out and information that must be acquired to legally bind the patient to the trial. Cynthia Shimizu, an oncology social worker, helps many of her patients through this process every day. She sits with them to cultivate a medical plan that envelops their beliefs, wishes, priorities and goals. Katie Brown, Vice President of Support and Survivorship programs, discusses educating patients on the drug front and misconceptions of clinical trials.

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Moffitt Cancer Center LUNGevity Foundation

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Transcript | Living Your Best Life After a 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.

Andrew Schorr:

So the decision to be in a clinical trial is a big deal.  And it’s actually probably why we have many family members here. I know, for me, I was presented with a bunch of papers, guys.  You can die, which I was worried about that anyway, but from the medicines and all sorts of complications.  You had complications, Tony, side effects in one trial.  So there are a lot of legal warnings, and there’s a lot of work. You come in for scans, and you’re being followed carefully.  

I kind of liked the attention, actually. And I’ll tell you, the nurses are really cute. Anyway, but it may be a family decision on whether you do this. So first of all, one person you can talk to is the oncology social worker about all the issues about do I do this and transportation, and what are the costs, and what should my expectations? Cynthia is an oncology social worker. So, Cynthia, you’re someone they can turn to as they’re trying to sort out their plan, right

Cynthia Shimizu:               

Absolutely.  And to kind of answer that question, I’d like to kind of set the stage. We’re all human beings. And as people, we think about what’s good and right in living? And what kind of a life do we want to live? What kind of a life is worth living?

When you’re in a medical setting, and you see medical specialists, physicians, are concerned, from my social work perspective, with what’s good and right in medicine, and what kind of medicine is worth providing? And that word worth really gets to the heart and soul of values, beliefs and values. And so I think when people have the most successful treatment, their values are absolutely in sync with the treatments that are being recommended by their specialist.

When I sit down with patients and families and start to explore some of that, what’s meaningful to you? What are your wishes, your desires, your priorities? What are your goals? What goals do you want to achieve? And when you kind of voice that and you think it, you verbalize it, it becomes more concrete, more real.

It may be one of the very first times you’ve even had this conversation with a spouse or with your adult children. Once you sort of get that organized in your own mind, and then you meet again with your medical professionals, you can start to share some of that, it’s important, and then start planning together.  And that patient-physician relationship is what really makes the difference between somebody whose treatment doesn’t meet their goals and somebody else who really starts to live well during their cancer treatment.

Andrew Schorr:                  

Okay. Thank you, Cynthia.  I just want to mention, I don’t know how many of you go on the Internet. I love it. I work in that field. But I actually connected with other patients in the trial I was considering. I happened to be in a listserve.  There’s a group called ACOR.

I don’t know if you’ve come across it. The Association of Cancer Online Resources.org.  It’s just one of the groups out there.  And I actually said, “Does anybody know about this trial?”  And so they said, “Well, I’m two months into it.”  And, “I’m three months into it.” I actually called them on the phone.  So when I saw those papers, and I was a little put off by all the legal language, I actually felt more confident because I knew it in terms of people who had been—now, you’ve met people in trials.  So Katie, you’re a navigator.

Katie Brown:

I am. 

Andrew Schorr:                  

And so that’s among the things that you help people navigate about, I mean, broader than that. But part of it is what treatment, with maybe a trial being one of the options, how to think through that. 

Katie Brown:     

Right. So a lot of times, when patients come to us through LUNGevity Foundation, they are looking for information and education about clinical trials. So we’re not actually suggesting which trials that they go to, but we’re providing information on what they are.

What clinical trials are? There are lots of misconceptions out there of what a clinical trial is.  And a lot of people don’t understand that it is a viable option, like we’ve heard here today. 

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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