[ Anglais] How Changing Providers Led One CLL Patient to Better Care

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Topics include: Understanding and Patient Stories

What can a second opinion reveal about diagnosis, prognosis and treatment options? Patient Power host and advocate Carol Preston is joined by chronic lymphocytic leukemia (CLL) patient Catherine as she walks through her experience getting a second opinion, changing healthcare providers and getting the best care available. Carol and Catherine also share helpful advice about statistics and prognosis, resources to find CLL specialist nearby, and ways your local oncologist can coordinate with a specialist.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc. and Pharmacyclics for their support.

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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.

Carol Preston:

But I—I was working in Pottstown at the time, which is about an hour outside of Philadelphia, and I was a nurse manager of a kidney dialysis unit, so I had my colleagues who were the managers of the cancer center, and I picked their brains.  They gave me a lot of—back then there wasn't as much on the internet as there is now.  It wasn't quite what it is today, so I relied more on written materials.  

And everything I read said that CLL was a diagnosis or a disease of older men, and I was 38 and a female.  So I was like—and everything I read said from diagnosis to death is like 10 to 12 years. And the physician I spoke to at the hospital that I was working at said, you have to realize that if you're diagnosed when you're 75 or 80 and they give you 10 to 12 years, you know, that could be just your normal life expectancy.  So he said, you're 38.  He said, you can't go by what that says.  

So I took that and ran with it. You know, I said, okay.  I'm only 38, so 10 to 12 years is not acceptable to me, so I got as much…

So watch and wait for me was a totally foreign concept.  I want to fix this because that's just what we do.  And I knew nothing about leukemia.  It wasn't my field.  I was a kidney specialist nurse, so I had a lot of where I just figured, you have leukemia, they give you a bone marrow transplant and away you go.  So I had a lot to learn, and I've learned a lot over the last 21 years.   

Carol Preston:

But I'm wondering if—we've talked a lot about the relationship that you have with your current healthcare teams, but I suspect that you have had discussions with other people who are newbies to all of this, and maybe you've had to calm them down.  So how have you handled people coming to you and saying what should I do?  Where should I go?  How do I handle this?  Shouldn't I—to your point, Cathy, can't I just get this fixed?  Get this cancer out of me as quickly as I can.  

What's been your experience with other people who have actually come to you for guidance?   

Now, he's not to the point where he needs treatment yet, but I've been trying to work with his wife to try to convince him.  I think she just about has him convinced to at least—to go down to Penn and get a second opinion.  

So, again, we want to emphasize, at the very least, be comfortable working locally but get that second opinion from a top-notch expert in the field, and increasingly they are spread around the country.  If you go to the CLL forum on ACOR, for example, A-C-O-R, at the end of every discussion they have a list of CLL specialists.  So there are lots of places to find CLL specialists at least to get that second opinion.  

And then coordinate having that specialist work with your community oncologist.  We don't want to discourage people from working locally. We need or community oncologists. The good ones will coordinate, work with the experts at the major medical centers. 

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 October 16, 2018