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Sue’s Story: How Getting a Second Opinion Changed the Course of Care

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Published on October 2, 2018

A valuable part of chronic lymphocytic leukemia (CLL) care is getting a second opinion. How can those living with CLL benefit from an additional perspective? When should patients consider a second opinion? CLL patient Sue shares her experience getting a second opinion, how a second opinion completely changed the course of treatment, and how it helped her navigate her care with confidence when presented with other, more suitable treatment options for her rapidly progressing condition.

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

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Transcript | Sue’s Story: How Getting a Second Opinion Changed the Course of Care

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:

Sue, could you share with us how you got—how you got into this coffee clatch with this morning, this afternoon?  

So he referred me to a local oncologist, and they started monitoring me.  And during this time I was really quite ill, and it was progressing very, very rapidly, the white blood counts, everything.  And this was from February until the first of June, and I went to see the oncologist, and he said we need to start treatment right away. We're going to put you on FCR.   

And I for some reason decided, I said, would you please give me a couple of extra slides of my blood work. And he did.  He said, yeah, I'd be happy to.  What are you going to do with them?  And I said I'm going to send them to a friend of mine who is a CLL research—he's a blood cancer researcher at the Huntsman Institute in Salt Lake City. And I sent them to him.  

He immediately wrote back and said, do not start treatment.  Get a second opinion.  He said you are—I don't know if you can get in to see Dr. Kipps, but he's the best one close to you.  So I cancelled my appointment to start treatment.  I called down to the UC San Diego in La Jolla.  I said they want to start treatment, and they said, send us all of your paperwork.  I sent a fax, and within 45 minutes after I sent the fax I got a call, and they said, the doctor wants to see you next week.   

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