Gilles Frydman, Founder of ACOR.org: How Self-Advocacy Saves Lives

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Topics include: Living Well and Patient Stories

Some patients may feel obliged to stay with one physician but how can they be sure they’re getting the treatment most suitable for their diagnosis? Are first opinions always accurate? Gilles Frydman, Founder of the Association of Cancer Online Resources (ACOR), shares his experience advocating for his wife’s treatment, and how research, networking, and open communication led to more confident decision making and changed the course of treatment for the better. 

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Transcript

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:

Andrew Schorr in Palo Alto, California, at Stanford's Medicine X.  This man made a big difference in my life, Gilles Frydman.  First of all, hello, my friend. 

Gilles Frydman:

Hello. 

Andrew Schorr:

Cheers. 

Gilles Frydman:

How are you? 

Andrew Schorr:

Good, I'm good.  So how did you make a difference for me and thousands of others?  Let me see if I get this right.  1995, you and your wife at the time were dealing with breast cancer, right

Gilles Frydman:

Early stage, yes. 

Andrew Schorr:

Early-stage breast cancer.  You were trying to get information in New York City, and you were frustrated. 

Gilles Frydman:

No, not frustrated.  So seven years prior to the day of her diagnosis with early-stage breast cancer she had a second open heart surgery. 

Andrew Schorr:

Wow. 

Gilles Frydman:

She had very intense case of a cardiac condition and she was pregnant for the first time.  At that time, we dealt with an absolutely amazing medical team, very complex medical condition.  The whole thing was intense, including the cardiologist that referred us through this medical surgical team.  Seven years later, she gets diagnosed with breast cancer, but the cardiologist has become the family doctor, he's an internist. 

And he made fatal decision.  When he heard she had been diagnosed with breast cancer his institution, medical institution is known to be not good at all for anything cancer, but he still referred us to a breast surgeon within his institution, not a breast oncologist, breast surgeon. 

And so we went to see this doctor.  He said, you don't have to worry.  He said, you're in very good hands.  Don't worry.  You come tomorrow.  We're going to do a full mastectomy, and then we'll start you with chemotherapy, and just to make sure we'll do brain scan, liver scan, bone scan.  So I leave that—I leave her office with the impression that my wife has like terminal cancer, and she's going to die very shortly. I get on the Internet, and in two hours I learned that she in fact had been diagnosed with earliest stage of breast cancer, that mastectomy should absolutely not be the way to treat this, that now for 15 years the standard of care was a lumpectomy, that chemotherapy would be useless and is going to create all kinds of problems.

So I called them, and I said we're going to go tomorrow, we're going to go for a second opinion, cancel the surgery.  And we got fired.  The patient got fired by the doctor because we went for a second opinion. 

Andrew Schorr:

Now, let me just skip ahead a little bit.  Gilles then started a foundation, Association of Cancer Online Resources, ACOR.org, and then other patients and family members started leading communities, one of which in 1996 I found for hematologic malignancies with a woman we knew as Granny Barb Lackritz. 

Gilles Frydman:

So when we started ACOR—so my wife was diagnosed in June '95.  In September '95 said what's happening on the Internet is just amazing.  We should create an organization.  First, we should archive all the conversations that on the Internet about cancer.  And then there was an explosion of the number of  Internet communities, and then there was an explosion of the number of families within three months.  I said we should create a big organization that is going to create communities for every condition.  So by '96 we had a hundred communities, and '97 we had 150. 

Andrew Schorr:

Right.  Now, what difference does it make?  So now a year later, '96, I'm diagnosed with chronic lymphocytic leukemia.  My neighbor finds the hematologic malignancy community on ACOR.org.  The woman who is running it, Granny Barb Lackritz, counsels, and the other patients, Esther and myself, said you need to get a second opinion.  Gilles was just talking about that.  And you need to connect with a specialist in what you've got, which had us then go from Seattle, Washington, to MD Anderson in Houston, Texas, to see somebody who devoted their life to my illness, and that led to being in a clinical trial, which has been life-saving and life-extending. 

It started with this man and his experience with his wife getting fired by the doctor who was not really up to date, and Gilles bringing people together and setting the platform for that.  So have you ever thought about lives that your seed that you planted extended and saved? 

Gilles Frydman:

Sure. 

Andrew Schorr:

Do you think about that? 

Gilles Frydman:

I wake up every day and look in the mirror, and I smile. 

Andrew Schorr:

I got to give this man a hug for this.  We both have the same haircuts.  This is where it starts, with me, an unmet need, patient-driven, family-driven and innovation.  And thank God for the Internet, right, which has given us a way to…

Gilles Frydman:

…the power of the network is just magical.  It's really transformative. 

Andrew Schorr:

Right.  Right.  And then you later started another organization, Smart Patients, which continues.  So Gilles is here at Stanford Medicine X as one of the patient leaders or family member leaders and really documenting now with your photography for people who are participating.

Gilles Frydman:

Yes.

Andrew Schorr:

Yeah.  Thank you for all you do, Gilles. 

Gilles Frydman:

My great pleasure.

Andrew Schorr:

Okay.  Andrew Schorr…

Gilles Frydman:

…somebody had to do it. 

Andrew Schorr:

Yeah, somebody had to do it, but somebody has to step up and do it and you have.  So Gilles Frydman…

Gilles Frydman:

…in all honesty, I may have been the one that started it, but it could never have been successful without the hundreds of volunteers like Granny Barb. 

Andrew Schorr:

Yeah, like Granny Barb. 

Gilles Frydman:

They're much more important than I am. 

Andrew Schorr:

Yes, but you're a catalyst.  Catalyst makes things happen, and it's really remarkable, so thank you again.  So here we are in Palo Alto.  The conversation continues, and you all are part of it.  Andrew Schorr with Gilles Frydman in Palo Alto, remember, knowledge and innovation and speaking up and being an advocate can be the best medicine of all for sure. 

Gilles Frydman:

And questioning everything. 

Andrew Schorr:

Right.  

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 25, 2017