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TNBC Oncologist Recs for My Mom

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jessica02 View Drop Down
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    Posted: Sep 09 2013 at 7:58pm
Dear All,

Hello, I just joined this forum today and fortunately found it after doing endless Google searches!  

My mom was diagnosed with TNBC in August 2012.  It's been kind of a mess in terms of the number of people treating her and the quality of care she's gotten since her diagnosis.  She had a mastectomy with one UCLA surgical oncologist, underwent chemo with another non-UCLA oncologist, and has had 1 or 2 follow-up appointments with another UCLA oncologist.  My mom now wants to find a *quality*, experienced TNBC specialist who takes the time to look closely over patients' details, who can be her sole "quarterback" oncologist, and who can recommend long-term and short-term TNBC management/care.  None of her doctors has really honed in on the details of her subtype, which fortunately does not seem too scary, but when I pointed out the Ki-67 score to one of them to ask how it affected the choice of chemo she would receive, the oncologist didn't even know what her Ki-67 score was -- and not because he forgot it.  It seemed pretty clear by the way he answered that he hadn't bothered to look at it on my mom's path report, which I'd hoped he would do before prescribing 6 rounds of chemo!  That is just one example of our dissatisfaction; there are a few more examples, unfortunately.

Basically, we'd like an oncologist who is thorough and gets to know each patient's situation as much as possible.  

We live in a suburb of Los Angeles, CA and are willing to travel.  My mom's internet skills aren't too great, so I'm doing the research for her and hope to present her with some names and bios.  I'm hoping to find a caring, thorough, outstanding oncologist for her.  The first place that came to mind was MD Anderson -- because my dad is being cared for at MDA for his own cancer, and luckily we found an oncologist for him who has been excellent.  Is there a TNBC oncologist at MD Anderson that you'd recommend?  Or perhaps at other centers?

Any recommendations / leads would be so appreciated.  I am happy to communicate offline / by email as well.  

Thank you so much and prayers to everyone,

Jessica

p.s., my mom's diagnosis and treatments -- grade 2, DCIS, invasive ductal carcinoma, Ki-67 score at 75%, 1.6 cm-sized tumor, and the tumor spread to her lymph node, some of which were removed.  Mastectomy of her right breast, then 6 rounds of chemo, no radiation, August 2013 mammogram of her left breast was NED.



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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Sep 09 2013 at 10:25pm
Hi Jessica,

Steve is a patient advocate from the LA area.  He may have more suggestions, but here's one he posted a while back.

Originally posted by steve steve wrote:



I would add Dr. Mark Pegram to the list from Stanford. He is head of the Breast Clinic there.


warmly,

Steve
 

Another suggestion if you are going to MD Anderson would be Dr. Jennifer Litton.



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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jessica02 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jessica02 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2013 at 6:46pm
Thank you, Donna!!  Are Drs. Pegram and Litton specialists who've been highly recommended by others?  And, yes, Steve's suggestions would be great too.... I've been looking through past posts and see that he's posted a bunch of possible names.  Thank you again.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kiwikid Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2013 at 7:22pm
Hi Jessica - I have just been to Stanford to have a consult with Dr Pegram to seek a second opinion on treatment options and look at possible drug trials. We travelled from New Zealand for the consult.
 
We were very impressed with the team at Stanford and the consult with Doctor Pegram exceeded our expectations.  I would highly recommend that you add Stanford as an option.
 
Your Mum is lucky to have you researching and pro actively making sure she gets the best advice possible. Well done xxx
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2013 at 7:43pm
Hi Jessica,

Also at Standford, Dr. George Sledge is now the head of Breast Oncology. He is excellent, very compassionate, and very, very knowledgable about TNBC. I would highly recommend him!

I would suggest sending Steve a PM and talk to him in person, he too is wonderful!

Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2013 at 8:55pm
Hi Jessica,

I am glad you are working so diligently to help your Mom.

I am sending you my contact info and hopefully we can talk in the next few days.

Just moved from Los Angeles to San Diego and it's been a bit hectic. Going to Seattle on an overnight trip to help a patient. 

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jessica02 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2013 at 6:30pm
Thank you so much for the input, Kiwikid.  And I'm sorry for the delay (had a deadline that I just wrapped up today).  I'm really glad to hear that you had a good consultation at Stanford.... to travel so far and then to have a so-so experience would have been disappointing.  Sounds like they will take really good care of you.  

My first thought was to have my mom go to MD Anderson, just because we have had good experience there related to my dad.  But it's really valuable to know that we have options at other centers too.  I've forwarded Dr. Pegram's bio to my mom.  I think she's already swayed that someone from New Zealand made the trip to go seem him.  Hope to make a final decision soon.  

Thank you again and take care 'til your next post -- please keep us posted!    
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jessica02 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2013 at 6:35pm
Thank you, Deb!  Is he your oncologist?  

We chose our dad's oncologist based on a rec from another cancer forum, and that choice has turned out to be great so far, so we're grateful to have other people's recommendations.  I've forwarded Dr. Sledge's bio on to my mom.  Thank you!!   
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Post Options Post Options   Thanks (0) Thanks(0)   Quote debB Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2013 at 11:05pm
Hi Jessica,

Dr. Sledge was my oncologist when he was at Indiana University and he left at the end of December to go to Stanford. I miss him terribly and if I ever have a recurrence, I will be on a plane to California in a heartbeat. He is extremely TN knowledgable and is an absolutely wonderful person as well. I hope being at a larger center hasnt changed things for him, but I never, ever felt rushed and he would always sit and discuss anything I had to talk about that day. He never just gave the do it just because answer but would give the research behind the why. I miss him coming in and greeting me with a hug for appointments!

Good luck to your mom, wherever she ends up!
Deb
Dx 4/29/11, 46 yrs old, 3.9 cm tumor, Stg 2 Grade 3 chemo 4 rounds DD AC, 12 weekly taxol, finish. Lumpectomy, 2mm residual tumor. 37 rounds rads completed. Cisplatin/PARP trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jessica02 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2013 at 1:07pm
Thank you, Deb!  Really, really appreciate the input, and I'm sorry to hear that you won't get to see him regularly.  I hope you've been able to find a new oncologist just as good.  He sounds like the kind of oncologist we're looking for.  The choice for us has become tougher now with these suggestions, but that's a good thing. :)  Take care and best wishes to you -- thank you again!       
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2013 at 1:10pm
Dear Deb,

I saw Dr. Sledge a few weeks ago with a patient.

Although head of all oncology at Stanford he is maintaining his breast clinic one day a week.

He remains a marvelous physician/man. As you know, I am a huge fan.

hugs to you,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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