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2nd Opinion at Major Institution

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atlhoosier View Drop Down
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    Posted: Sep 15 2017 at 10:42am
I want to get a second opinion at one of the big institutions.  I am considering either Mayo in JAX, or MD Anderson in Houston.  I have mets to lung & sacrum, although the lung is a single nodule.  Wanted to hear opinions on the 2 of these hospitals.  Is one better than the other for TNBC, or even metastatic TNBC?  If you are being seen at either of these 2 places, who is your doctor?  Thanks!
DX Jan 2014, 37yo
TNBC, Stage 2A, 4 tumors, BMX Aug 2014, clear margins

2017 - Mets to lung (single nodule) & sacrum
1st line(current): clinical study w/ taxol & reparixin (may be placebo)
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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 15 2017 at 11:31am
When I had my recurrence I had a 2nd opinion at MD Anderson in Houston and a 3rd opinion at Siteman Cancer Center in St. Louis.  Personally, I highly recommend second opinions at a National Cancer Center.

Can you reach out to Steve?  He's a patient advocate and has helped many of us.  He has more experience with the different cancer centers than most of us.  He helped me when I was trying to get an appointment at MD Anderson.  You could send him a private message.   His user name is SagePatientAdvocates.  

Donna
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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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Sep 16 2017 at 2:08pm
When I had my recurrence last year Steve (my guardian angel ) helped me get into MD Anderson for a second opinion. My husband and I couldn't have been more impressed with every aspect of MDA. The whole place runs like a well oiled, professional machine. It is huge, yet you always feel important as the patient as well as the caregiver. They are there to treat cancer - period - it gave me peace of mind having them on my team. And it changed my treatment plan, which led to a complete response to chemo. If I ultimately survive this recurrence this second opinion saved my life. My treating hospital is an NCI rated facility as well (UTSW) but I feel a second opinion is always a good idea!
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2017 at 8:01pm
My wife is seeing doctors at UCSanDiego/Moores, (https://providers.ucsd.edu/details/22465/razelle-kurzrock-cancer-la_jolla ) and her oncologist is nearby at Scripps, La Jolla, California, his name is James Sinclair, he specializes in breast cancer and his partner in all types...

"Steve " here on this board encouraged us to see Dr. Kurzrock, per my telephone conversation here in San Diego, and she is basically, my wife's last hope...


Edited by gordon15 - Sep 19 2017 at 6:04pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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atlhoosier View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote atlhoosier Quote  Post ReplyReply Direct Link To This Post Posted: Sep 17 2017 at 11:46pm
Thank you! I will see if I can get in touch with Steve for help.
DX Jan 2014, 37yo
TNBC, Stage 2A, 4 tumors, BMX Aug 2014, clear margins

2017 - Mets to lung (single nodule) & sacrum
1st line(current): clinical study w/ taxol & reparixin (may be placebo)
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2017 at 8:26pm
Dear althoosier,

I have had an extremely intense couple of months and unfortunately did not see your post until today. 

I am sending you my contact info in a PM with my apologies for not seeing your message sooner. 

If I can still be of use I would very much like to...Please call me.

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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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2017 at 8:38pm
Dear althoosier,

I just tried to send a PM and it was bounced back that althoosier is not a good name..

Donna, maybe you have some way to get in touch? Please feel free to give her my contact info..just saw your PM for the first time today, too. Thanks for sending...

warmly,

Steve

Edited by SagePatientAdvocates - Oct 25 2017 at 8:39pm
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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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: Oct 25 2017 at 11:07pm
Steve,

I sent her a PM.  I'll let you know if I hear from her.  

I think you tried the wrong member name.  It's "atlhoosier".

Hope you are doing well.  You sound exhausted my friend.

Hugs,
Donna
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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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2017 at 11:21pm
I will correct and re-send...

Just so you know I spoke to the son of the woman with IBC and I am trying to help. Please keep alerting me...

I have been intensely busy so rarely look at the boards so your help is really important and very much appreciated. Thank you.

Also, as an example, people on the TNBC board don't realize how many women I am actively helping from the board because I never mention it. As an example I am helping a woman now and have gone to multiple cancer centers with her and her husband in the last two months. But no one is aware. 

I hope you are well.

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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