Author |
Topic Search Topic Options
|
atlhoosier
Groupie
Joined: Feb 18 2014
Status: Offline
Points: 46
|
Post Options
Thanks(0)
Quote Reply
Topic: 2nd Opinion at Major Institution 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)
|
|
123Donna
Senior Member
Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
|
Post Options
Thanks(0)
Quote Reply
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
|
|
Kellyless
Senior Member
Joined: Jun 18 2009
Location: Dallas, Texas
Status: Offline
Points: 1154
|
Post Options
Thanks(1)
Quote Reply
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 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
|
|
gordon15
Senior Member
Joined: Jun 22 2015
Location: San Diego CA
Status: Offline
Points: 788
|
Post Options
Thanks(0)
Quote Reply
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
|
|
atlhoosier
Groupie
Joined: Feb 18 2014
Status: Offline
Points: 46
|
Post Options
Thanks(1)
Quote Reply
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)
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009
Status: Offline
Points: 4748
|
Post Options
Thanks(0)
Quote Reply
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
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009
Status: Offline
Points: 4748
|
Post Options
Thanks(0)
Quote Reply
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
|
|
123Donna
Senior Member
Joined: Aug 24 2009
Location: St. Louis, MO
Status: Offline
Points: 13509
|
Post Options
Thanks(0)
Quote Reply
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
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009
Status: Offline
Points: 4748
|
Post Options
Thanks(0)
Quote Reply
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
|
|