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Looking For Steve?

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msherer123 View Drop Down
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    Posted: Jan 04 2017 at 3:08pm
I'm looking for a forum member named Steve. We were told you might be able to help. My wife's breast cancer was misdiagnosed as estrogen-positive last spring, and she started on chemo in July. The second round, Taxol, was ineffective, and instead of a lumpectomy, she underwent a bi-lateral mastectomy in mid-December. Pathology revealed that she has TNBC, and she is very concerned that her oncologist (at Virginia Mason, Seattle) isn't equipped to recommend what treatment should come next. She wants a second opinion, and would like to see someone at Seattle Cancer Care Alliance, particularly Julie Gralow, but Gralow doesn't have any openings until April. My wife needs to start radiation this month, and probably should also undergo more chemo, but we want an opinion as to what type of chemo and the timing. Her present oncologist has simply presented her with three possible drugs but no recommendation.

Other than the breast cancer specialists at SCCA (who all seem to be booked months out), do you know of other TNBC oncology specialists in Seattle?

Thanks much.

Mike
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gordon15 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2017 at 5:01pm
http://forum.tnbcfoundation.org/member_profile.asp?PF=1788&FID=1

Username: SagePatientAdvocates (Steve)


Edited by gordon15 - Jan 04 2017 at 5:05pm
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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Katdoll View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Jan 04 2017 at 6:03pm
I am not Steve, but perhaps I have helpful information, as I was treated in Seattle, at SCCA. My medical oncologist at SCCA was Larissa Korde, and I'd highly recommend her, or anyone at SCCA with the appropriate specialty, if you can get in there in time. If that's not possible, consider a provider at Swedish. I've heard great things about Kristine Rinn and Erin Ellis, and they both have impressive credentials. I'll note, however, that often an oncologist will present you with choices and let you decide - but they will explain the pros and cons of each choice. If your provider at VA Mason presented choices with no explanation of the pros and cons of each - that would be really unfortunate, and I would understand why you'd want a second opinion. In my case, my oncologist explained that option 1 had a slightly higher cure rate than Option 2 and was 16 weeks of treatment rather than 12, but also carried a small risk of damage to the heart that Option 2 did not have. I went with Option 1. Let me know if there's any other helpful information I can provide, and if you prefer you can send me a private email on this site. Take care.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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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: Jan 05 2017 at 10:08am
Hi Mike,

thanks for writing...I will send you a PM, in a few hours, with my phone number and should have some time in the afternoon or this evening to try and help..

I am at MD Anderson Cancer Center in Houston helping two people...

Happy New Year to all!!!

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: Jan 05 2017 at 10:09am
Dear Donna,

thanks for the heads-up..

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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SissyD View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SissyD Quote  Post ReplyReply Direct Link To This Post Posted: May 28 2017 at 10:14pm
I am looking for a specialist in East TN. Can anyone recommend how to locate one?
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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: May 29 2017 at 12:32am
Hi Sissy,

I will send you a PM with my contact info and will try to help you.

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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