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Chest wall recurrence

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Noahmom View Drop Down
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    Posted: Jan 23 2021 at 8:47pm
I have a chest wall recurrence. I am just about 2 years out from my original dx. Seeking any advice or suggestions for tnbc specialist in the Nashville Tn area. I was originally stage 1 no node involvement. I had a bilateral mx with act after. Obviously the act didnít work for me.
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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: Jan 23 2021 at 10:28pm
Hi Noahmom,

Iím so sorry you are dealing with a recurrence.  There is a TNBC specialist, Dr. Ingrid Mayer, at Vanderbilt.  There have been many members who have seen or been treated by her.  Hopefully they will see your post and offer their experience.


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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cheeks View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2021 at 11:27pm
I would also recommend Dr Mayer. Sheís been my doctor since 2012 for followup after my first TN and continues since my new primary in 2018. I love the womenís center at 100 oaks where Iíve seen her, had all my tests, blood work, chemo.... everything but actual surgery. I was just there this week. 

Blair
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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Noahmom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Noahmom Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2021 at 7:33am
Thank you both for the quick response!  I just had a clear scan in November, so i thought I was all clear.  My original cancer wasnít detected by a mammogram 3 months prior to me finding the lump. Now, my lump wasnít caught on a ct from 2 months ago.  At this point, I donít feel like I can trust any imaging.  So scary!
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cheeks View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2021 at 9:01am
I understand your feelings. In 2018, my microcalcifications were seen on mammo and MRI with and without contrast. What wasnít seen was a second 4cm tumor. My cousin, a radiologist at Mayo, had also reviewed my scan and didnít see it either. 

Iím wishing you the very best and very sorry youíre having to go through this again. 

Blair


Edited by cheeks - Jan 24 2021 at 9:05am
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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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 24 2021 at 11:52am
Dear Noahmom,

Sorry to hear about your chest wall recurrence. 

I have a very close relationship with a Breast Medical Oncologist at Vanderbilt in Nashville who is knowledgeable about TNBC. I can, hopefully, get you a consult sooner than later. 

Please send me a PM with your email and we can have a Zoom today. I prefer to try to 'meet' you via Zoom but happy to do a phone call (will send you my phone number) if that is your first cholce. 

If you would prefer to send me an email please do so to

info@sagepatientadvocates.org

I am on a Zoom in ten minutes for an hour. Happy to speak to you today or next week.

I am not a medical professional, and will not give you medical advice, but can be helpful in getting a consult for 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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Dasiy3333 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Dasiy3333 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 12 2021 at 5:37pm
hi I saw you post - I got the same news as you- I was dx with TNBC Aug 2016 and had reconstructive surgery on January 20th and they sent fat necrosis to pathology and TNBC was found. 
I had MRI, Petscan, Ultrasound and having biopsies on Monday. It is looking like it is in the soft tissue In My chest wall despite having a DOUBLE MASTECTOMY and ACT. I am following your journey - I am looking into Mistletoe therapy. I have to see if I will be eligible for Immunotherapy. 
Please let me know if you find any resources and I will let you know as well. I am in Baltimore, MD 
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