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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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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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ChiLW View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ChiLW Quote  Post ReplyReply Direct Link To This Post Posted: May 16 2021 at 1:17am
Hi. I am grateful to have stumbled upon this website while searching for information about treatment for mTNBC, and this is my first post. My question is: Has anyone with mTNBC been treated with Xeloda (capecitabine) as the FIRST line of chemo, and what kind of results have you had? 

In 1999, I was diagnosed with Stage 1 ER+, HER2- BC, sentinel node-; had mastectomy with latissmus flap reconstruction and tamoxifen x 5 years. No chemo or radiation recommended. After 10 years, I was told I was ďcured.Ē I had yearly mammograms on the other breast, but was told there was no protocol for monitoring the reconstructed side.

This Jan 2021, as I happily settled into retirement, I developed odd skin nodules on my chest and above my collar bone, and immediately had the sinking feeling that they were metastatic BC. (My original oncologist had warned me to watch for rashes/ skin lesions on my chest.) Punch biopsies confirmed they were. Bone scan, ultrasound, MRI, CT, and PET scans followed, and showed 0.8cm mass in the reconstruction and multiple enlarged axillary lymph nodes, which were biopsied and confirmed to be BC. Markers are now TN, and I was told the markers can change from the original cancer. Multiple, small, nodules in my lungs were also seen, which were called ďsuspicious,Ē but indeterminate if metastatic disease. 

Iím told my presentation is extremely rare. Itís unclear if the tumor in the reconstruction is from residual cancer cells, or if I developed a new cancer in breast tissue left, despite my mastectomy. In any case, the skin lesions are considered to be distant metastasis (as well as the possible lung nodules), so I now have Stage 4 BC. Needless to say, after 21 years, and thinking that I was home free, I am devastated!

No surgery is being recommended to remove the tumor in my reconstruction or the positive lymph nodes. The skin nodules will be removed, at my request. The surgeon says surgery will not improve outcome, and systemic treatment is needed. Radiation is not being recommended, and my immune markers indicate immunotherapy would not be useful. My oncologist wants to prescribe Xeloda. The information that Iíve found talks about Xeloda AFTER traditional IV chemo has failed, and Iíve found nothing about using it as a first-line chemo. I want to be as aggressive with treatment as soon as I possibly can, and wonder if oral chemo will be as beneficial as the IV chemo... Iím also anxious because the work-up has taken so long, and I want to start treatment, but I want to make sure all treatment options are considered, and that I get the best chance for remission. 

I would appreciate hearing about anyoneís experience with Xeloda, mTNBC involving chest skin lesions, or any other input. Thanks.
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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 16 2021 at 11:10am
Dear ChiLW,

Welcome to our TNBC Foundation family,

I am not a medical professional and will not give you medical advice but I feel it may be important for you to see an expert in Inflammatory Breast Cancer (IBC) based on what you have said in your post. I can help you secure a consult with an IBC expert, if you wish and there are no charges for my services or SAGE Patient Advocates's.

I started an Inflammatory Breast Cancer forum as part of this forum in 2012.

https://forum.tnbcfoundation.org/inflammatory-breast-cancer-a-new-forum_topic10484.html

For some reason (perhaps because it is such a rare breast cancer-2% of all cancers diagnosed each year) it is often, from my experience misdiagnosed. 

Please feel free to contact me (even today) at-

info@sagepatientadvocates.org or send me a PM (Private Message) and give me your email and we can do a Zoom this afternoon if convenient form you. 

Before you have surgery to "remove your skin nodules at my request" I suggest you see an IBC expert. If it is determined that you have IBC (which is a clinical diagnosis...so the IBC expert will want to see you in person, in clinic) it is my unprofessional understanding that surgery is not the first choice for treating IBC, chemo is.

I can't comment on whether Xeloda is proper treatment. Maybe others here can offer their experiences.

IBC is an extremely difficult breast cancer to treat. I am not saying you have it but I suggest you make sure it is ruled out or confirmed by an IBC expert. 

For some unknown reason when women have IBC, 70% of the time they have TNBC. The converse is not true. If you have TNBC it does not mean that 70% of the time you have IBC.

Sorry you are dealing with mTNBC. Thanks for posting.

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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CMDW View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMDW Quote  Post ReplyReply Direct Link To This Post Posted: May 17 2021 at 10:16pm
As a fellow TNBC patient, I can only say that I would get a second opinion from an oncologist very familiar with this type of breast cancer.  I have only heard of Xeloda being used after all other treatment is complete (chemo, radiation and surgery when warranted) and most often if there is not a complete pathological response.

I am sorry you are faced with this.  Best wishes, Cindy
66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO
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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: May 17 2021 at 10:38pm
I have a similar situation nodule under and thru skin on top of my breast implant. My Dr still considers me stage 3 local recurrence. My dr along with second opinion agreed upon gemzar and carboplatin followed by radiation as I did not have radiation the first time (bilateral mx, no nodes, clear margins). My Dr did mention me possibly taking Xeloda after radiation.  
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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: May 18 2021 at 7:10pm
I too had a local/regional stage 3 recurrence in my axilla and chest wall. I had neoadjuvant carbo/gem and also keytruda, then axillary lymph node dissection followed by
radiation. Unfortunately I did not  have pcr so I am now on Xeloda. My understanding is Xeloda is typically not used as a first line treatment. Best of luck to you!
8/2016,IDC,StageIA, Gr3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX implants,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca, surg
Xeloda2/21,8rnds


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ChiLW View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ChiLW Quote  Post ReplyReply Direct Link To This Post Posted: May 21 2021 at 9:42pm
Thanks to all. Busy week for me. I had a 2nd opinion; mTNBC, Stage 4 confirmed. Skin nodules removed. The oncologist that I saw for consultation agreed Xeloda was ďreasonableĒ but felt it might be better to start with one of the taxanes, and he called my oncologist to discuss. She now recommends Abraxane, which Iíll start in two weeks, when healed from the surgery. I appreciate everyoneís comments. Wishing the best to everyone.
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