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Scared and Confused - Birthday present: TNBC

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Category: TNBC Forums
Forum Name: Welcome New Members
Forum Description: A place to introduce yourself to our community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13888
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Topic: Scared and Confused - Birthday present: TNBC

Posted By: kayce
Subject: Scared and Confused - Birthday present: TNBC
Date Posted: Oct 04 2023 at 4:27pm

I've been searching everywhere to find a peer to peer group, to maybe find someone who has been diagnosed with my same form of breast cancer as I figure out what treatment path to take.

I was diagnosed with TNBC on September 18th. I have since been on a whirlwind ride of getting doctors to respond etc. Here are my details:

I'm 56
BRAC2+ (found out four years ago, no option for surgery, COVID times)
Been doing MRI's every year since
Routine MAMMO and MRI - last year clear, this year 3CM area (not mass) in left breast
I'm Stage II - all CT scans and bonescans show no metastasis
It seems to be contained
I have already requested a double mastectomy flat, no reconstruction
The oncologist hit me with - 5 months of an alphabet soup of chemo and immuotherapy - 12 weeks of once a week and then 2 months of every three weeks, then wait, do the surgery and then possibly more chemo.
I asked them if I could get the surgery first and then the chemo as it seems logical with the side effects that I would be stronger and less likely to get any sort of infection etc before the chemo kills everything in my body and then to do the chemo.
Well they came back at me with "standard of care" etc.
I asked if this was based on an average of "all" types of TNBC including patients that were opting for a single mastectomy or lumpectomy etc. And they said yes.
I asked what about for someone who wants them gone, and with everything being contained, would it not make sense to do the surgery first and then the chemo four weeks after? That would still be within the 120 day window of diagnosis to chemo recommendations?
They are continually telling me that this is the standard of treatment.

Is there anyone here that can reach out to me that may have had this exact diagnosis and let me know what you chose and share your story? I am still so confused and not convinced chemo before is the right thing?

Replies:

Posted By: cookie54
Date Posted: Oct 04 2023 at 10:50pm

kayce, Sorry you find yourself here dealing with TNBC. The standard of care with your situation having treatment first does make sense. When treatment is done first they are able to see if your cancer responded to treatment which is very important. When you have treatment first then surgery if there is still cancer present you have additional treatment after also.

I have experienced both situations, first diagnosis adjuvant treatment then recurrence 4 years later and neoadjuvant treatment. With the recurrence ( axillary nodes) had treatment first but still had cancer present at surgery. I then took oral chemo after surgery to help reduce the risk of another recurrence. So there is a method to their madness for sure! I know sometimes things don't seem logical to us but this definitely is.

TNBC does respond pretty well to treatment but it is important to hit it hard so you never have to deal with it again!

Sending you good vibes, strength and support.

-------------
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,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
Xeloda2/21
Stage IV 6/22 lung mets

Posted By: kayce
Date Posted: Oct 05 2023 at 8:54am

Thank you so much Cookie for your response, quick question...did you get a double mastectomy flat? Or what kind of surgery did you get with the adjuvant route?

Posted By: cookie54
Date Posted: Oct 05 2023 at 10:53am

Your welcome! So initial diagnosis 2016 Bilat mastectomy, expanders in then implants. In 2020 I had a lymph node dissection 8 nodes removed in axilla 5 still had cancer after treatment. Even though you don't have distant metastasis now sometimes after surgery they find traces of cancer in the axillary nodes. So that's another reason treatment first with your size cancer is important. Cancer can be a tricky bugger!

-------------
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,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
Xeloda2/21
Stage IV 6/22 lung mets

Posted By: Kari Lyn O
Date Posted: Jan 04 2024 at 3:49pm

I am hoping that things are going well for your treatment! I was diagnosed with TNBC in my left breast that went into my lymph nodes and her 2 positive in my right. I did the treatment regimen you discussed and was very scared, too! I completed the first twelve cycles of abraxane, as I had a taxol reaction the first time. Then I also had carboplatin for 8 cycles until the platin salts built up in my body causing hospitalization. I was then given 2 rounds of A/C that had to stop due to sinusitis complications and sickness caused by neutropenia. I’m letting you know all of this because even with my set backs, I was called today after my double mastectomy on December 28th and my pathology came back cancer free!!! You got this!!!🥰