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Another new diagnosis

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CharlotteS View Drop Down
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Joined: Feb 19 2021
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    Posted: Feb 20 2021 at 8:17am
 I received my TNBC diagnosis on 1/11/2021.  2.7cm, stage 2A, grade 3, no lymph node involvement.  I am 45.


My mom was BRCA2 positive.  She was diagnosed with breast cancer in 1998 (not TNBC) and ovarian cancer in 2014 and passed away on Christmas Day 2018.


I was tested for BRCA2 6 years ago; results were negative.  With my recent diagnosis, they have rerun the newer, larger genetic panel and I am awaiting results.


The general messaging is that I am high risk, no matter the genetic results.


I was told standard of care in my situation was 4x biweekly AC then 12x weekly Taxol + Carboplatin (for high risk patients) every 3 weeks during the 12 weeks.


I was also told there was a drug trial available to me which would switch the protocols around: Taxol/Carbo first + the study drug administered with the Carboplatin then the AC after.


Surgery would follow both options, likely mastectomy if not bilateral mastectomy.


This second option is the one I chose, with the drug trial.


My first chemo was on 2/4, second on 2/11, and the third should have been this week but the facility was closed due to extreme winter weather conditions here in Texas.


Side effects in general have been manageable so far.  I understand the AC is hard.


My hair started coming out yesterday.  Thatís what led me to this site, albeit indirectly.


I am going to Texas Oncology/Texas Breast Specialists in Bedford, TX.   


MD Anderson is not so very far from me (Houston vs Dallas) but I like the doctors and I feel like I am getting good information and options.


Would you agree?




Edited by CharlotteS - Feb 20 2021 at 8:18am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 21 2021 at 12:11pm
Dear Charlotte,

Welcome to our wonderful TNBC family. I think you will receive caring support here.

I want to extend my condolences regarding the loss of your mom. I am glad that you did not inherit her BRCA2 mutation. But, I agree, it is wise that you are having more extensive genetic testing.

I have helped hundreds of women on this site over the last 12 years as a patient advocate. I am not a medical professional, and I do not give medical advice, but I try to find oncologists who are TNBC savvy. And, depending on circumstances, also try to find supportive care physicians to help people who are affected by treatment side effects. I also may call attention to clinical trials that people may look into.

MD Anderson Cancer Center in Houston is the number one cancer center in the country and I have been referring people there, for various cancers, for the last 16 years. They have a trial called the Artemis trial but I am not sure you qualify as you have already started treatment. 

https://www.mdanderson.org/patients-family/diagnosis-treatment/clinical-trials/clinical-trials-index/clinical-trials-detail.ID2014-0185.html

Regarding hair loss, MD Anderson Cancer Center does talk to patients about using a 
'cold cap.' I have found a mixed response from women regarding using the cold cap.
Many years ago, prior to the cold cap being used, I even had one woman who told me that "if I lose my hair, I will not do chemo." And she didn't, with difficult consequences. 

If you would like I would be happy to speak with you. Please send me a PM and I will invite you to a Zoom call or if you prefer you can write me-

info@sagepatientadvocates.org 

There are no charges. But, again, SAGE/I will not give you medical advice. Also, neither SAGE or I accept monies from doctors/cancer centers for referrals or monies from drug companies etc. I work as CEO of SAGE Patient Advocates, a non-profit, in a volunteer capacity.

Good luck with your treatment.

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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