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No chemo

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URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13724
Printed Date: Sep 28 2021 at 3:30am
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Topic: No chemo
Posted By: smrdmnd
Subject: No chemo
Date Posted: Aug 17 2020 at 7:02pm
Does anyone know the statistics if you don't do chemo and only do radiation?  I am 70 year old and found out I have tnbc and I have stage 2.  Concerned about my other health issues especially me having a pacemaker.  Thanks.



Replies:
Posted By: SagePatientAdvocates
Date Posted: Aug 18 2020 at 12:38am
Dear smrdmnd,

I have come to the conclusion, after being a Patient Advocate for the last 15 years that
your question is almost impossible to answer. Don't get me wrong, it is an important, great question. It is just that everyone is different and what works for one person, often doesn't work for another.

You need a good Breast Medical Oncologist and a good Breast Radiation Oncologist to sit
down with you and try to explain the pros and cons and then keep your fingers crossed that you pick the right one.

I have helped several young women in their 30's like my daughter was, and they had almost identical presentations when first diagnosed with TNBC and half of them had great results and half did not. They all had the same treatment. Why the difference? In 2004 we did not know about molecular testing...Maybe that was it?...They all had TNBC and all were BRCA1 positive, but different alleles...Maybe that was it? So many women with TNBC, including my daughter, have told me how they hated Taxol, and others have told me of the tough times the had with AC. And some women go flying through chemo and others like my daughter suffered through it. And some found XRT to be awful and some did fine. And some hated both ACT and XRT and others did fine.

It seems we all have our own particular set of experiences..

There would have to be a randomized trial with women who have your particular set of circumstances and 1/2 would get chemo and 1/2 radiation therapy. Don't think that trial would accrue very easily.

Sorry, I can't be more helpful. Please try to find the professionals I mentioned above and see what they say. You may have to get second or even third opinions. As the statisticians say the n is important and we all are a n of 1. Even if there was a trial like I suggested and the odds were in favor of chemo, despite your personal issues, it still might not be the best thing for you. Again, sorry to be so unhelpful.  

One more thought..there is a fairly new profession out there called cardio-oncology so maybe add that professional to the list above and between the three of them you can make as knowledgeable a decision as possible. I have seen a lot of TNBC women with heart issues over the years. It's a difficult problem.

with my love to all here,

Steve




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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


Posted By: Cabeseler
Date Posted: Jul 08 2021 at 9:48pm
New to the forum - DX 2/24/21: IDC pT1c pN0, TN  grade 3, 1.5cm, no LVI
3/5/21 CT CAP - no evidence for metastatic disease, bone scan neg
3/12/21 - Lumpectomy with Sentinel LAD - negative margin, negative Sentinel LAD

I didn't talk to a MO until 4/1/21 - recommended adjuvant RTx, already had an appointment scheduled for 4/4.  Recommended adjuvant chemotherapy (ddAC followed by weekly paclitaxel) - I declined.

4/4/21 met with RO and also had 2nd opinion MO - RO discussed radiation options and told me to let him know what I decide after seeing MO.  MO asked why no chemo before surgery and went on to talk about chemo/immunotherapy over the course of 1 yr plus radiation. 

21 radiation (16 whole breast, 5 focused).  Radiation burns required wound care for 3 weeks following. 

I would like to hear from anyone who also said no to chemo - I feel like the lone duck in the pond....  I am also interested in being listed in a database that follows the various treatments....Is anybody out there????




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