I was diagnosed in September with Stage 1 , Grade 3 TNBC in my left breast .
I am currently recovering from a Mastectomy with immediate construction. Lymph node tested in surgery was clear .
Currently there are no signs of it having spread
I get my biopsy results tomorrow from surgery . This could change a lot. I know .
I feel really strongly about NOT having chemotherapy.
I am riddled with arthritis currently and I don’t want that to progress by having chemotherapy and I am concerned about life long side affects . I’m also terrified of loosing my hair .
I have used the NHS predict tool and it only makes 2% difference in the results if I have chemotherapy. So in my mind I can’t justify having it .
There are other treatments radiotherapy, immunotherapy which I would feel better in receiving.
Just wondered if anyone else decided against chemotherapy and had other treatments?
Your thoughts ladies would be very much appreciated.
Predict has generalised data and it doesn’t know about any specific risk factors you may have. I suggest talking to the oncologist once you have your pathology data - they will be able to better advise on the risk. I would however caution that chemo is almost always advised for TNBC and they wouldn’t be doing that if it only made a 2% difference in survival. Oncologists seem to not be trusting the latest version of predict.
Immunotheraoy has eligibility criteria applied to it. If you are thinking of Pembrolizumab, you either have to have a larger spread pre-surgery, or be metastatic and have already had chemo. Plus have more than 10% of cells testing positive for PD-L1. And it’s given with chemo anyway.
Treatments are scary, but the time involved is relatively short, and most side effects pass.
It’s probably worth saying I had an 18mm grade 3 TNBC tumour, no lymph node involvement. I had vascular invasion at the tumour site. I had adjuvant chemo and part way through I had a scan for another reason, which found secondary spread to my liver. I went on to have Pembrolizumab (with more chemo) and am now in remission.
I had left breast mastectomy in 2022, with 3 out of 4 lymph nodes removed which were “cancer connected”. I was not offered chemotherapy but instead had 15 rounds of radiotherapy. I was told side effects of chemo would outweigh any benefit .(Should have mentioned at the start of this that I had TNBC). Admittedly I was 82 when I had surgery, but I had no problem with radiotherapy, I wasn’t tired at all, the only difficult bit was having to go every day, but you plan for that. So far I am fine and relieved I did not have to go through chemotherapy. However, I would always take the advice of the doctor and oncologist as they work as a team and are the best people to help you with treatment. All best wishes to you.
Thank you so much for your reply . It has made me feel a lot more positive and eased my fear . Your experience proves chemotherapy for TNBC isn’t always recommended
I’m so glad you got through your treatment ok and you are now well .
I had TNBC and chemo starting 2021 before lumpectomy. No shrinkage as turned out the cancer was in the walls of a cyst (very unusual). I had clear margins though there were live cells in what was removed. Lymph nodes were clear. I had 5 days radiotherapy (15 days condensed).
I had a local recurrence, same side and TNBC, so had mastectomy start of 2023. Oncologist said no more chemo as she had thrown everything at me already.
So it may have been better to have had mastectomy and no chemo at the start but who can say? I was content to go with the advice given by the team. Re hair loss, I tried you tube head wraps but ended up just wearing cotton beanie hats and it grew back Looking back, that was soon over.
I am on drugs for osteoporosis now for a few years.
All best wishes to you
Hi @claire721
Happy Tuesday to you
you’re right chemo isnt for everyone and there are alternative routes out there.
Have you heard of Chris Wark? He made the decision not to have chemo after surgery for bowel cancer. He now has a book called Chris Beat Cancer, is on facebook and he has a program called Square One. Definitely worth a reading
Myself i got chemo first then a double mastectomy, it was after this that i came across Chris.
Hope your recovery is going well and that your results were good
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Looking back, that was soon over.