Triple negative no chemotherapy?

FormerMember
FormerMember
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Hi,

I’ve recently been diagnosed with tnbc. Ct scans are showing no spread outside of tumour. Tumour is 2.8cm by 2.2cm

i’m currently researching my treatment options and wondered if anyone else had been diagnosed with tnbc and chose not to have chemo? If so can I ask why you decided that please. 

Any help on this subject will be greatly appreciated 

  • I researched it but research shows by refusing chemo you are refusing the treatment that gives you the most chance of recovering and avoiding reaccurrance. I say this because if you have er/pr + cancer they can give you hormone therapy to treat and prevent reaccurrance but tbc there isn’t that option.

    Chemo can shrink the tumour so you can have a smaller operation and prevent spread. The scans don’t show micro metastasis and chemo helps limit this though it doesn’t eliminate that chance. 
    there are studies of tnbc pts survival rates without chemo but they are too old to be considered valid. They also are frightening 

  • I was strongly advised to have adjuvant chemo. I had a smaller tumour than you. It was grade 3 and not in my lymph nodes (the primary did have vascular invasion). I am now metastatic. I probably was metastatic de novo but of course no one knew. I had had lots of concerns about chemo, arguably it made no difference to what happened other than allowing me to find I was metastatic sooner through a bizarre set of circumstances. In the end I took the chemo because the risks were high and I thought I would find it difficult to live with myself if it all went wrong and I had turned it down. 

    My blog goes through some of my earlier thinking, plus the story as it has unfolded. Start with the earliest posts, I am sorry if it’s a tough read for someone newly diagnosed. It’s my story, it won’t necessarily be yours. 
    community.macmillan.org.uk/.../a-trip-with-triple-negative-breast-cancer

  • Can I ask you a personal question? Why this decision? 

  • FormerMember
    FormerMember in reply to Drycider

    At the point of posting I hadn’t decided one way or another. I started doing lots of reading into side effects of treatment and how/what I could do to combat them. I’d ordered wigs, had my eyebrows microbladed with the thought that I’d have chemo along with everything else the doctors told me to have because they’re the experts. But the more I read on chemo and the side effects/risks associated with it the more I began to question if it was right for me.

    I want to be clear, I’m not against chemotherapy, I do however believe that there isn’t one size fits all for successful treatment because if there was we wouldn’t see secondaries or reoccurances after having what would be considered as successful treatment with no evidence of disease afterwards. 

    After reading lots of books, medical journals, looking into pathway blockers, feeding pathways and speaking to my oncologist who tols me by having it I’d give myself 5-8% better odds over the next 5-15 years I decided it wasn’t my journey. 
    I opted for surgery, radiotherapy and other alternative treatments. If my cancer is to come back I’ve made peace with my decision. If I do get cancer again, I’ll look into treatment options, the risks/chances of survival both with or without chemo/other treatment available and make an informed judgement on what I feel is best for me. 
    As I said, my decisions were based on what I read and believed to be right for me. I’d never tell anyone what they’re doing is wrong or that they’re stupid for not following their consultant (I’ve had this said to me) everyone’s journey is unique to them so my only advise to others is research your cancer and treatment options and do what you feel is best for you. 


  • Have you looked at the PREDICT tool ?? It can help calculate your outcomes from each part of treatment, surgery, chemo, radiotherapy.

    My disease free outcome improved by 7% with chemo, even though my TNBC was under 2cm and therefore didn't meet the criteria for pre op chemo.

    Personally I was scared I wouldn't be offered chemo. Because the recurrence rate for triple neg is so rubbish I'm determined to do everything I can to reduce it as much as possible.

    I can accept going through this once but dread it coming back.

    I also worried that if I didn't accept everything how would I feel if I did get a recurrence.

  • Hi

    I wasn’t offered chemo as part of my treatment plan. My biopsies showed DCIS only but high grade so a mastectomy with radiotherapy was decided by my consultant. The post op biopsy showed some micro invasions, the maximum being 3.5mm and although the MDT discussed chemo at that time, they decided the benefits were less than the risks. I have struggled with pain and arm mobility since the surgery last June  so I think it probably was the right decision for me. 

  • This is a good read, I have tnbc. Had dcis  three tumours largest being 14 MM surgeon told me chemo. And radiotherapy. Saw oncologist who got his predict tool out and said I would only benefit 6 per cent if I had chemo. So he said he would go for radiotherapy. Want the best outcome. Not sure if chemo is the best way forward now. Don’t want to be thinking what what if.