Diagnosed with triple negative breast cancer

Hi.

I have recently been diagnosed with triple negative breast cancer and am about to embark on a fairly aggressive chemo/immunotherapy treatment plan.  Although the consultant I met with yesterday was lovely, it was a bit doomsday with all the possible side effects.  I'd love to chat with anyone who's been through anything similar?  Current plan is 12 weeks of weekly chemo/immunotherapy sessions followed by sessions every 3 weeks for a further 12 weeks.  All support gratefully received. 

  • "we will be checked more regularly"

    Just so you don't get a nasty surprise, like we did, i think it's better to be made aware of the reality. Other than 1 yearly mammo, you get nothing post treatment. No matter how aggressive it was from stage 1-3.

    My wife was grade 3 (very aggressive), stage 3. It was in her lymphs, and she was a boot up the backside away from being classed as terminal. She was classed as very high risk for reoccurrence for the first years, and not much better the 2nd years. With each passing year the chances become slimmer.

    Anyway, she had a full response to the chemo, clear margins during her lumpectomy (was supposed to be a mastectomy, but to to her response, it was downgraded) and got around 25 doses of radiotherapy. We asked about post scans for the first 5 years because the stories we heard about cancer, these people were monitored closely. Not true with most cancers. No idea why it changed, but it has. Also, no idea if there's a science behind it, or if it's the usual NHS cost cutting exercise. Probably the latter, but it is what it is.

    There's been a fair few folk on here that have been shocked by the lack of after surveillance they received. You're more or less left to your own "at home" checks.

    You won't get told about this either, but it is very common to find new lumps and bumps after surgery and radiotherapy, so don't freak out if you find one or two, but do get them seen to regardless if they pop up. They're more than happy to tell you it's scar tissue, and will give you an ultrasound. I don't think they can give you another mammo until a year out, though.

    To finish this off and to show not everything is doom and gloom, my wife is nearly 2 years out, and she's still fine. She's had one or two scares, but that's all they've been. It's her new normal.

  • Sorry about the bad grammar. I really need to start using glasses when typing.

  • Hi, thanks for that, I new the mammograms we’re yearly but wasn’t sure of anything else. Thanks for the info and glad your wife is clear, fingers crossed for her it stays that way.