Triple Negative Breast Cancer

1 minute read time.

well today the breast nurse rang me, was getting uppity because i had turned chemo down, then out of the blue she declares that i have 'triple negative' breast cancer, i have never heard this term before, and after research it changes it all around and dumps it all on its head. when i look up tripe neg breast cancer its not good, its aggressive, normally comes back, often in the brain! its aggressive and also more than likely genetic, well i have my gene resutls and i dont have the BRAC 1 or 2 mutation, so now i am thinking perhaps i should have chemo....but she said i am at a 30% risk of it coming back with the chemo and and a 20% risk if i have it, hoewver if you google tripe neg it says its a high risk of it coming back, nearly all cases get it back, its a new thing they have found, that normal chemo doesnt work on it!!!! why didnt they tell me this before - i feel i have no choice now but to take chemo, i dont want it, but i think the risk of a re-run of the cancer is too high not to ......damn!

anyone else out there in my place, would love to chat to other triple neg people

Anonymous
  • FormerMember
    FormerMember

    hi wendy,

    i am triple neg too and have had 4xEC and 4x docetaxel chemotherapy, plus mastectomy. I am waiting for results of yet more biopsys to see if i need more nodes removed. Im certainly glad i had the chemo as this dreadful disease takes no prisoners, id not forgive myself if i didnt take what they offer me to fight it. i have seen a fair few ladies on the BCC site who are triple neg and quite a few years down the line with no reoccurance. Its worth looking at the triple neg info there as it does give you hope.

    good luck and take care

    anna

  • FormerMember
    FormerMember

    Cant offer any advice on triple neg but thinking of you.

    Maggsxx

  • FormerMember
    FormerMember

    Hi Wendy

    I'm so sorry to hear not just your news but how you received it, you really should have been given all the facts before.

    I also turned down chemo but my breast cancer tested 100% estrogen positive so I at least have the backup of hormone treatment.

    Not much help to you I know but will be thinking of you

    Helen

  • FormerMember
    FormerMember

    I am triple negative , I've had left breasts mastectomy and reconstruction, Basildon hospital casually offered chemo "if I would like" see how it goes " I decided to transfer to Broomfield as I was very please with my care  I have had 3 FEC and 2 Tax (one more to go ) I have been offered radiotherapy . I want to hit this sneaky disease with everything that I can because I want to live !! What worries me is that if I had listen to Basildon and not gone ahead with treatment where would I be !!!

    It seems you can't always rely on the professionals to give you the information about your condition.

  • Hi Wendy, I too am Triple Negative. I was told at diagnosis stage and also had Genetic testing. Thankfully that was negative however having not understood, I put it firmly to the back of my mind and was only reminded if it this week as I approach the end of 6 months chemo and we now have the discussion about ongoing treatment. I've had 3 months of EC followed by 3 months of Paclitaxel (EC was easier overall for me because I could recover between each treatment.  Weekly Paclitaxel has been hard and I've had every side effect known to man. Latest is a painful red rash (like the worst kind of sunburn) on my hands. What with that  the baldy head, no eyelashes and numb toes I am not feeling my best! However having said that and weighing it all up, I would do it again. At the end of the day, this has been 1 year out of my life and yes although I'll likely have 6 monthly injections of Biphosphantes to get through, if all of that gives me a better chance of it not coming back, then I'll take it. I'm just not ready yet to go. Obvs I cant tell you what to do only you can do that but I am thinking of you. Hugs x