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InkPetal's avatar
InkPetal
Member
8 years ago

Activity reminder - Can you help?

Hello everyone, just a reminder to occasionally look in on the activity feed for comments from people who would rather not post discussion threads. It doesn't happen often but it's sad to have anyone slip through.

Right now @JoAyers is looking for those experienced with ER+ triple negative.
She's had another tumor occur despite a double mastectomy.
Would really appreciate comments from anyone who can relate and offer her some knowledgable support. :heart:

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  • melclarity's avatar
    melclarity
    Member
    8 years ago
    @JoAyers So you had a tumor come back after a double mastectomy and recon? I had DCIS left breast in 2011, aggressive treatment, lumpectomy clear margins, radiotherapy and tamoxifen 4yrs. I then had a recurrence in the same breast same spot!!!! 2.5cm tumor ER+ only, grade 3 stage 2. I had no choice but chemo and couldnt do rads again so now am on Aromasin. 1yr post treatment as recommended by my Specialists I had a single mastectomy/diep flap recon in late Feb this year. I was told also my recurrence was so incredibly rare, lucky me! and so I now only have to have a mammo/scans on my right. I had genetic testing and am negative. I think as you are triple negative they want to jump on treatment aggressively. Hugs Melinda xo
  • Zoffiel's avatar
    Zoffiel
    Member
    8 years ago

    Hi @Joayers I had a local recurrence (in my armpit FFS) last year. I'd had a double Mx and AC chemo in 2006 so also thought I'd skated and was in the clear.

    My cancer is not the same as yours, but I was thrown back in the mincer--surgery, chemo and rads. Its a tough decision to make, particularly the chemo which, in my case, was estimated at improving my chances of long term survival by about 7%.

    The problem arises when the numbers don't seem to add up and the recommended treatment seems over the top. I wanted chemo like I wanted anthrax and was intending to refuse until my partner and family got in on the act. The pressure to  proceed was relentless. I had a seroma after surgery which delayed chemo by 10 weeks so there was plenty of time for them to work on me.

    Was it good advice, I still don't know. Go with your gut if you can. Good luck, Marg xx

  • primek's avatar
    primek
    Member
    8 years ago
    @sillysam83 You might be able to throw some light into recurrence after mastectomy.

    @melclarity I'm sure your experience will help.
    Kath x
  • primek's avatar
    primek
    Member
    8 years ago
    Here is the post.
    @JoAyers

    Hi Everyone. I have been doing everything possible to recover from my Cancer. 16 months on from my last Lump that was Est+. I have found another one in the same side that is triple negative. I have surgery on Monday 17rh Oct followed by Chemo and maybe Radiation after that. I would like to talk to someone who has had the same cancer , as from what I have read it is more aggressive. 
    in 2015 I had a large amount of DCIS in the right breast. It was taken out but margins weren't enough so I opted for a double mastectomy and recon. Got through that and 12 months later in May 16 I found lump in the same breast at 6 o'clock and that turned out to be a little tumor. I thought I had it undercontrol. But not to be. I'm now having the book thrown at me. They say I'm in the 1-2%. Is there anyone else out here that's been down this road and ended up with a triple negative Tumor?  Ta