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Alsopt's avatar
Alsopt
Member
7 years ago

Reoccurance 3 years later

hi all haven't been on here for a while was trying to get to some normality after first diagnosis, mascetomy, expander, chemo, radio and then exchange in 2015 - late 2016.  Had lots of side effects which ultimately left me having to leave work lots of lovely neuropathy,  chronic fatigue,  loss of most use of left arm bla bla bla.  I was shocked when at my recent 6 month scan they found new gr 1 this time small cancer estrogen pos.  I stupidly stopped Femara after 8 weeks the first time.  I had surgery a month ago same bloody side - unusual spot about 3 cm from implant more toward under my arm ( who knew that was even breast tissue?). So I've been a bit down relieved ( if you could say that - that it was lower grade and no chemo again nore radio). But now it's imperative I try something else this time Armidex - brought packet this morning I'm still looking at it.  Anyhow it's strange 2nd time around I don't think I've come to terms with having reoccurrence well that's it.  I'd love to hear any positive stories on armidex of course being a google fanatic i looked up negative first - I'm hesitant because of the osteo but realise I've got to try something 

9 Replies

  • Brenda5's avatar
    Brenda5
    Member
    7 years ago
    Reminds me of a game of snakes and ladders and you hit a snake Alsopt. Never mind, you've got this. At least they found it nice and early. Hugz <3
  • Alsopt's avatar
    Alsopt
    Member
    7 years ago
    Zoffiel thank you I'm sorry your going through this as well hugs 
  • Zoffiel's avatar
    Zoffiel
    Member
    7 years ago

    I had a recurrence after ten years even after a double mastectomy chemo and 5 years of Tamoxifen. It's not a situation any of us want to have to deal with. Mine had progressed to the point I had to have chemo and rads, an oophorectomy and I'm now 18 months into AI treatment. I started on Letrazole and changed to Anastrazole 6 months ago. I wish I could tell you it's been uneventful, but there are certainly reasons there are so many negative reports about hormone treatment.

    Regardless of how unpleasant AI can be, it beats the hell out of the alternatives--as you and I know from first hand experience. Unfortunately there are no guarantees that any treatment works, but if AI is the only option there is little choice except to take them. I'm having a month break at the moment to try to determine if the aromatase inhibitors are behind all the aches and pains, fatigue and brain fog or if the other treatment has caused irreversible damage. Even if they are the culprit, I'll still have to bite the bullet and resume taking them. Hang in there, you just have to do the best you can. Marg xxx

  • Barney74's avatar
    Barney74
    Member
    7 years ago
    Im so sorry to hear 
    I hope you have a great loving support around you x
  • Jane_Elizabeth's avatar
    Jane_Elizabeth
    Member
    7 years ago
    Hi @Alsopt, very sorry to hear about your recurrence. I was on Letrozole (femara) for about a year then swapped to anastrozole (arimidex) in April this year because of aching joints. Anastrozole has suited me much better, and the aches have really diminished (though not completely). I haven't noticed any other side effects, though my cholesterol is up. Not sure if that is because of the medication (it can be a side effect, but mine was creeping up pre cancer anyway).
    It seems to be a very individual thing how people react to the meds. In the big scheme of things, my side effects are extremely minimal and do not impact day to day life to any great extent. Good luck with your decision.
    I hope you don't mind me asking, but was the recurrence on the mastectomy side? When I asked my surgeon whether I still had breast tissue on the mastectomy side, she said no. (I also had axillary clearance). I have always wondered how they know whether all the breast tissue has been removed.
    X
  • primek's avatar
    primek
    Member
    7 years ago
    Oh bugger bugger bugger. The oateo if an issue can be treated. Better to be here on prolia than not I say. Hopefully you will fibd something that suits. So sorry you're on this darn train again. 
    I don't even gave scans on my mastectomy reconstructed breasts as not recommended but do have physical exams 6 monthly shared between breast surgeon and oncologist.
  • TonyaM's avatar
    TonyaM
    Member
    7 years ago
    Hi Alsopt, what a pain to get bc again after all you’ve been through.I had my first bc in 2003(lumpectomy,full node clearance and radiation)I didn’t follow through with Tamoxifen and 7 yrs later it came back in the same breast. This time it was a mastectomy and chemo and then Tamoxifen.That was 8 yrs ago and I’ve been fine.I was angry when bc came back a second time- I couldn’t believe it.It was supposedly an 8% chance but I really think it’s a lot higher because I’ve heard of so many women getting it again after a lumpectomy.I coped with Tamoxifen for 4 yrs and then stopped because of health issues with it.I’ve thought of recon but interestingly,my onco prefers me to wait till the 10 yr mark.I’m sorry you have to face bc again and it may have happened regardless whether you took Femara or not.It’s the luck of the draw. You may tolerate Arimadex better- you can only try.I tolerated Tamoxifen better the second time- go figure.
    Best wishes.