Have to make a decision regarding tamoxifen....any advice?

emstitcher
emstitcher Member Posts: 2
edited March 2014 in Breast Cancer #1
Good morning! I am new to this site, and I think joining was long overdue :)! I am 42, and was diagnosed with DCIS at the age of 36....6 years ago. I had a mastectomy with reconstruction (even though it was early, it was widespread). I recently moved and am seeing a new oncologist, whose opinions are very different from my old one. My old Dr., who specializes in BC, always told me she didn't want to start me on tamoxifen until I was older and my risk was higher. My new one says I should've take it immediately and is now investigating whether or not I should take it right now! I have heard terrible things about being on it, and even though I'll do ANYTHING to prevent going down that road again, it scares me! Over the last 6 years, I went through cancer (I know how lucky I was, so don't think I don't :),then, I finally had the strength to get out of an abusive marriage to a mean, bi-polar man, re- locate with my children....change EVERYTHING in my life, and am now ridiculously happily re-married to an amazing man.

THe thought of doing it now exhausts me...the side effects, etc. I am FINALLY enjoying my sex life...LOL. THe thought of NOT doing it is scary, too. I'd appreciate some advice....thanks so much!

Comments

  • mjjones453
    mjjones453 Member Posts: 155
    #2
    tamoxifen
    Hi emstitcher! were you ER+? I started tamoxifen on May 5th of this year because I was ER+. So far I have not had any of the side affects that we hear about. What I have experienced is some tiredness different from the Radiation tiredness. Tomoxifen is used to help prevent any cancer being fed by your hormones. To me, I would rather take it, and put up with the side affects than risk cancer reoccuring. Just my opinion!
  • pattimc
    pattimc Member Posts: 431
    #3
    I've been on it
    for almost a year. I was ER+ and didn't hesitate taking it. I have not had alot of side effects except the hot flashes. They even seem to be getting somewhat better. A few more aches and pains but that could be from my age!!

    I'll be on it for 4 more years and feel confident that it is just another step to keeping me cancer free!

    Good luck with your decision!

    Patti
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #4
    Just do it!
    I was ER+ and didn't hesitate to take it. I believe that tamoxifen is the main reason that I have survived for so long. My prognosis in 1987, with a large tumor and 4 nodes, was not good. I was offered tamoxifen and took it for 7 years as noone knew how long to keep a patient on back then.

    However, I hesitate to share this as it may not affect you, but tamoxifen did knock out my libido. Fortunately, I am married to a great guy and we talked this out and snuggled a lot.

    I had a recurrence last year and am now on arimidex and doing very well again.
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #5
    Welcome, emsticher
    I'm 41, and was diagnosed last year at 40. My doctor started me on Tamoxifen as I was finishing treatment -- I've never heard of waiting years after treatment to start on it, though I'm by no means any kind of medical expert on the subject! :-)

    I've now been on it for 7 months, and the only side effect I'm having is hot flashes at night. Changing the time of day I take it has helped some with those, and my gynecologist has offered a couple of medications we can try if I decide they're interfering with my sleep too much. I can honestly say I'm not noticing any other side effects.

    You do have to be diligent about having regular checkups with your gynecologist while on Tamoxifen, due to the increased risk of endometrial or uterine cancer; however, my gynecologist really stressed to me that, if this were to happen, it generally announces itself early and loudly (bleeding between periods, sudden heavy bleeding, sudden severe pain, etc.), so just wants me to keep a close eye on my periods. So far, they're still very regular and normal, so no issues there.

    Don't know if any of that is reassuring, but we're glad you're here, and glad to try to answer any of your questions!

    Traci
  • carkris
    carkris Member Posts: 4,553 Member
    #6
    TraciInLA said:

    Welcome, emsticher
    I'm 41, and was diagnosed last year at 40. My doctor started me on Tamoxifen as I was finishing treatment -- I've never heard of waiting years after treatment to start on it, though I'm by no means any kind of medical expert on the subject! :-)

    I've now been on it for 7 months, and the only side effect I'm having is hot flashes at night. Changing the time of day I take it has helped some with those, and my gynecologist has offered a couple of medications we can try if I decide they're interfering with my sleep too much. I can honestly say I'm not noticing any other side effects.

    You do have to be diligent about having regular checkups with your gynecologist while on Tamoxifen, due to the increased risk of endometrial or uterine cancer; however, my gynecologist really stressed to me that, if this were to happen, it generally announces itself early and loudly (bleeding between periods, sudden heavy bleeding, sudden severe pain, etc.), so just wants me to keep a close eye on my periods. So far, they're still very regular and normal, so no issues there.

    Don't know if any of that is reassuring, but we're glad you're here, and glad to try to answer any of your questions!

    Traci

    I had a friend who took it a
    I had a friend who took it a while after her diagnosis as it wasnt really mainstream then. she took it for 5 years and was just happy that her periods were shorter.
    I wa hesitant to start it and so far no real changes. Ihad some nausea so I take it at night. I feel more irritable but that could many reasons. so I pictured myself being kinda PMS x's a million and it hasnt been like that. My rads onc who is very prominent in his field says it is more important than chemo as it is a targeted therapy. And as people here said to me, try it and if you dont like it you can stop or change. I wish I took it as I am ER positive in the other breast (had ductile 16 years ago) maybe it would have made a difference. WHO KNOWS
  • greyhoundluvr
    greyhoundluvr Member Posts: 402
    #7
    Emstitcher -
    I am not on it yet but know that I will be (or one of Tamoxifen's cousin drugs). The way my oncologistexplained it to me is that if you are ER+, the cancer cells feed off the estrogen in your body. If you take one of these drugs, it blocks the cancer cell from ingesting the estrogen so it keeps looking for its "food" supply. Eventually the cancer cell gets worn out from trying to ingest estrogen and dies. That all sounds good to me - dead cancer cells are the best kind. I hate the idea of taking drugs also and tend to be somewhat intolerant of them but this is one that I am sure praying I can take.....
  • emstitcher
    emstitcher Member Posts: 2
    #8
    greyhoundluvr said:

    Emstitcher -
    I am not on it yet but know that I will be (or one of Tamoxifen's cousin drugs). The way my oncologistexplained it to me is that if you are ER+, the cancer cells feed off the estrogen in your body. If you take one of these drugs, it blocks the cancer cell from ingesting the estrogen so it keeps looking for its "food" supply. Eventually the cancer cell gets worn out from trying to ingest estrogen and dies. That all sounds good to me - dead cancer cells are the best kind. I hate the idea of taking drugs also and tend to be somewhat intolerant of them but this is one that I am sure praying I can take.....

    Thanks so much, everyone.
    Thanks so much, everyone. Yes, I was ER+. I think I will give myself 6 mos or so to enjoy my new married bliss :), and then bite the bullet and do it. I definitely don't wanna go down that road again....

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