Tamoxifen - huh?

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  • kris30
    kris30 Member Posts: 7
    edited June 2009

    Hi ladies,

     My Mum has recently had a lump removed from her breast. It was a grade 1 tubular and either 5 or 8mm - I forget.  So the other tests have all come back clear, lymphs are clear.  She will be starting a course of radiotherapy soon.

    But today her Dr spoke to her about Tamoxifen - it was all a bit much for her to take in so she asked to go away and think about it.  She doesn't really like the idea of being on meds like that for 5 years and the fact that it will only work on where the cancer was before so won't prevent cancer forming elsewhere in her breasts.

    Can anyone enlighten me a bit about this so I can help her with her decision?  I have read a bit on it and don't like the potential side effects of other forms of cancer, etc from taking this.

    Thanks!

  • idaho
    idaho Member Posts: 1,187
    edited June 2009

    Tamoxifen doesn't just stop cancer from growing at primary sight, it blocks estrogen (I am assuming her cancer is estrogen fed)- and stops cancer from growing in your whole body.  There are some side effects, but many women have them and handle them just fine- I am one of them. It is all overwhelming- my doc recommended that I do radiation and then start tamox- one thing at a time... I have been taking tamox and doing fine.  I think she should at least try it, if she can't handle the se's then she can always quit.  Peace to you, Tami

  • mtaylor
    mtaylor Member Posts: 6
    edited June 2009

    Hi kris30,

    I started on tamoxifen last July, I will take it for 5 years as well.  The worst side effect I'm having is the sweating, it's overwhelming at times and often noticible to others.  Another side effect is discharge but that doesn't seem to be a big problem for me.  The chemo put me through early menopause and I understand that as long as I'm on this medication I will not get my cycle back, that's a good thing!!!  There is a risk of developing uterine cancer while taking this medication just so you know.  Good luck to your mom and family!!

  • kris30
    kris30 Member Posts: 7
    edited June 2009

    Thanks ladies.

    You've both been really helpful!

     Kristie

  • cookymkr
    cookymkr Member Posts: 82
    edited June 2009

    I've been taking Tamoxifen since February 2009. So far I haven't really noticed any side effects. I do get hot on occasion, but heck I did that before all of this started! I will take the Tamoxifen for the next 5 years. I'm very glad that medicine has made the advancements that it has over the past 30 years to give us a fair and fighting chance!

  • homealone
    homealone Member Posts: 38
    edited June 2009

    I took Tamoxifen for 5years and the only problem I experienced was difficulty in getting off to sleep.I could always sleep when it was time to get up.I am post menopausal so did not get any of the hot flashes.Unfortunately when I had my 5 year mammogram another cancer was found in my other breast,so this Wednesday I am having a bilateral mastectomy.This tumour is only slightly ER+ so did the Tamoxifen work for me ,who knows.One could argue that I did not get another cancer for five years on the other hand one could say it didn't work,but at least I gave it a shot,and really had no side effects from taking it.My advice ,you have nothing to lose and maybe a lot to gain.

  • jeril12
    jeril12 Member Posts: 17
    edited June 2009

    You might ask your doctor to use one of the newer drugs, the side effects can be worse or none, but it will be less time on meds...

    If she does 5 yrs on Tamox, she will have to another 5 yrs on another of the new drugs. Ask your doctor for options.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    I finished my 5 years of tamoxifen last fall--my SEs were minimal, mainly hot flashes which were annoying, but manageable. My mom took it and is now a survivor of over 22 years without a recurrence.

    Anne

  • Harley44
    Harley44 Member Posts: 5,446
    edited June 2009

    I'm taking Tamoxifen.  My onc. wants me to take it two years, and then he wants me to switch to an AI...   In December, it will be two years.  I'm counting now... I have about 175 more Tamoxifen pills to take!  

    Good luck to you,

    Harley

  • Leia
    Leia Member Posts: 265
    edited June 2009

    I had IDC, 2cm, Stage 1, Grade 1, 0/3 nodes, ER+PR+ HER2-, and my oncologist told me, the Tamoxifen/AI Inhibitors will do nothing, for you.

    But primarily, because I blew off, the Whole Breast Radiation.

    According to the Breast Medical Industrial Complex the "Big Guns" are in the Whole Breast Radiation. Because according to their stats, if you have the Whole Breast Radiation you have a 40% lesser chance, of recurrence. Well, that's what I was told. I found, other studies, that said WAY less, but we're talking about the "standard of care."

    And so, since I blew that off, my oncologist said, don't even bother. It's not worth the side effects. Some 5% better off, no recurrence.  

    That's the bottom line, for me. In reference to the "standard of care," I was willing to risk a 40% chance of recurrence. By refusing the Whole Breast Radiation. So what is this ... "other" 5%. It was nothing, to me. Or to my oncologist. 

    Smart Lady.  

    Of course, I'm alone, here. EVERYONE on this board gets ALL of these treatments.  Which I don't get, at all. I don't understand it.

    Although, I think maybe it's because I already had that other cancer. The Leiomyosarcoma.  It seems, here, that women think that if they do their ALL to prevent breast cancer, they will live, forever. And suffer ANYTHING, for ANY breast cancer treatment. Even when the up side is 5%, as it is with the Tamoxifen. 

    When the fact is, you could get ANY other cancer at ANY time. On another thread on this board, I talked about a colleagues wife where I work that just died of Leiomyosarcoma, at the age of 42. And another woman, associated with my workplace, now recovering from throat cancer. Non-smoker.  Age 54. 

    I realize that this is a breast cancer discussion board, yet that provides the wonder, to me. WHY are you all so OBSESSED about breast cancer? And I mean, you women, with the Stage 1 and Stage O breast cancers?

    The women with stage 2-4 cancers. They have REAL CONCERNS. Those others, including me, do NOT.

    Maybe this is just a new thread on some other board.  Or the moderators should just delete it, altogether. 

    I had a really nothing, breast cancer. Hello, 2cm is LESS than 1/2 inch. And I have 36DD breasts. And that cancer was cut out, with huge margins.

    Sorry, I'm done. With the Breast Medical Industrial Complex. I don't need their "other" treatments, that just have their own side effects. 

    And especially when I know that the body organs where I can get cancer, is endless.

    This "breast cancer industry" boggles, my mind. I really don't even get it.  

    I've taken other steps, for myself. And if you're interested you can read all about those on the Alternative thread on this board.  

    Budwig Diet/Flax Oil are in the subject header.  

    The Best of Luck, to all of you.  

  • janey47
    janey47 Member Posts: 72
    edited July 2009

    Kris30 -- I too had tubular carcinoma and just yesterday, I declined tamoxifen.  Tubular carcinoma is an unusual form of IDC that has a really really great prognosis -- almost 100% survival at 10 years.  When I discussed hormonal therapy (tamoxifen) with my medical oncologist, I asked her specifically what the possibility of recurrence is without the drug and asked her to compare it to the possibility of uterine cancer caused by the drug.  They're roughly equal.  Of course, everyone is different, and everyone's risk aversion is different, and there are no guarantees of anything, but her take on the issue was that the tamoxifen would only be warranted if I were someone who really wanted to take every possible measure to carve away every possible percentage point of risk of recurrence.  Also, she said the only reason that she herself might lean toward recommending for me is that I had two lesions.

    Personally, I wasn't particularly inclined to follow the hormonal therapy even before I knew that I had tubular carcinoma.  But once that was on the table, I was just like "Forget it" and my oncologist doesn't disagree.

    Give your mum a big hug and remind her of how great her prognosis is, and tell her to ask her own oncologist the question:  what is the risk of recurrence without the drug vs. the risk of uterine cancer caused by the drug?

    --- oh, I also want to add -- let her know she doesn't have to make her decision immediately.  I would not have started on the Tamoxifen until after I finish radiation, if I had chosen to proceed with the hormonal therapy.  So she can take her time making up her mind and finding out about it. 

  • janey47
    janey47 Member Posts: 72
    edited July 2009

    Just as a clarification -- this has been bothering me all weekend & I really need to make sure I'm not misunderstood here -- tubular carcinoma is an unusual subset of invasive/infiltrating ductal carcinoma.  It sounds like you're reading off a final pathology report & that you know for sure that it's tubular.  But I know that until a few weeks ago, tubular and ductal would have sounded equivalent to me, so I just want to emphasize that tubular carcinoma is specifically what I mean here.  The prognosis for tubular carcinoma is spectacularly excellent and, as I say, my oncologist is on board with me declining tamoxifen given my diagnosis.

  • BrittaA
    BrittaA Member Posts: 56
    edited August 2009
    Hi Kris30,
    I know this may be a difficult time for you and your mom especially in deciding what treatment is best for you. I'm a cancer survivor and was a caregiver to my father who lost his battle with colon cancer 2 years ago. Like you and your mom, I had little information on the side effects of chemotherapy and radiation treatment so I started a blog, www.cincovidas.com, that talks about the side effects on the hair, skin and nails.
    I did a post on Tamoxifen and hot flashes that may be helpful to you and your mother to know what to expect from this drug http://blog.cincovidas.com/tamoxifen-side-effect-hot-flashes-5-natural-ways-to-cope as you continue to make your decision.
    I hope this helps.
    Love, strength and survival,
    Britta

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