How many of you still have periods on Tamoxifen?

Options
shelleym1
shelleym1 Member Posts: 298
edited July 2015 in Hormonal Therapy - Before, During, and After

Ok, so I'm trying to figure out if there is anyone that didn't do chemo and still gets their periods or if your period returned and you still did just Tamoxifen? I still have my normal periods. I'm 35. I am wanting to opt for Tamoxifen only, but it seems like everyone that is doing Tamoxifen is already in menopause, having their ovaries removed or shut down with injections. Maybe this is a misconception?

· Share on FacebookShare on Twitter

Comments

  • Mabs
    Mabs Member Posts: 36
    edited May 2015

    Shelley, I'm 36, didn't do chemo, I was on tamoxifen only (for 5 months) and my periods were regular but my estradiol went up to estratospheric levels... So I am now on monthly zoladex and daily tamoxifen... I had my 2nd zoladex injection yesterday... Hiw old are you? Did you do chemo

    · Share on FacebookShare on Twitter
  • shelleym1
    shelleym1 Member Posts: 298
    edited May 2015

    Hi Mabs, I'm 35. I got my first Lupron shot on 5/8. She has prescribed Femara. I haven't started the Femara yet because I'm scared to! I also don't like these shots. I really want to do just Tamoxifen. Did not do chemo because of low oncotype.

    · Share on FacebookShare on Twitter
  • softness1
    softness1 Member Posts: 217
    edited May 2015

    I did Tamoxifen and had my periods for about 1.5 years. I was 41 when I was diagnosed so I was still very much so getting my period. It didn't affect it

    I've always had horrible fibroids and ended up having a hysterectomy last Sept. but that was a separate issue that was ongoing prior to breast cancer.

    · Share on FacebookShare on Twitter
  • Monis
    Monis Member Posts: 472
    edited May 2015

    I was 46 and premenopausal when I started Tamoxifen. I had no chemo. I am still getting periods but they have changed a little bit - Spacing between them has gotten a little more irregular and they vary in severity. Have been on Tamoxifen for almost 1 1/2 years now.

    · Share on FacebookShare on Twitter
  • Ang7604
    Ang7604 Member Posts: 8
    edited May 2015

    Shelly, I was diagnosed at 48. I didn't have chemo. I started tamoxifen in January and I am having regular periods. I was on bcp's for years and stopped in December, so my periods are now heavier than before. I asked my oncologist why some people are put on lupron. She didn't have an answer for me. I'm still unclear on that.

    · Share on FacebookShare on Twitter
  • MrsDarcy
    MrsDarcy Member Posts: 162
    edited May 2015

    Good morning Shelley,

    I was 45 at time of DX and starting Tamoxifen, and premenopausal. I have had periods ever since (started Tamox in Feb. 2014). My periods are intense - and almost prevent me from going to work .. It's actually at the point where my Onc told me to get a quick appointment to see my gyn. (seeing her this week) to discuss options and he (Onc) wants a biopsy (uterine) done as well.

    Recent blood tests show that I am anemic and now on top of taking daily doses of Tamox, calcium, vitamin d, melatonin to sleep, I get to pop an iron pill at lunch LOL !!! But if it helps .. I will not be complaining. Just need to alter my diet a little too.

    I usually have my periods every 30 days. This time I think I was closer to 40 or 45 - and the last 2 weeks have been painful. I am nervous to meet my gyn. and what will/may come next - but I had already set myself straight along time ago that this could happen.

    A girlfriend of mine recently had an endometrial ablation with the rollerball method (she is also a breast cancer survivor). She no longer has her periods. However I have read mixed reviews on this procedure.

    Not sure what I want the next step to be - I have done well on Tamoxifen - what a crazy road bc leads us down.


    .

    · Share on FacebookShare on Twitter
  • shelleym1
    shelleym1 Member Posts: 298
    edited May 2015

    Ang, I don't know what your stats were but if you are considered low risk and over 35 then the SOFT trial says Lupron isn't necessary.

    · Share on FacebookShare on Twitter
  • softness1
    softness1 Member Posts: 217
    edited May 2015

    I think a lot of perimenopausal women believe that it's the Tamoxifen that makes our periods become heavy. It's confusing but I do know in my late 30's before my dx my flow became heavier.

    My Gyno told me I was perimenopausal and it could last within 4-10 years. I had fibroids and it only made it worse. I would bleed to the point of once needing a transfusion (that is why I went through with the hysterectomy last year) I really couldn't distinguish whether Tamoxifen made it worse or not because it's what I was told would happen prior

    · Share on FacebookShare on Twitter
  • snorkeler
    snorkeler Member Posts: 145
    edited May 2015

    I was diagnosed at 41 and have been on tamoxifen for 3 years now. Low Oncotype so no chemo. Was on hormonal birth control for many years, and when I stopped and got an IUD my periods became farther apart but still fairly regular. I'm fine with being only on tamoxifen now. It's the standard of care for my situation, and with ovarian suppression/removal I'm concerned about the possible impacts on cardiovascular health, bone density, sexual functioning, etc. I'm tolerating tamoxifen well and all things being equal I wouldn't mind being on it for 10 years, but my MO considers me low risk and is not sure if it's worth it for me. We're going to watch my bone density, so I'm really trying to work on that in the meantime.

    · Share on FacebookShare on Twitter
  • MrsDarcy
    MrsDarcy Member Posts: 162
    edited May 2015

    On Christmas eve I bled so bad that I had to wear my coat (winter!) around my waist because it had made it's way down to my knees (apologies for the graphic image). That was the trigger sentence for my Onc to look further into this. Plus he also questioned how many pads I use during my period, etc ..

    I am not saying it's Tamoxifen .. I really wouldn't know .. my Onc didn't say it either .. but the coincidence of heavy periods (and now painful) only started when I started Tamox.

    When you are afraid to get up from your office to go to your boss's office for fear of a "flood" .. it's a sign that something needs to be checked out .. regardless of how you got there ;)

    :)


    · Share on FacebookShare on Twitter
  • treelilac
    treelilac Member Posts: 245
    edited May 2015

    I remember Tamoxifen inhibits estrogen's effect in the breast but stimulate it in the uterus (the 2 body parts must have different types of estrogen receptors). It thickens the lining of uterus. My periods were heavier and I was anemic at one point according to the blood work. I was first diagnosed at 42 and stopped using Tamoxifen after about 3 years due to the side effects.

    · Share on FacebookShare on Twitter
  • SweetThing
    SweetThing Member Posts: 18
    edited May 2015

    I was diagnosed at 48 and was perimenopausal. I've been on Tamoxifen for a year and the timing of my periods are pretty irregular, anywhere from 20 to 45 days between periods. My doctors tell me to be careful not to get pregnant, really??? at my age that is not even funny. I was told by the MO that Tamoxifen will put me in menopause and when I'm off it I will go through the change again. Yippee! menopause twice

    · Share on FacebookShare on Twitter
  • Juliecc
    Juliecc Member Posts: 4,868
    edited May 2015

    I started tamoxifen 13 months ago and have never skipped a period. They are further apart, though - 39-48 days except for one period that came at 22 days. The first 2 days are very heavy. Before tamoxifen I had very light periods but I also had the Mirena IUD. So maybe the heaviness has nothing to do with the tamoxifen. My Oncotype was 12 so I didn't have chemo. I sort of worry whether the tamoxifen is working since I have the regular periods. Do Onc's test hormone levels to see if they are too high? I see my Onc next month and I go for a blood test a week before just to check liver function. I was diagnosed last year at 46 and wonder if I should be getting ovarian suppression or not.

    · Share on FacebookShare on Twitter
  • shelleym1
    shelleym1 Member Posts: 298
    edited May 2015

    Julie - the SOFT trial says that low risk women that did not need chemo do just as well on tamoxifen as OS+AI. The median age range of the low risk group was 46. OS would be overkill for you, IMO.

    · Share on FacebookShare on Twitter
  • Juliecc
    Juliecc Member Posts: 4,868
    edited May 2015

    Thanks, Shelleym. That's how I interpreted it. I just hope that since I get regular periods that my estrogen levels aren't super high. My Onc never seemed interested in testing them. I know Tamoxifen doesn't really lower their levels but that it works by blocking the receptors on the cancer cells.

    · Share on FacebookShare on Twitter
  • Mabs
    Mabs Member Posts: 36
    edited May 2015

    With me, Tamoxifen alone made my estradiol levels go super super high + i started having ovarian cysts every period + i started having pain at ovulation time... My oncologist told me that this was not good at all...that's the reason why I started OS... Lets see what happens... Up to now, took my second zoladex shot last wednesday, and I dont feel anything diferent...

    I have my estradiol levels checked frequently.


    · Share on FacebookShare on Twitter
  • oceangirl654
    oceangirl654 Member Posts: 217
    edited May 2015

    I am 40. I didn't have chemo. I still have my periods on tamoxifen though my cycle is now 28 days instead of 25 days. I hope this helps!

    · Share on FacebookShare on Twitter
  • theresa45
    theresa45 Member Posts: 314
    edited July 2015

    I am 50 and have been on tamoxifen for 5 years. I still get my period regularly.

    · Share on FacebookShare on Twitter
  • LeftyWasMyFavorite
    LeftyWasMyFavorite Member Posts: 15
    edited July 2015

    I'm 29, no chemo, started Tamoxifen in December 2014 and immediately my periods became heavier (pretty much just clotting), they shortened eventually to three days but come anywhere from two to four weeks apart. My iron was low at one point, on track at the moment. I'm now scheduled for surgery next month. With no plans of childbearing my OBGYN quickly gave me D&C, Endometrial Ablation (burning) and Laproscopic Tubal Ligation(clips) as a solution. He said no more bleeding and no risk for pregnancy which sounds really good to me, but I know doctors tend to leave out a lot of info so I'm left wondering "what don't I know?" and trying not to Google...

    · Share on FacebookShare on Twitter
  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited July 2015

    Lefty, I had a tubal when I was 30 (just after my second child was born) and an endometrial ablation (NovaSure procedure) in 2008. I still have very light periods, but the ablation was one of the best things I've done! No problems at all with either the tubal or ablation.

    · Share on FacebookShare on Twitter
  • LeftyWasMyFavorite
    LeftyWasMyFavorite Member Posts: 15
    edited July 2015

    SummerAngel- Thank you! It's nice to hear of a good experience:)

    · Share on FacebookShare on Twitter
  • trishac
    trishac Member Posts: 2
    edited July 2015

    i have been on tamoxifen for 5 years.I still have periods every month.awful very heavy periods .can't go anywhere for two days of my period every month.stopped taking tamox 2 months ago my last period was lighter.had ultrasound and my uterus is enlarged so I'm looking at hysterectomy.

    · Share on FacebookShare on Twitter

Categories