Scared of Tamoxifen

Options

Hi ladies,

I've been reading different posts about everyone's experiences with Tamoxifen. I'm feeling a little overwhelmed with the amount of information and it seems like many of your experiences are different! I have a few concerns that I would love to get some feedback on. Please feel free to give your input on any or all of my questions. Thank you so much ❤️

1. I am 28 years old. Any ladies taking Tamoxifen in your 20s?

2. I’m completing my 4th and final round of TC chemo next week! I have hot flashes constantly, vaginal dryness, and pretty much zero sex drive. Will this stay the same on tamoxifen? My oncologist tells me it will improve but sometimes I think he downplays side effects....

3. HAIR! What’s your experience with hair regrowth/thinning? Any tips to help the regrow process?

4. What are your experiences with mood swings/depression? This seems to be a common side effect as well.

5. My biggest, scariest concern is uterine cancer. My oncologist tells me there is a 40% chance of uterine cancer from Tamoxifen. Has anyone developed uterine cancer from this drug? I’m terrified that I am trading one cancer for another but feel it would be foolish to go against my oncologist’s advice. I am 28 years old and still want to have a family after this nightmare is over.

Thank you in advance to anyone who can even answer one of my questions. I truly love this site and the strong women who share their experiences are so inspiring to me

Comments

  • sm627
    sm627 Member Posts: 298
    edited January 2018

    Hi Sarahstronger,

    My name is Sara and I am close to your age I am 33 years old. I know how you feel about Tamoxifen, I felt the same way you are feeling now when I was thinking about weather to take it or not. I have been on Tamoxifen for 4 months now and the side effects I have had have become more mild with time, and I can now live with the ones that I do have. to answer some of your questions.

    2. has for hot flashes my oncologist told me that women in there 20's and 30's should not get to many hot flashes maybe one or two and then they will stop. So far I haven't had any hot flashes at all. As for vaginal dryness you will have the opposite problem and get vaginal moister according to my oncologist Tamoxifen does not cause vaginal dryness. I have gotten some vaginal moister.

    4. I haven't had any mood swings so far but if it does happen I will look at it as my time to be a little b*chy, and I will tell people it's not me talking it is the Tamoxifen. LOL

    5. My oncologist told me that there is a 0.1% chance of getting uterine cancer and it is very unlikely for young women like us in our 20's-30's to get it. She told me that because we are still having our period we shed the lining of our uterus every month that reduces the likely hood that we will get uterine cancer. It is nice that periods are good for something.

    If you would like more information please PM me. I took a lot of detailed notes and asked my oncologist about 30 questions and she was very thorough in her answers. I learned so much from her that made me feel less scared.

    As far as side effects go for me the only ones I currently have are pelvic pain(like having period cramps) and muscle/joint pain in my legs. However most of it is mild and I can manage it by walking daily and drinking lots of water. For me personally it took a good 3 months for my body to adjust to Tamoxifen, and there were some days that were harder then others. I told myself I would try it for 3 months and if I could not stand the Side effects then I would stop taking it. Today I can say I feel much better then I did when I started taking it 4 months ago.

    If you have any other questions please ask we are all here to support each other through all these BC crap.

    Wishing you all the best.

    Sending you Love and Hugs,

    Sara

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited January 2018

    Make sure to research other existing topics on the hormonal forum. Some of these topics are well covered in Bottle of Tamoxifen!! Good luck.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2018
  • ksusan
    ksusan Member Posts: 4,505
    edited January 2018

    My oncologist tells me there is a 40% chance of uterine cancer from Tamoxifen.

    No. 0-2% according to every gynecologist and oncologist I've talked to. Here's a useful section in MelissaDallas's link:

    In one early study of the National Surgical Adjuvant Breast and Bowel Project, the rate of endometrial cancer occurrence among tamoxifen users who were administered 20 mg/d was 1.6 per 1,000 patient years, compared with 0.2 per 1,000 patient years among control patients taking a placebo (3). In this study, the 5-year disease-free survival rate from breast cancer was 38% higher in the tamoxifen group than in the placebo group, suggesting that the small risk of developing endometrial cancer is outweighed by the significant survival benefit provided by tamoxifen therapy for women with breast cancer (3). Continuation of tamoxifen therapy for 10 years further reduced the risk of breast cancer recurrence and mortality (6). In an update of all National Surgical Adjuvant Breast and Bowel Project trials of patients with breast cancer, the rate of endometrial cancer was 1.26 per 1,000 patient years in women treated with tamoxifen versus 0.58 per 1,000 patient years in the placebo group (7).

    Are you sure your oncologist didn't say that the 5-year disease-free survival rate was 40% higher when taking tamoxifen? Or that only about 40% of people finish the full 5-year course of tamoxifen because of side effects?

  • Cpeachymom
    Cpeachymom Member Posts: 518
    edited January 2018

    Sarah, perhaps your oncologist meant to say a 40% INCREASE in risk, which sounds worse than it actually is. Because 40% increase of a 1% chance is 1.4%. I don’t think many would take it if it was a 40% chance- screw that!

  • sarahstronger
    sarahstronger Member Posts: 12
    edited January 2018

    hi Michelle! I saw lots of info in the “bottle of tamoxifen” post, it was just hard to find exact answers in one place! Thanks for the heads up :

  • teachermomfl
    teachermomfl Member Posts: 104
    edited January 2018

    Hi Sarah! I'm in Florida too! I have an excisional biopsy scheduled for Friday, but as of right now I have a diagnosis of ADH. My surgeon is recommending Tamoxafin if my ADH diagnosis isn't upgraded. I'm nervous about it too. I had an endometrial ablation three years ago, which I've seen could mean I have a lesser chance of uterine cancer, but I still worry. I just wanted to pop in and say hi to a fellow Floridian.

  • marianella7
    marianella7 Member Posts: 6
    edited March 2018

    Hi Sarah!

    First of all CONGRATS on finishing chemo!!!

    I wanted to chime in.. I'm 27. I finished my last round of chemo last July. I was diagnosed with Invasive ductile carcinoma in my left breast HER2+ and went through mastectomy with lymph node dissection.

    So... I might be a bad influence (lol) I went rogue on my oncologists. I still wanted to share my experience though. So just like you, I went through some paralyzing hot flashes. Some were so bad it'd be hard to breathe, and I endured them for months. This is bc of the Zoladex implant I get monthly to "shut off" my ovaries. So that makes me "post menopausal." I experienced something called "vaginal atrophy" which basically means your vagina shrinks, or closes up. Forget vaginal dryness, this made sex SO painful! It eventually went away though. The mood swings, well I mean, look at what you're going through. I don't think they should be called mood swings at all, bc they're totally warranted. Anyway I'm rambling.

    So as far as the tamoxifen goes. Both my oncologists said I had to do radiation. Which I opted not to. I did a ton of research and asked a bunch of questions, and I made the conscious decision not to. Instead I decided to start a new regimen of vitamins every morning that researched showed me would prevent recurrence. Bc tamoxifen has so many weird side effects, similar to all the sh*t I'd endured previously, I've decided to also not take it. I was first prescribed Arimidex. I didn't take that one either. But then, even with the zoladex, i started to menstruate, it seemed. So my doctor switched me to tamoxifen. Either or, I'm not taking them. My doctor has me on monthly tumor marker blood tests to monitor any changes. and so far so good. So i'm sticking to the natural route!!

    Good luck!!


    p.s. for hair regrowth i used ds laboratories revita shampoo and cor conditioner, and they worked wonders! check eBay

  • sarahstronger
    sarahstronger Member Posts: 12
    edited April 2018
  • sarahstronger
    sarahstronger Member Posts: 12
    edited April 2018

    ksusan,

    you were RIGHT! I thankfully misunderstood him. What he meant was women taking Tamoxifen have a 40% higher chance of getting uterine cancer than women who do not take this medicine, but the likelihood of developing is low... 1-2%. Interestingly enough, my MO decided to go a different route with my hormonal therapy. I am doing monthly Zoladex injections and taking Anastrazole daily. My MO said this therapy does not run the risk of uterine cancer or blood clots like Tamoxifen, but it does have all the pesky menopause side effects and some others as well. Anyway, thank you so much for your reply and reassurance. :)

  • sarahstronger
    sarahstronger Member Posts: 12
    edited April 2018

    cpeachymom -- yes! that was what Thank you so much for your reply. I am glad I misunderstood him :)

Categories