How does Tamoxifen effect women in their 30s?

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sm627
sm627 Member Posts: 298
edited August 2017 in Hormonal Therapy - Before, During, and After

Hi Ladies,

My name is Sara I am 33 years old and was diagnosed with a rare form of breast cancer called a phyllodes tumor. I had to have a mastectomy of my right breast last month in June. My Pathology report came back saying that my tumor was borderline and that I had the ADH marker for a higher risk of developing the normal kind of breast cancer lucky me LOL. My oncologist as strongly suggested that I take tamoxifen. I know that everyone is different but I would like to hear the experiences of women that have taken or are currently taking tamoxifen in their 30s.

What kind of side effects did you have and how bad were they?

Did side effects last a long time?

Could you live your life and feel somewhat like yourself and find happiness in your daily life while taking tamoxifen?

What medication were you given to reduces some of the side effects?

What were the withdraw symptoms?

If you are no longer on Tamoxifen how are you feeling today do you feel like yourself and able to live your life in a "normal" way like you did before taking tamoxifen?

Thank you for any help you can provide. Hearing your stories will help me make an informed decision on weather I should start taking it. I have been feeling so stressed out and overwhelmed with all of my breast issues I don't know what to do anymore. Coming to these discussion boards has been a great form of therapy for me and made me feel a lot less scared and that the world is not ending.

Hugs and Love to all,

Sara

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  • gb2115
    gb2115 Member Posts: 1,894
    edited July 2017

    I am 39 and have been on tamoxifen since late February. I get hot flashes mid cycle, and the last couple cycles have been stretched out (like 6 weeks instead of 4). Right now I am waiting to see when/if my period will start. No other side effects, honestly I don't even think of it much. The hot flashes are annoying but don't really affect my daily life at all. I am fine taking tamoxifen.

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  • sm627
    sm627 Member Posts: 298
    edited July 2017

    Hi gb2115,

    Thank you for sharing your experience with me. Glad to hear that you are not bothered to much by the side effects. After your cycle is over do the hot flashes stop until your next one comes? Are you considering contacting your oncologist if you don't get your cycle for several months.

    Thanks Hugs,

    Sara

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  • gb2115
    gb2115 Member Posts: 1,894
    edited July 2017

    The hot flashes only happen right around ovulation (which I can feel and am always aware of), so maybe a week or so. Then they go away. I haven't had one in awhile, and I would have expected my period by now. Well, it's been 5 1/2 weeks. Last time it was 6 weeks apart.

    I don't know...at my last oncology follow up, she asked me if I was still getting my periods, and said they might stop. So she made it sound very routine. She did say to call my gyn if I had unusual bleeding, which I took to mean heavy bleeding. I looked up the ACOG guidelines, and they don't recommend any extra monitoring by GYN for premenopausal women on tamoxifen other than regular screening, so I don't feel like it's an emergency. I thought if I go a couple of months without a period I might call the gynecologist and see if they want me to come in, but I go in for a regular appointment in October, so I don't know. I feel like by October I'll have a good grasp on the degree of irregularity. I never know when I should call or not. :-)


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  • sm627
    sm627 Member Posts: 298
    edited July 2017

    I hope things start to get back on track for you soon. I understand it can be hard to know when to call the Dr especially when they tell you that something is normal. One must stop and think okay when is this normal thing lasting too long and should you get worried about it or let it go. Have you done any thing fun this summer? I went to get an ice cream cone the other day that has been my fun thing for the week. LOL

    Wishing you all the best thanks again for sharing your story with me it helps me so much.

    Hugs

    Sara

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  • gb2115
    gb2115 Member Posts: 1,894
    edited July 2017

    I got an iced latte from Starbucks today just because, does that count? Lol, I never do that because I hate spending money, but it was JUST the thing!!!

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  • sm627
    sm627 Member Posts: 298
    edited July 2017

    Yes! that so counts LOL. Good for you it nice to treat yourself every now and then. It is nice when little things like buying something to drink can bring a little joy to your life. Are you going back to Starbucks next month for another iced latte?

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  • gb2115
    gb2115 Member Posts: 1,894
    edited July 2017

    Haha...maybe! We'll see!

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  • Eibra
    Eibra Member Posts: 24
    edited August 2017

    one of the most common side effect is endometrial cancer , so if you get thickening in the uterues or bleeding issue you need to get checked by gynecologist at keast every 6 monthes , i started tamoxifen four month ago , then I stopped it because if a big ovarian cyst developed as a side effect, i was realy concern about that , and my er is very weakly positive and in two hospitals was negative so i think if I stopped it it won't harm me as well ,

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  • sm627
    sm627 Member Posts: 298
    edited August 2017

    Hi Eibra,

    Thank you for sharing your story with me. I am so sorry you had to go through that experience who scary that must have been for you. I will keep what you said in mind. I hope you are doing better now.

    All the best,

    Sara

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