ALH and on Tamoxifen

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JaneyK12
JaneyK12 Member Posts: 23
edited July 2016 in Benign Breast Conditions

I hope this is the best forum to connect with others who have ALH, no previous BC, and who are on tamoxifen as a preventative. I need some advice. I got an excisional biopsy 3 months ago and am just waiting for the next mammogram and MRI in 3 months for monitoring. Has anyone with ALH gone all 5 years on tamoxifen without getting breast cancer?

I asked my breast surgeon if I should get a prophylactic bilateral mastectomy and he said no. Now I find out I have a leaky heart valve and am afraid to have the prophylactic surgery, even if I decide to do it. It seems that I am just waiting for the inevitable to happen. Could anyone recommend a breast surgeon at a major hospital in Philadelphia for a second opinion?

Thank you so much!

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  • JessieJake
    JessieJake Member Posts: 233
    edited May 2016

    I chose not to use tamoxifen for my ALH. If u'd like to hear my choice please PM me.

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  • Ddw79
    Ddw79 Member Posts: 533
    edited May 2016

    I can relate. I was dxed with ADH and I am taking Evista. I took a long time ( ten months) to make that decision.

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  • momoschki
    momoschki Member Posts: 682
    edited May 2016

    I took almost FOUR YEARS to decide to take Evista!! ADH dx. No problems with the Evista, which I've been taking for about a year and a half. Over 5 years out from dx and no problems... fingers crossed that it stays that way

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  • Ddw79
    Ddw79 Member Posts: 533
    edited May 2016

    You and me Momo. Fingers crossed for both of us. I thought it took me a long time with the hemming and hawing about it. I have no trouble on it either . I have no idea if it's doing anything positive. I pray

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  • Djabi53
    Djabi53 Member Posts: 184
    edited May 2016

    Hi Janeyk12 - I don't know any breast surgeons in Philadelphia but I know there is an active FORCE group in Philadelphia and they may be able to help with a referral. Www.facingourrisk.org.

    I'm taking evista due to family bc history. I'm being monitored every 6 months for 2 years for birads 3 bilateral calcifications. I'm a year into the monitoring and so far so good. I'm getting a 3D mammogram next time and nervous already about it. I know what you mean about waiting for the inevitable.

    Let us know how you are doing.

    Frankie

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2016

    Janey---I have LCIS and family history of ILC (my mom), so my combined risk is more than double that of ALH. but even with that elevated risk level, all my docs felt bilateral mastectomies too drastic. so I have been doing high risk surveillance for almost 13 years, alternating mammos and MRIs every 6 months, with breast exams on the opposite 6 months, took tamox for the full 5 years, and have been taking evista ever since, with little to no SEs from either medication, other than some hot flashes and weight gain (which I would've gotten anyway with menopause!). I just recommend a yearly transvaginal US while on tamox to monitor both the uterine lining and the ovaries.

    Anne

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  • Forelore5
    Forelore5 Member Posts: 6
    edited July 2016

    I have Alh and 5 years ago at my 6 month mammo and ultrasound showed a mass in left breast . I was referred to a surgeon who did a biopsy it was benign. I was sent to an Oncologist for consult to see if I was a candidate for genetic testing. I was but chose not to my mother passed from bc and both my sisters had double mastectomies and all had tested negative to Bracca and still had cancer. So my Oncologist started me on Tamoxifen which I have taken for the 5 years regime. I had a total hysterectomy 7 weeks ago. I have neuropathy and osteoporosis which my neurologist says could have been from Tamoxifen. I went through menopause and started bleeding again in December 2016 . My Gyn did an D&C with hystoscopy and biopsy. He was concerned that maybe the Tamoxifen caused uterine cancer. Biopsy was negative for uterine cancer but my uterus was mushy prolapsed stage 2. When I had the hysterectomy there were so many problems and my Gyn still thinks Tamoxifen was the cause. I was scheduled for my 6 weeks check up after hysterectomy about the same time as my 6 month mammo and ultrasound so I had them all done on same day I live an hour from my Gyn. I had my mammo done and ultrasound before I left the ultrasound room I was asked to get a few more mammo films of my right breast I knew they had found something . They called the next day and said they found some cysts and a mass in the right breast and sent me to a breast surgeon . I had my biopsy 2 days later this past Thursday the 21 I have to wait till the 27 for results. So I wonder if the Tamoxifen helped or hurt or just genetics

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