Tamoxifen & Fibroids. Hysterectomy scheduled

Options
JJOntario
JJOntario Member Posts: 356

I've been taking tamoxifen since January 2015. In September I found a small bump near my right ovary. Sometimes I felt it...sometimes I didn't. Life was too busy...(I got pneumonia...the holidays, work...) so fast forward to January of this year where I finally brought it up with my Dr that my bladder couldn't hold anything anymore (my DH was frustrated as we couldn't go anywhere without having to stop for me). By this time the bump was a lot bigger. My Dr kind of freaked out. Large pelvic mass...did US and MRI...messed up my head with them even thinking it was cancer. Gynaecologist said the results showed a large 11 cm fibroid. It's so large I'm nowscheduled for a total abdominal hysterectomy in April. The bump right now can be seen when I'm laying down. I'm afraid of going through another big surgery and going into instant menopause. I'm really wondering if tamoxifen caused all of this? Even though I'm estrogen positive I'm worried about living life with no estrogen. Anyone else like me?

Comments

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

    I can relate to your concern. I've had two myomectomies, one in the 90s, one in 2009, to remove fibroids. Because I believe our uteri are functioning organs beyond simply being baby incubators--research suggests they secrete prostaglandins which help protect our heart and circulatory system--I opted both times to keep mine and not have it yanked out, thereby also decreasing my risk for vaginal and other prolapses later in life as well (those female organs keep things "tucked" up better inside us too).

    But hysterectomies are a choice, and often we can't find skilled surgeons to leave the uterus but remove the fibroids (the way I felt, my uterus was fine, it was the fibroids causing the problems). I was lucky to find a surgeon who would remove the fibroids and leave my uterus; I had multiples of them both times, and both times I recovered. The surgery is tricky and often more risky, but I was glad I went this direction.

    However, we still have small amounts of estrogen circulating in our system even when we are menopausal. I don't think we ever go completely without estrogen.

    If tamoxifen reduces circulating estrogen, and fibroids are fed by estrogen, which they are, I don't see a correlation to your fibroid and taking tamox.

    Hopefully others will weigh in on it.

  • JJOntario
    JJOntario Member Posts: 356
    edited February 2016

    I think I'm confused by way of if tamoxifen reduces circulating estrogen and fibroids (and breast cysts) are fed by estrogen....why would this pop up now? Wouldn't tamoxifen help?

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited February 2016

    Tamoxifen does not reduce circulating estrogen. The way it reduces breast cancer risk is by binding to the estrogen receptors on breast cells so the real estrogen cannot. It has different effects in different parts of the body. It is antiestrogenic on breast tissue, but hyperestrogenic on the uterus.

    One thing to ask the Gyn is whether the cervix can be spared in order to reduce the chance of future problems.

  • JJOntario
    JJOntario Member Posts: 356
    edited February 2016

    Thank you so much. I'm constantly learning and your advice is welcomed! What are the benefits of keeping the cervix? Better support?

  • Lvbugs
    Lvbugs Member Posts: 64
    edited February 2016

    I had a total hysterectomy in November 15, because of two large fibroids 9 and 5 cm. I think that it was a problem that started before the Tamoxifen as I was having a lot of painful cycles over a year prior to starting it. I only kept one ovary to help with bone and heart health and have had no problems with hot flashes or mood swings. I feel great and am relieved from the back and pelvic pain I was having. Have you asked your doctor if they would keep your ovaries? Ask your MO if it would help with recurrance if ovaries were removed. I am ER/PR positive to, but I was told that removing or suppressing ovaries has a slight benefit and not worth the side effects

  • JJOntario
    JJOntario Member Posts: 356
    edited February 2016

    You are giving me hope. My gut is telling to keep my ovaries because I'm too afraid of the emotional changes involved with quitting estrogen cold turkey. My periods have always been painful...3 days of Advil every month. My main issue is with it pressing on my bladder. I didn't know you could keep just one ovary. The gynaecologist I seen (once) seemed to think it was a given that she'd take them because of me being estrogen positive. I'm also afraid of how painful this surgery will be! I'm starting to think I'm an estrogen making machine

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

    Hi JJOntario, re cervix, yes, I think so. I just remember doing vast amounts of research in 2009 before my decision to have the second myomectomy and finding that vaginal prolapse is a real concern with uterine removal. BTW, I had 89 fibroids (I am not making that up) removed at Mayo Hospital during the second myomectomy. Stands to reason that the bc found 2 years later was about 1000% ER+!!!

    My yearly paps are interesting; my uterus is now so small that they have to find it using an ultrasound when they do an internal exam to check my ovaries (since I'm ILC, bc likes to migrate to female organs like that). Last time the tech tried to do an internal US and asked me if I still had my uterus. I said yes, explained that I had dozens of fibroids removed, and she had to use the US wand on my lower abdomen to check my uterus!

    C

  • Lvbugs
    Lvbugs Member Posts: 64
    edited February 2016

    Ha ha, that's funny about estrogen machine. That's how I feel. Keep questioning if Tamoxifen is working. You can get some good information on Hyster Sisters website

  • JJOntario
    JJOntario Member Posts: 356
    edited February 2016

    I found hystersisters...lol.thank God for these info boards...and the great people on them.

  • Lvbugs
    Lvbugs Member Posts: 64
    edited February 2016

    I'm glad I could help. Good luck to you. Let me know how it goes. These threads have definetly helpedme numerous times.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited February 2016

    I logged on to recommend hystersisters and I see you have found them. Yes, keeping the cervix may help avoid a prolapsed bladder. Also, my gynecologist said the cervix has a role in lubrication. One more thing--there may be a link between fibroids and low vitamin D, at least for some people. So getting your 25 OH-D checked and supplementing with D3 if indicated might help. Also, can your gynecologist use Lupron to shrink the fibroids enough that a smaller type of surgery could be done?

Categories