Ablation or Ovary Removal

Barnett2
Barnett2 Member Posts: 6
edited September 2017 in ILC (Invasive Lobular Carcinoma)

I was diagnosed last year with Stage 1A ILC, chose a lumpectomy and had 2 re-excision surgeries to achieve clear margins. Did 30 rads and have been on Tamoxifen since December with little side effects. However recently after heavy bleeding my gynecologist and oncologist believe my uterine lining is too thick (17mm after 9 days of extreme bleeding). The options presented by my gynecologist is uterine ablation which my oncologist doesn't favor or ovary removal and switch to aromasin. I am 47 and don't know what to do. Anyone have a similar experience?

8/7/16 Dx Stage 1A ILC, ER/PR+, HER-

11/20/16 30 rads

12/21/16 Tamoxifen


Comments

  • MsMisha
    MsMisha Member Posts: 20
    edited July 2017

    I actually was planning to ask a similar question. I had a mirena iud removed right after my diagnosis. And couldn't have a new one inserted since I'm HR+. I used the mirena to help with heavy bleeding, so my gyno wants to do an ablation because she says my periods will be even worse now. I scheduled the ablation for this coming Monday, because she wants to get it done so she's not in the oncologists way. But I'm wondering if I should hold off on the ablation until I move further into the process and can get their opinions?

  • Barnett2
    Barnett2 Member Posts: 6
    edited July 2017

    I am so sorry to hear you are struggling with this as well. It seems there are no good options! I wish I had advice to share but I'm in the same boat, just on the other side of treatment. My gynecologist also mentioned the Mirena can sometimes be used to treat postmenopausal side effects but my oncologist didn't like that optio

  • Lab-girl
    Lab-girl Member Posts: 25
    edited July 2017

    Yes. I actually got a hysterectomy and to continue to take tamoxifen. I may get ovaries out in another year or two but wasn't ready for full on menopause with an AI yet. My doctor recommended suppression first before removal of ovariesto make sure the menopausal side effects of an AI plus oophorectomy weren't too bad. Good luck.

  • Lula73
    Lula73 Member Posts: 1,824
    edited July 2017

    my MO said many studies show mirena helps protect against uterine cancer potential SE from Tamoxifen and since the small amount of hormone is not systemic it was ok to leave in even with being ER/PR+. I followed up with my own research and found the same. Not sure if it's the same with HER2+, however the mirena hormones are ER and PR.

    Did you have genetic testing done? There are multiple genetic mutations that can increase risk of ovarian cancer which would warrant a recommendation to remove them (BRCA1&2 are just 2 of the many mutations.) There is currently no reliable method of screening for ovarian cancer and it typically doesn't show any symptoms til it's too late to do anything about it. With all that being said, your ovaries are responsible for 80% of your estrogen production. Tamoxifen does not stop them from producing estrogen. Tamoxifen just blocks the estrogen receptors on your cells so it can't enter them (it works somewhat selectively). That means estrogen builds up in your bloodstream as it can't all be metabolized and eliminated. This buildup can cause other SEs like blood clots, acne, weight gain, fatigue, etc. so if you have your ovaries removed you remove 80% of your estrogen load. The AIs stop the conversion the androgen hormones to estrogen in your body. Having tested positive for a genetic mutation that increased risk for ovarian cancer ( +12% risk), having history of it in the family, and developing blood clots from the Tamoxifen, I will have my ovaries & Fallopian tubes removed and due to the risk of developing uterine cancer from having taken Tamoxifen (even with mirena) + heavy bleeding without mirena, I will have uterus removed too.


  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited September 2017

    i had a hysterectomy before I was diagnosed with bc. I was 39. I had a mirena perforate and when they removed it my periods were terrible. So my dr said my uterus was enlarged and suspected adenomyosis. They took everything and left my ovaries. Used the davinci robot assist. Best decision ever. But now I'm wondering if I end up being er pr + if oophorectomy would be a good idea. I haven't gotten that part of my pathology report back yet.

    I was told for me hysterectomy was a better choice than taking any hormones because I was at risk for stroke with the type of migraines they gave me. (That's how he put it). He didn't want to take my ovaries because he said it put me at risk for early osteoporosis.

    All I know is it was a super easy recovery and stopped the horrible bleeding etc.

  • Momine
    Momine Member Posts: 7,859
    edited September 2017

    Yes, I had an ooph and partial hysterectomy to put me in menopause and make it possible for me to go straight on an AI. I was 48 at the time. Being booted into menopause overnight was NOT fun. I was in a total funk for about a month, and then had another 6 months or so of adjusting to all the changes. However, once things settled, it was really perfectly fine.

  • Barnett2
    Barnett2 Member Posts: 6
    edited September 2017

    Thank you for all the replies!  After much debate, worry and agonizing about what to do, I am scheduled Wednesday for a d&c, test the tissue and if nothing suspicious will have an ooph. If anything is found will end up with hysterectomy.  I am not looking forward to the surgical menopause but am staying positive and know I have made it through everything so far and while this may be rough, I'll be ok.  Bonus will be no more horrible monthly cycles, reduced risk of gyno cancer and reduction in recurrence for breast cancer.  I really appreciate all the great guidance and advice this site provides. It's comforting but sad to know others facing the same things...hugs to those who have already been through this.

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