pre-menopausal ILC

debbsie
debbsie Member Posts: 45

If you are premenopausal, do they automatically want to put your ovaries out of service?  Is it just temporary or do they typically go for long term?  Or does it really depend on if you are planning to get pregnant in the future (I'm not).

Comments

  • SAMayoFL
    SAMayoFL Member Posts: 958
    edited March 2011

    Debbsie, before I found out that I was BRCA+ my oncologist said that he would recommend a hysterectomy/oomph around the two year mark of me being on Tamoxifen.  Apparently Tamoxifen increases the risk of uterine/ovarian cancer after a period of time.  When I found out that I am BRCA+, however, the timelines were moved up.

    I am sure someone else with more information will come along to post too.

    Susan

  • nash
    nash Member Posts: 2,600
    edited March 2011

    For me, it depended on which oncologist I was talking to. My first onc, with whom I did my chemo/rads, wanted me to do 5 years of Tamoxifen, followed by an oophrectomy and then 5 years of an AI. I switched to a different onc for my followup care, and she just has me on the 5 years of Tamoxifen, no other treatment. Her theory is that it's good for the body to function as normally as possible, and I'm in agreement with her. My period came back about a year after chemo ended. I'm done having kids and will be 44 when I come off of Tamoxifen, but am comfortable with my onc's approach.

     My tumor was moderately ER/PR positive--the situation may be different for a premenopausal woman with a highly ER/PR tumor.

  • debbsie
    debbsie Member Posts: 45
    edited March 2011

    Thanks for the detailed info.  Sounds like if they do recommend oopherectomy it is much later in the treatment.  I had not appreciated that before!

  • momand2kids
    momand2kids Member Posts: 1,508
    edited March 2011

    Hi

    I have lupron shots to shut down my ovaries and take femara.  This was because i could not take tamoxifen because I had a prior blood clot..... I am 2 years in--no one thought I should take out my ovaries--this seems to work because you have to be in menopause for the AI's to work... so I am there temporarily....

  • cathmg
    cathmg Member Posts: 278
    edited March 2011

    Hi Debbie,

    I was 43 when diagnosed, and am 46 now. Still premenopausal despite chemo.  My onc and I discussed having my ovaries out and going on AI's, but I don't think the benefit was great enough to make it a priority. He wants to see if I'll go into menopause naturally after 5 years of Tamoxifen, and then I could go on AI's-I have about 2.5 years to go...

    I'm thinking I may NOT go on AI's. I'm tired of the foggy brain and achey joints.

    Best,

    CAtherine 

  • karen1956
    karen1956 Member Posts: 6,503
    edited March 2011

    debbsie.....My onc talked about ooph right from the start.....I had multiple tumors and was in the lymph nodes even prior to surgery.....the only unknown at the time of bilat was rads......both surgeons recommended bilat and onc concurred with this....good thing as prophy side was pre-cancerous......My treatment protocol was bilat, TAC chemo, rads, AI's ooph....I was perimenopausal at time of Dx....just 3 months shy of the big 50!!!  I don't regret having my ovaries out....it is hard being slammed into menopause, but at going on 55, I would probably be menopausal anyways...

  • 37antiques
    37antiques Member Posts: 643
    edited March 2011

    I had a total hysterectomy after treatment.  I already had my kids, so that was fine, and am totally through menopause now.  Not taking any hormones or ai's, so I find it nice to be on even keel all month, I'm sure the hubby appreciates it to.  But I had had abnormal paps, so that was probably a determining factor,

  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited March 2011

    I was 43 when I had chemo and was pre meno. My periods never came back and my ovaries are so small that the GYN can barely tell I have any. I think it really depends on the doctor. Hugs, Mazy

  • JennyB100104
    JennyB100104 Member Posts: 237
    edited March 2011

    Interesting stories. I was 39 when diagnosed, and I'm on tamoxifen. No talk of a hysterectomy yet, although I guess that'll be revisited when I'm done with tamoxifen (and I was HIGHLY er+/pr+).

    Jenny

  • mymountain
    mymountain Member Posts: 184
    edited March 2011

    Debbsie,

    As far as I can see, there is no rhyme or reason to the oophs.  This is of course aside from the BRCA+ carriers.  I know two women who had the ooph at the same time as their lump or mastectomy.  And some who have never spoken of it with their docs.  Those darn ovaries are a double edged sword, supplying the E+ tumors with their fuel, and at the same time, protecting our bones and heart.  I was peri meno @ dx @ 50.  Now all the parts are gone, due to some other problems

  • Nicoleb
    Nicoleb Member Posts: 10
    edited April 2011

    I am 37 and just finished my fourth and final dose of AC, before starting Taxol. When I told my onc. That I had just had my second period since starting chemo. she said we should start Goserelin to shut down my ovaries. I had my first injection yesterday. Sounds like she will want me on this all through Tamoxifen tx as well. I am wondering about surgical removal of ovaries vs. monthly shots for five years. Anyone have thoughts/advice on this matter?

  • rgiuff
    rgiuff Member Posts: 1,094
    edited May 2011

    Debbsie, I think it depends on how advanced your cancer is and possibly how close you are to going into natural menopause anyway.  Early stagers seem to be spared this type of recommendation.  I was perimenopausal at diagnosis and nobody ever even suggested this as a treatment.  I didn't even know it was done until I started reading posts on here.  It would have been out of the question for me if anyone had suggested it, as I don't think it's a good thing to remove healthy ovaries.  Nash, I like the way your Onc thinks, she looks at the whole body, not just the cancer.

    As it turns out, I think I'm postmenopausal now anyway, was 47 at diagnosis, now 50, and last period was 15 months ago.  My lab values however, don't show postmenopausal range, so it could be partially a tamoxifen induced menopause.  So I'm curious to know if it would reverse once I stop the tamoxifen.

  • sgreenarch
    sgreenarch Member Posts: 528
    edited May 2011

    Hi. I am deep in the midst of this controversy, suddenly! Hard to decide what to do. E2 levels are crazy high. Were 200 in sept when i started tam but are 2469 pmol/l now. Gyn says this can happen on tam but that we cannot leave it like this and must treat it. Choice is between shots each mo or ooph. Had a hysterectomy in jan 08 but kept these hearty ovaries and cannot tell menopause status withoutblood tests. BC dx at 50 but no one recommended ooph as i was so 'close' tomenopause. I am leaning toward ooph as these shots arent SE free and i wouldnt mind having the ovarian ca risk removed. On the other hand i am tired of losing body parts and no way to tell the long term effects of this loss. Did first shot for now as high e2 levels give you symptoms of early pregnancy, queasiness, exhaustion and wow incredible weepiness. Fun! Would never have thought of this as i ascribe every weird feeling to tamoxifen. Glad gyn ordered blood tests.



    Would love your advice. All the best, shari

  • momand2kids
    momand2kids Member Posts: 1,508
    edited May 2011

    Shari

    I hav been doing lupron for about 2 years now--once a month shot---takes about 2 minutes at the gyn office---- and the main effect is to shut down my ovaries so I can take an AI---it took me about 6 months to adjust to se's and now things are pretty much fine, but the beginning was hard----- I just talked to onc about it the other day-she said average age of menopause is 52-so I have to stay on the lupron for a little longer----

     I have seemingly healthy ovaries so I wanted to hang on to them-so this works for now. You could try the shots for a few months, then if you find it too hard, you could have the ooph.  As one onc said to me, you can always take things out , but you cannot put them back"

  • Romansma
    Romansma Member Posts: 1,515
    edited June 2011

    I'm still in radiation treatment right now, but my onc wants me to have the oopherectomy soon.  I will start on Tomoxifin and then switch to AI after ooph.

  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited June 2011

    I like the idea that mommaand2kids has - try the shots and if the SEs are too much then go the ooph route.  Since I'm BRCA2+ it made sense to do the BSO.  The surgery was easy and since I'd already been in chemopause with hot flashes I didn't notice anything else.  But there is nothing wrong hanging on to functioning, healthy body parts!  I was asked if I wanted my uterus out along with the ovaries but since it is healthy and doesn't cause me any problems my answer was 'NO!'.  Enough is enough.I

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