premenopausal- tamoxifen only or ovarian suppression + AI?

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  • Mommato3
    Mommato3 Member Posts: 633
    edited January 2016

    The SOFT study didn't recommend OS for women that didn't need chemo.

    JerseyGirl, I would definitely recommend doing OS first to make sure you can tolerate it. You can always do an ooph later if the side effects are tolerable. I did OS for six months before my ooph in September. My only side effect was hot flashes. I chose to do an ooph but my situation is different. My mom was diagnosed with ovarian cancer at age 18. Even with that information, I still struggled with whether to have it done. I did keep my uterus which was not what my gyn initially recommended. It's a tough decision. You need to do whatever helps you sleep at night.

  • Cubbie2015
    Cubbie2015 Member Posts: 875
    edited January 2016

    Tshire, I'm reading the SOFT study this afternoon, and I see what you mean. My big concern has been that in my family, menopause tends to occur very late (like in our late 50s) which makes me wonder if hormonally, I'm closer to a 30 something than a 40 something. But since I didn't need chemotherapy, maybe I don't need to be concerned about it anyway. I'll see what my MO says.

  • SoCalGrl
    SoCalGrl Member Posts: 105
    edited January 2016

    I'm 40 and have decided to do OS and have been on Femara for about 2 months now. I take it at night and don't have any major issues with it so far. (KNOCK ON WOOD)

    As far as my side effects are concerned, I don't really have a lot of the full blown issues that some people are experiencing. Maybe I haven't been on the treatment plan long enough though, so I'm still cautiously optimistic. My biggest issues so far are stiffness in my joints. If I stay seated too long, moving around starts off stiff, but once I get going I'm fine. I do have an occasional hot flash, but nothing debilitating.

    Technically I didn't need chemo either. I fell into the intermediate oncotype and elected to have chemo, so I'm not sure where that puts me in the soft trial studies in that regard. When comparing Tamoxifen with OS+AI my MO told me that the side effects of OS+AI were not life threatening.They might be uncomfortable, but were manageable. She mentioned the risks with Tamoxifen were things like cervical cancer, blood clots - basically the negative effects like you would anticipate with a birth control pill. She said those side effects were on the rare side, but they still needed to be considered.

  • hamfam
    hamfam Member Posts: 11
    edited January 2016

    Hi there! All any of us can do, I suppose, is share our personal experience which may or may not be helpful to you! I am 36 (34 at dx). I was stage 1, grade 2 and my oncotype was 8. I started tamoxifen 2 years ago December after delaying it for 3 months because I was terrified of the SE's. I wanted to get through the big part of my mastectomy and reconstruction before taking on anything else. The first few days I had a little headache. After that, I got hot flashes maybe once a day on average- very bareable. SIX oncos recommended that I have an oophorectomy, but the gynecological oncologists tried to talk me out of it for 2 years because of the "terrible side effects." I was having ovaries monitored by ultrasound and CA 125 because, frankly, I wasn't ready to go into full blown meno. When my CA 125 took a big jump last month, though, it scared me. Had my ooph 1.5 weeks ago and I have to tell you, I am doing GREAT. I literally feel better than I have in 3 years. I don't know how or why- maybe being on Tamoxifen helped the transition? My onco is now debating whether I need any meds at all as I am extremely physically active. If joint pain from AI's slows me down, then maybe it would be a wash. I just wanted you to know that you have to go with your heart. Do your research and go with what feel right.

  • LM070917
    LM070917 Member Posts: 323
    edited January 2016

    Hey Tshire,

    I'm in a similar position to you, although I am at a higher risk of recurrance. I recently spoke to my oncologist about hormone therapy and she was advised that I am to go on the default- tamoxifen. However, I've also done my own research and read about the soft trial. I'm definitely leaning towards aromasin and ovarian suppression over tamoxifen, esp with the chances of recurrance being1 in 3 with tax and 1 in 6 with aromasin and ovarian suppressor. I've heard the latter is more effective in young women, who have a different tumour structure to older women. I will definitely be bringing up this with my oncologist on tuesday. I'm already on zoladex (ovarian sup) during chemo so used to the hot flushes and other menopause S that come with this drug. For me reducing the risk of recurrance is more important than dealing with side effects. I'm 34

  • Stephmoen
    Stephmoen Member Posts: 563
    edited January 2016

    I just wanted to put it out ther I am 30 and I had oopherectomy November 24 and have been on aromasin for over 2 months had 1 Lupron shot before surgery which wasn't fun very sore for weeks from it.. I have to say I have very minimal side effects my fingers feel achey at times but I take a lot of supplements that may help..I am happy with my decision!

  • Kessa619
    Kessa619 Member Posts: 80
    edited January 2016

    SoCalGrl, were you given a choice of doing chemo? What tipped the scales for you? I have an 18 oncotype and my MO was initially in favor of chemo, then suddenly ambivalent, suggesting that it would do little good for luminal A cancer like mine. Just wondering how you made your decision as I am gripped by indecision right now. Incidentally, I am also a SoCal girl.

  • rozem
    rozem Member Posts: 1,375
    edited January 2016

    I did tam...then my period came back and I was shut down for 2 years...went off, periods returned...back to the shots. Tried the AIs and failed miserably! all told ive been on the shots for about 3.5 years - the SEs weren't terrible - I really don't feel much better being off of them since I think I am finally in menopause as I stopped the shots in June and no P.

    Hoping im in menopause now and will give the AIs another go

    diagnosed at 42 - just turned 47

    my MO is all for OS in younger women B T W

  • SoCalGrl
    SoCalGrl Member Posts: 105
    edited January 2016

    Kessa619 - My MO recommended chemo because of my Oncotype score. (I go to UCSD Cancer Center in Vista.) My score fell into the intermediate area so I probably could have gone either way, but she told me that the chemo I was going to have was "chemo lite" and the regimen is tolerated very well, especially due to my age. I also considered my mitotic rate and Ki67 score when making my decision so that might be something for you to look into. I really didn't want to do chemo and was leaning towards declining it, but ultimately decided that I wanted to do everything possible.

    My MO was right - the chemo was manageable. I just felt like I had the flu for a few days after each treatment. If you have any other questions, feel free to PM me. I'm guessing you're in San Diego, hence the 619 name so we're pretty close. :)

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