Skipped Lupron. Bad idea?

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HeatherLS
HeatherLS Member Posts: 29
edited June 2014 in Young With Breast Cancer

I have been on Lupron for a few months and I HATE it. I don't like the depressed, snappy, estrogen-less person it makes me. I was supposed to have my shot last Thursday - I skipped it.

 My onc did not suggest the Lupron - I did. He thinks *maybe* I should have an ooph because of the possible ovarian cancer risk. I am BRCA1/2- (and BART-) but probably BRCA 3/4/5 + judging by my extensive family history.

The tumors I had were 99% ER+. I am not sure that the SEs of no estrogen (including osteoperosis, heart disease, etc) are worth the benefit - but I really don't know what that benefit is....I have no %s that I can find. I also know the tumors had no response to chemo.

 What do you think....am I handing myself a death sentence by not having an ooph or some other type of ovarian suppression??

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  • MustangIA
    MustangIA Member Posts: 177
    edited August 2011

    Heather - I debated whether or not to respond here.  I'm probably not the best person to answer this as I did nothing to shut down my ovaries as I was BRCA- and I, too, have a family history of both breast and ovarian cancer - so I'm with ya - probably a yet to be discovered gene for me.  I ended up having them removed via complete hysterectomy due to a cyst, and cancer was found.  I don't tell you this to scare you at all, I do not regret my decision not to do it earlier.  While I did recur in my ovaries, it is not a very common place for recurrence.  The decision to pull the ovaries has other side effects that at 32 need to be considered.  There still isn't much data on the actual benefit of ovarian suppression which is why you can't find it.  I'd suggest a candid discussion with your onc and if you are truly worried about you family history, consider talking to a gyn onc.  Love to you. 

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  • Beeb75
    Beeb75 Member Posts: 325
    edited August 2011

    Hi Heather,

    I can't speak to the gene stuff -- and possibility of future ovarian cancer, though I think I've heard that even for BRCA+ women, they recommend ooph at around age 40...so maybe you have some time to think about it.

    As for the ER+ BC, tamoxifen should do the trick. I think the evidence hasn't shown that tamox PLUS ovarian suppression has any significant benefit over tamoxifen alone (or OS alone). But one or the other is essential.

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  • HeatherLS
    HeatherLS Member Posts: 29
    edited August 2011

    Thanks, ladies.

     Mustang - I have an appt with a Gyn Onc next week at UCLA. Hopefully he will have some insight. ETA: Thanks for responding, Im glad you did :)

    Beeb - I was once told by a Med Onc that if I wasnt have hot flashes, etc, with Tamox I needed to find out why because it possibly "wasnt working." I dont have many side effects from Tamox (except maybe higher tryglicerides and higher blood pressure) so I was a little concerned. I realize, though, that the jury is out on whether or not Tamox side effects mean anything.

    Hopefully next week I'll get some good info!

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  • lisa_loves_alice
    lisa_loves_alice Member Posts: 33
    edited August 2011

    Heather, I am BRCA negative with no family history, so slightly different, but I decided against OS with a 99% ER+ tumor (and 98% PR+ / Her2+).  I am doing Tamoxifen.  And in fact I am probably going to go off of Tamoxifen in two years to try to get pregnant which both my oncologist and a second opinion from the mayo clinic said is okay. 

    When I discussed OS with my oncologist, he said the results from the SOFT trial don't seem to be showing a benefit to doing both.  They had trouble recruiting for that study, so results have been slower to come than people hoped, but he thinks if there was something to see it would be apparent by now.  

    For what it's worth, my second opinion doc said there was no reason to do OS, but if it were him, "he would probably do it if you could tolerate it just to be safe."

    I decided at least for now that I'm sticking with Tamoxifen.  So anyway, I have no answers but wanted you to know you weren't the only person not doing OS.

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  • HeatherLS
    HeatherLS Member Posts: 29
    edited August 2011

    Lisa - I cannot find any prelim results from the SOFT trial at all - and in the last couple of weeks I have spent hours searching. Any ideas? I will ask the onc at UCLA but I am curious if there is anywhere I can find them....

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  • rachel21mel
    rachel21mel Member Posts: 51
    edited August 2011

    Hi, Heather. I'm just thinking that a gyn onc will be likely to recommend ooph. I saw one in the spring, and he wanted to do an ooph. I was in the process of changing oncologists at the time, so I waited to get the opinion of my new oncologist. She did not recommend ooph for me but recommend 5 years of OS. I decided to wait b/c I am still young and wasn't completely sure (I'm 32 as well).

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  • DiDel
    DiDel Member Posts: 1,329
    edited August 2011

    Heather I am 95% ER+ and I did not opt for either treatment. I take Tamoxifen. My BS wanted me to consider the ooph or lupron by my onc (who specializes in gyn/breast cancers) told me he thought there was no sense in doing either right now. he said I was too young...GOD Love him..I was 42 at diagnosis. I see you are 32?? That seems awfully young to put someone in menopause. My onc said lets keep a close eye on you...take the tamoxifen and when I am closer to menopause age we would reconsider further treatments.

    I can only imagine how you feel. I was in meno from chemo and it was the worst feeling every joint in my body ached.. I feel for you. Talk to your team of docs and see how they feel about you taking a break from the lupron.

    Hang in there!

    Diane

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  • Lauren3
    Lauren3 Member Posts: 289
    edited August 2011

    I was 88% ER+ and tried Lupron for 11 months and finally had to stop.  It was making me crazy and miserable.  My onc is ok with me not having the ooph for now.  I got a second opinion and she said she probably wouldn't have even put me on the Lupron to begin with so that made me feel better about going off.  I am BRCA negative also. 

    Good luck with your decision!

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  • HeatherLS
    HeatherLS Member Posts: 29
    edited September 2011

    So, I met with the Gyn Onc at UCLA on Thursday and he said that there really isnt any conclusive evidence either way. So, if I am paranoid about it, take it. If I am on the fence and really don't like Lupron, then don't take it. So....I'm done for now. I will wait for updates from the SOFT trial and ABC trial before I decide to do anything permanent. Thanks for sharing your experiences ladies :)

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