Premenopausal women: Ovarian Suppression plus Tamoxifen or an AI

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eloqui
eloqui Member Posts: 65

Hi,

I was diagnosed with breast cancer at the age of 26 and am now trying to determine hormonal treatment. My tumor is almost 100% ER and PR+.

I was going to do Lupron to suppress my ovaries, and add on either tamoxifen or an aromatase inhibitor.

Is anyone on either of these regimens? How did you make your decision on which treatment to pursue?

I'd really appreciate any and all thoughts on this topic! Thanks :)

Comments

  • Marianna_Jay
    Marianna_Jay Member Posts: 7
    edited September 2014

    Hi, eloqui. 

    I'm so sorry to hear about your diagnosis!

    That is the treatment I am on. Part of what made that decision for me was my oncotype dx (12) and early stage/low grad diagnosis, which you can see in my signature. Supposedly for cancers like mine AI's or Tamoxifen are as effective as chemo with fewer SE. I also have a history of deep vein thrombosis (blood clots), and therefore can't take Tamoxifen, so if I want to take an AI, then ovary suppression it is! I know these drugs have pretty crummy SE even if they're not as bad as some of the chemo regimens, and five years is a long time to commit to, but I wanted to do everything I could to prevent recurrence or new primary cancer. I opted for a BMX, and after going that route, I decided I wasn't going to wimp out on the adjuvant therapy. I have made a promise to myself that if the SE become so awful that I can't function, then I can stop the drugs. So far, truthfully, they are not that bad. Hot flashes, yes, some joint and muscle stiffness, yes. I had a bone density test to get a baseline to watch for osteoporosis. In the meantime I'm doing everything I can to minimize those: my MO put me on calcium, vitamin d, biotin, and CoQ-10 supplements, plus recommended vitamin e for hot flashes. My GYN recommended evening primrose capsules for hot flashes too (one of the few natural remedies that's not also a source of estrogen). I'm working out with weight-bearing exercises (walking, yoga, strength training) at least 5-6 days a week. I am eating mostly a plant-based diet, etc. So far, all of these things are helping me feel pretty good.

    It is so hard to make decisions at every stage of this stupid bc "journey"! I know I really agonized over this one. I'm 42, so not as young as you, by far, but it still was very upsetting to be thrown into instant menopause. In some ways I grieved more about that than the surgery. Anyway, I hope you get some good answers from folks here and that that will give you some clarity in your own decision-making! :-)

    MJ

  • Annette47
    Annette47 Member Posts: 957
    edited September 2014

    I think that part of it depends on what your initial recurrence rate (both of distant and local recurrence) is, and how much that would be lowered by the various options.   Ovarian suppression/removal and an AI probably provides the best protection, but also comes with the most complications.

    For me, my distant recurrence risk is tiny - I'm more concerned with local recurrence or new primary, so Tamoxifen makes the most sense from a cost/benefit point of view, especially since I have no complicating factors that would prevent me from taking it.   Ovarian suppression/AI wasn't even offered to me.  I was 45 at diagnosis, by the way, but still most definitely premenopausal.     I'm sure age affects the calculations as well - personally, I wouldn't want to be thrown into menopause at your age, but your recurrence risk may be correspondingly higher so your best bet is to discuss this with your medical oncologist.    My cancer was >90%+ for both ER and PR

  • ChristyBird
    ChristyBird Member Posts: 1
    edited September 2014

    I am similarly struggling with whether I should have an oophorectomy + AI, or injections + AI.  I am 41, premenopausal, done with having children, and just sad about losing my vitality (separate from fertility; and I know: whether I remove my ovaries or have injections, I'll experience menopausal symptoms).  I am positive for the prothrombin gene mutation, so Tamoxifen carries higher risks of blood clots for me.  I am Stage 1, ER +, Her2Neu+, BMX with reconstruction, finished taxol, still doing herceptin.

    Anyone been in this boat?  Anything you wish you had considered when making your decision?

  • kaos1
    kaos1 Member Posts: 10
    edited September 2014

    Hi eloqui, so sorry that you were diagnosed at such an early age.  I was 44 at age of diagnosis, my onc recommended Lupron and tamoxifen (10 years).  I actually skipped the Lupron and am doing an oophorectomy next week since the BRAC1 gene runs in my family. The good thing about Lupron is that it's temporary and you can stop if the side effects are severe.  Regarding the tamoxifen, I've had an easy time with it,  don't let the fear of side effects scare you - it's definitely peace of mind and the 50% recurrence prevention is worth it!  Good luck with your decision and treatment. 

  • ChemicalWorld
    ChemicalWorld Member Posts: 172
    edited September 2014

    I am on this treatment plan, first Tamoxifen the past few years, now more recently Lupron added.  I go for once-monthly shots because I wanted to ease into the whole thing and have a back-out plan if I really couldn't tolerate it.  I was 40 at diagnosis.

  • MaxineO
    MaxineO Member Posts: 555
    edited September 2014

    I am premenopausal, diagnosed at 38.  

    I was on tamoxifen + ovarian suppression for two years, then switched to an AI (arimidex) + ovarian suppression.  My MO wanted to do the switch regimen because of some study on effectiveness.  As far as side effects, the ovarian suppression (lupron or zoladex) has the greatest impact; being thrown into menopause is quite a shock to the system.  I found more leg cramps on tamox, more joint pain on arimidex.  You can ease side effects in many ways, but they can be rough for lots of women.

    If you aren't BRCA+, suppression does allow the option of stopping...as kaos1 pointed out.

    Menopause will not be fun, but you have LOTS of estrogen coursing through your body at your young age.  Best of luck in your decision. You will make the right one because it's yours.

  • LakeGirl2
    LakeGirl2 Member Posts: 68
    edited September 2014

    ChristyBird, I have a genetic blood clotting mutation and conferred with a hematologist before going on Tamoxifen. He gave me the OK. I have never had any clots, so he didn't feel that I was necessarily at a higher risk. I do take a baby aspirin along with the Tamoxifen. I am premenopausal but had chemo and have not had a period in almost 18 months although my MO and GYN both felt it would come back.

  • eloqui
    eloqui Member Posts: 65
    edited September 2014

    Thank you all for the opinions! I need to make a decision by the end of the week. I am leaning towards the AI. But I'm concerned that over time, and at my young age of 27, the ovarian suppression shot may not completely suppress the ovaries. If that happened, then taking the AI might actually lead to adverse effects (ovarian stimulation). Anyone have any input on this?

  • mish
    mish Member Posts: 1
    edited September 2014

    This is my first post to this site.  I was diagnosed at 37 in November 2007 with IDC followed with chemo, Herceptin, Femara. 

    I had my ovaries removed in 2009 by strong urging of my oncologist.  None of my doctors let me know what kind of mess I was going to be walking into.  I did it only to greater my chances of not getting ovarian cancer, and I did it quickly before I changed my mind.  My emotional state after that was awful, and I was not prepared for it.  I tried different antidepressant medications to help me deal with everyday life.  Of course, medications take time to go through and I didn't even know if it would help.  Time went by and finally I had a hysterical breakdown at work in 2011and couldn't stop crying.  My oncologist put a medical leave in for me until I could get myself together.  I was very tired all the time and that made everything worse because I couldn't deal with anything.  I was diagnosed with a few sleep disorders and have been taking Dextroamphetamine (similar to Adderall) since then and am currently taking 7 other medications ranging from medications for my thyroid, acid reflux, anxiety, etc.. still to day.  I am so scared to come off any of them even today.  My work was not sympathic at all.  They started me back at the front desk.  I had been there for 12 years at that time.  What I realized is that when people cannot see you physically sick anymore and are not familiar with cancer, they have no sympathy.  If I could go back, I probably would have delayed having my ovaries removed.

  • eloqui
    eloqui Member Posts: 65
    edited September 2014

    Mish- I'm sorry to hear about the difficult time that you've had. Surgically removing any part of your body is a big decision. Thanks for your perspective.

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