Triple Positive and Lupron?
Comments
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Hi all!
I'm almost 6 years out from diagnosis of Triple Positive Stage 2a node negative. I just got my period back last week..after almost 6 years. I went to the Gyno who did a sonogram to confirm that is what it was, and it was for sure my period. Now my oncologist wants to meet with me about pros and cons of Lupron + Tamoxifen.I REALLLLLLLLLLLLLLLLLLLLLY do not want to do Lupron but am I going to have a choice? This is literally my first period and first ovulation since October of 2011. Shouldn't we wait and see if I get another one?
Would love some thoughts?
Thanks!
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Hi melster!
You always have a choice about your treatment. If you don't want to do Lupron, tell your oncologist that you don't want to do it.
Like Lupron, Zoladex an ovulation suppressor (OS), but Lupron is every three months whereas Zoladex is a monthly shot. For over two years, I've been on Zoladex so I can take an aromatase inhibitor (Aromasin). The SOFT study showed that OS + AI was somewhat more effective than Tamoxifen for premenopausal women.
Zoladex has put me into full menopause, and the OS + AI have depleted my bone density to the point where I have osteoporosis. To counter that, I have to take a biophosphonate (Fosamax).
I am seriously thinking of stopping the Zoladex and having my ovaries removed. My oncologist has said that I will be on Aromasin for 10 years, and I do not want to do a monthly shot for the next seven years.
Good luck!
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Thank you for responding! Do you mind me asking your age? I am 40. I was 34 at diagnosis. I also really do not want my ovaries removed.
I have been in peri menopause all this time (yearly hormonal testing has shown this) but I guess my ovaries decided to kick on this last month...who knows if they will again.
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melster,
I was diagnosed at 46, and am now 50. I didn't start hormonal therapy until I was 47, though. I'm getting close to the average age of menopause (51), but my cancer was so aggressive that my oncologist doesn't really want me to take a break from OS + AI to do the tests to determine whether I'm naturally menopausal right now. My old OB-GYN (recently retired) didn't want to take out my ovaries because he says that women who keep theirs tend to live longer.
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Melster,
I do monthly Lupron so I can take an AI due to the aforementioned SOFT/TEXT trial results...I was 31 at diagnosis and am 34 now. Aside from some fatigue and general blahhh for about 2 days after the shot, I don't have many problems with it. I get occasional mild hot flashes but they don't bug me too much (I know some people get them really bad though). You could always try the shots and see if you tolerate them...if you don't, you can talk to your onc about other routes. I know most oncs don't want to take ovaries out too young due to the bone risks and other issues.
I'd talk to your oncologist regarding what they think about waiting a bit to see if your period is really coming back for good.
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So I guess my main question is, ovary suppression is standard of care in pre menopausal women, even triple +? I obviously haven't met with my oncologist yet, but she has always told me that the HER2 trumps the ER/PR+ part of the diagnosis.
I guess I'm wondering if it's even worth me thinking there could be a chance she will let me NOT take the Lupron.
Sucks because I feel the most "normal" I have felt in six years and I dread the conversation with her.
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Melster- I'm so sorry to hear that you are feeling better and that you might then have to upset your system w Lupron! I have been alternating with monthly or three month shots for various reasons. So either can be administered. I've had so many surgeries this year I didn't want another to remove my ovaries. So here we are on monthly Lupron so I can take an AI. But Ovarian suppression plus Tamoxifen was not found to be effective. Edited to add the link
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Falconer, thanks for that link
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Melster,
While the HER2 component is definitely a priority for treatment, the HR-positive factor must not be overlooked, so yes I believe the anti-hormonals are still very very important in preventing recurrence. In other words, having all the HER2 treatments in the world won't mean that you can comfortably forgo hormonal treatments, as this is another important element of your cancer. Of course, your oncologist can probably give you more info on this, but that's what I've come to understand.
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magnolia,
Yes I get that. And I've been on Tamoxifen for over five years now with no plans to stop. I just don't want to shut down my ovaries unless absolutely necessary. I do not know many other triple positives that are in this same bind. I literally had no period for almost six years. So I don't know if it's medically necessary to shut down my ovarian function and was hoping to hear from someone that was told it was ok.
Breast cancer is the gift that keeps on giving! Ha!
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Hi there
We have almost indentical stats except I was 42 when diagnosed 48 now
I did OS when my period returned. On and off for 4 or so years because I felt terrible in full out menopause. Tried several AIs and I couldn't tolerate any. So I've been on tam for 6 years with mostly suppressed ovaries
My Onc said that all the SOFT studies followed woman who did AI + OS immediately after treatment. She said they can summize that there would be a benefit for those of us a few years out but that the % benefit is unknown. Hope that makes sense. She said based in the fact that I'm tolerating tam, am at year 6 and was miserable on Lupron she is happy with me continuing on tam (they rather you in something then quitting altogether) It's been over a year since I stopped the shots and no period. I'm thinking of being tested and trying an AI again but I'm closer to natural menopause then you are
You could try the Lupron and see how you feel. That's the good thing, you can test drive menopause. You can stop if you can't tolerate i
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update-- went to onc today...I'm going to get blood work every three weeks for three months to test my hormone levels at different times of the month...then we will reconvene in November to discuss. She said no to oomph but may suggest lupron depending on results. And if I can't tolerate it, she is fine with me just staying on tamox.
So yay. 😝
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That's good news Melster! Thanks for the update.
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Mel..i was diagnosed at 40 (I had been 40 for two weeks!) And I'm triple positive. I had been on Lupron for two years. I am one of the few people I know who went on OS but stayed on tamoxifen. went to see my GP a few months back and was telling her how i was feeling. She said, "you know most of your symptoms could be Lupron related". So I stopped. A few weeks later...it is amazing how much better I feel...but I'm terrified to not be on the Lupron. I see my MO in september. She and my GP are working together to find the right balance between cancer prevention and quality of life.
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