Women on Ovarian Suppression + Hormonal Therapy Unite!
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Hi everyone,
I'm about a year into my “cancer adventure" and brand new to this community. I could use some advice about a possible switch from Tamoxifen to an AI + estrogen suppression.Background: I'm pre-menopausal (just turned 50) and have been on Tamoxifen for 9 months so far, following Stage 1 IDC (ER/PR+, HER2-) and a double mastectomy + reconstruction in October 2021. (Oncotype score of 9. No chemo or radiation recommended as long as I took Tamoxifen.)
My issue at the moment is my mental health. Taking Tamoxifen required me to discontinue the Lexapro/Wellbutrin combo that had previously really helped me manage anxiety/mood issues, pre-cancer. (My oncologist said no Wellbutrin because it would undermine Tamoxifen's efficacy and no Lexapro because when taken with Tamoxifen it can cause rare but serious heart issues.)
So I switched to Effexor when I started taking Tamoxifen. I've had some weird side effects (sensitive skin and severe itchiness, mostly hands and feet, but sometimes elsewhere) but I don’t know what caused that (Tamoxifen? Neuropathic issues, post-surgery?) but thankfully, thats mostly tapered off.
The issue is that Effexor doesn’t work for me. It took me months to realize, but it actually amped up my anxiety/rumination, even at a low dose. So after six months, I switched to its sister drug (Pristiq), which has been the same, maybe even a bit worse. This has made it really hard to adjust/cope with post-cancer life. Basically, I get hung up on everything, am beyond irritable, and generally don't feel like myself.
So my oncologist suggested switching from Tamoxifen to AI + an estrogen suppressor (until blood tests show I've hit menopause), if my priority is to get back on Lexapro + Wellbutrin. He was very matter-of-fact about making the switch - said I'm average age for menopause anyway, so its not a big deal. His take is that I may be speeding up menopause by a year or two, but it wouldn’t be like doing it at 35 or 40.
Does anyone have experience with this? For some reason, I'm a little freaked out about taking the extra step of estrogen suppression (is this what they mean by “medical menopause"?) but I'm not sure why, exactly. Tamoxifen has already been interacting with my hormones, and it's been manageable. So maybe my hesitation is just my untreated anxiety talking? (Hence my need to get back on Lexapro? Lol.)
Another option might be to pause Tamoxifen for a few months while I first ramp back on Lexapro and Wellbutrin and THEN start an AI + estrogen suppression. My hope is that once my anxiety is better managed, the treatment process will be easier. (Or is it a bad idea to skip Tamoxifen for two months??)
I’d welcome any insight or advice! (Including if this is something I’d be better off posting on a mental health related board.)Thanks, all!1 -
Hello!
I am almost 7 weeks post BMX, and just met with my MO to discuss treatment options. I'm pre-menopausal, and just turned 50 in March. My Oncotype score was 10, so no chemo needed. We discussed pros and cons of tamoxifen or ovarian suppression + AI. I've had issues with heavy periods, uterine fibroids and polyps, and an increase in the build up of the lining of my uterus which was treated by a D&C + IUD placement 4 years ago. She wants me to get the IUD removed, which I'm doing next week. With my gynecologic history, we decided tamoxifen might not be the best place to start. So, I will be starting with Lupron injections (monthly) next week. She wants me to do 2 rounds, check estradiol levels, and then will add the AI (she didn't tell me which one she would pick). Was just hoping for some guidance about side effects..... are they manageable, awful, etc. I'm already experiencing some peri-menopausal symptoms (night sweats, sleep disruption) but the thought of being thrust into menopause is a little frightening! I appreciate any insight you can offer!
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dani_p, don't borrow the worries. There are women who have been doing OS+AI for years with minor SE and some other ones with lots of SE. In my case, I had a difficult time with Lupron injections and after 4 months, I decided to remove the ovaries. I did it for a few reasons, the most important one was the SE of Lupron, second, I had a difficult time going every month for the injections. I found them painful but I don't have much fat and it may be the reason. Also, I was peri-menopausal and it was a matter of time to go to natural menopause that MO couldn't figure out once you are on Lupron. You should give it a try and see how it goes. Let us know and good luck.
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Lillyishere, that's good advice. I was actually thinking about trying it for a few months and if I tolerate it (i.e., tolerate the menopause), I might consider the oophorectomy. My MO did mention surgical removal of the ovaries and my first thought was "no way," as I'm only 7 weeks out from my mastectomy, I have my exchange surgery in November, and the thought of another surgery was exhausting. I'll see how it goes. Luckily I work very close to my MO office, so I can get the shots at my lunch hour.
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I'm on Year 8 of OS (Zoladex) + AI (Aromasin). Every time I take a Zoladex vacation, tests show that I'm still pre-menopausal, even though I'm 55. For those of you considering this regimen, I'd say that my experience has been OK. The worst side effect has been osteoporosis, which meant going on Prolia. Prolia has improved my bone density such that I'm only osteopenic now. Another side effect was that OS+AI made me moody, which was fixed with low-dose Celexa. Only two more years. Only two more years. Only two more years.....
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Wow. Thank you everyone! This is very helpful - both hearing your doctors’ recommendations and your experiences with SEs + the perspective that this is not a “permanent” decision. We can try something and see what happens. If it doesn’t work, we can try something else.
Dani_P - our diagnoses and treatment plan are almost exactly the same. I’m just 10 months or so ahead of you. I hope you’re doing well! Thanks for sharing how your oncologist handled the decision. Sounds like you got better advice and care than I did. Mine went straight to tamoxifen and never even discussed OS + AI - no pros and cons. Annoying. He also didn’t ask for my gyn history, which does include fibroids. (I didn’t realize that was a factor to consider. Why?) And of course tamoxifen is what forced me to change anxiety medications, which has made everything else much harder.
Sooooo … I’ve scheduled a second opinion mtg with a new oncologist - will see her next month. I’m hoping she will consider all three parts: cancer prevention, my mental health, and my gyn history. Fingers crossed.
Thanks, all!
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djk - I'm not sure that the fibroids or the polyps necessarily concerned my MO. I think the thing that really bothered her was that I had already had the excessive build up of the lining of my uterus requiring D&C, which is a potential risk with tamoxifen but not with the AIs. One thing I think is interesting is that I am also on Lexapro and my MO never said anything about it being a problem with tamoxifen! Maybe we didn't get far enough for that to come up, but like you I would have been nervous about making a change with that medication.
I get my first Lupron shot tomorrow and get the IUD out Friday morning. To be honest, I'm more scared about the IUD removal! I was under anesthesia when it was inserted as the gyno did it following the D&C. I've heard it is not a pleasant experience.
I hope you have a better experience with your 2nd opinion oncologist. There's so much to process in all of this and I've been fairly happy so far with everyone that has been involved in my treatment. It's crazy how much has happened in just over 3 months!
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Dani and djk, chemo put me into instant menopause, I did 3 months of lupron and AIs, then got my ovaries out. I have been struggling for 28 months, constant pain and night sweats and interrupted sleep. I am told Tamoxifen is better tolerated but have read it is not good for ILC. So, I'm not sure if lupron, AIs and your anti-depressant will be any better. I was on sleeping pills for 13 years and decided to quit as my anxiety was too high and they weren't working anymore. I am glad I did, but I am tired all the time. I feel that the medications we think are helping use may be causing other side effects and I am trying to minimize. But just keep trying different combinations until you find what works best for you. Hold off on the ovary removal until you feel stable. The surgery is nothing, but the results are permanent. But I don't regret doing it as I did not want shots every month and it seems whatever route we choose we are supposed to minimize estrogen. But you may decide tamoxifen is actually better.
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Hi
I just went to my gyno today. I have been on tamoxifen for about a year and now have an enlarged uterus. It could be fibroids or something else, has anyone experienced uterine fibroids while taking tamoxifen??
Thank you!
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Hi
I just went to my gyno today. I have been on tamoxifen for about a year and now have an enlarged uterus. It could be fibroids or something else, has anyone experienced uterine fibroids while taking tamoxifen??
Thank you!
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I have been on anastrozole and monthly zoladex injections now for 8 months. I have scheduled an oophorectomy in December, but now I am having reservations. I was premenopausal when I started the hormone therapy. I am concerned about the longer term side effects of having the ovaries removed - I will be 50 this year and not concerned about having kids, so that is not the issue. I'm concerned about impact to bones, heart, and mental health - am I making a rash decision?
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Hello Fighters!
I am supposed to start Trelstar injections this Thursday but just received a notice from my insurance company denying this particular drug treatment. Has anyone gone through this and if so, what did your MO do in lieu?
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Hi bcfightr24, I did not have Trelstar, but I unfortunately had to work through insurance issues during treatment. The first step is to ask the insurance company for the reason for the denial. Second, gather information from various sources on how to prepare an appeal.
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Thank you @savinggrace
I spoke with the financial person at my MO's office and was told that they already appealed and the decision was overturn, so I will continue with my course of Trelstar starting tomorrow.
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