Women on Ovarian Suppression + Hormonal Therapy Unite!
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In January 2021 I hit my 5 year mark on AI (Aromasin) and Lupron injections and trying to figure out next steps. My MO wants me to continue on AI for 3-5 more years. I have experienced significant bone loss and will need to start Prolia soon. I asked my MO to determine if I could stop the Lupron injections. I was 46 and premenopausal at diagnosis, but have not menstruated since 1st chemo cycle 6 years ago. She agreed to stop Lupron and start measuring hormone levels with FSH and Estradiol testing for 9 months and then make new determination, but said it might not be conclusive. I asked if I could just switch to Tamoxifen (due to bone loss issue) and she still recommends staying on AI b/c of elevated oncotype score at diagnosis. It seems there is no good way to determine when I become officially in menopause - my mother did not finish transition until 56 years old. (I'm 52 now).
Has anyone had any information on how it gets determined and re-categorized as menopausal. I cannot remain pre-menopausal forever (even though that seems to be the standard that the doctors use for all breast cancer treatment).
Thanks
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Hi Amy, what was your oncotype? I had cmf also. Do you go to Sloan, they like cmf? Also they recommended I do Lupron and AIs instead of tamoxifen. They were my second opinion, I went back to local dr. I got my ovaries out to eliminate Lupron and unknowns like your experiencing. Not sure if it was right decision, I think it was, I’ve been struggling on AIs since June. I did have Lupron for 3 months. I’ve tried all of them. I’m just recovering from diep surgery and started letrozole. Hoping it’s better than the other 2. I’m scared to go to tamoxifen because I heard may not work for ilc.
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Fair point, Amy. I always hear and read that the estrogen testing is so unreliable. Not really sure why that is. My treatment plan was pretty much....you take the shots until you want the oopherectomy. I just dove in and never did the shots. I got an ooph/hyster. No regrets, btw. It was a good choice for me. I was 43 at diagnosis, though. That would have been a lot of shots.
JRNJ--I've been on letrozole since August and no problems here. Hoping the same for you!
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Amy, if I was you, I would check for a second opinion if you need to continue lupron+AI for over 5 years since you are such early-stage 1A without any node involvement. Since you live in NY, can you go to MSK? I don't know why some MO recommend early stages who had surgery, chemo, and radiation to continue the treatments longer than 5 years.
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To those who replied to me. I'm at MSKCC.
Had lumpectomy, CMF, and radiation. Oncotype 36 but no lymph node involvement and just slightly bigger mass than lowest. My MO said at least 3 more years of AI. I had some bad side effects in 1st 6-9 months but they've gone away.
Just trying to figure out the menopause thing and the Lupron injections. And the bone loss issue.
Will keep you posted.
Amy
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I removed my ovaries because I couldn't handle lupron shots. I had 4 Lupron injections until I made the decision for oophorectomy. I didn't feel myself while under Lupron and I am glad I had my ovaries removed because 2 weeks after the surgery, the pandemic started and I am not sure if I could have gone to the hospital for lupron shots. Worked for me. However, if you have no problem with lupron+AI, you can keep doing it for another 3 years. I asked several doctors why do we need ovaries after menopause, and I didn't get any straight answer. What else helped me in my decision is that ILC tends to go to ovaries.
Regarding bone density. I was recommended Zometa to reduce the recurrence risk and as a bonus, strengthens the bones.
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amyfsw,
I just started Year 6 of Zoladex + Aromasin in February. Last year, I took a Zoladex vacation, and my oncologist tested my blood for estrogen. I was making plenty of estrogen, so I'm back on the Zoladex. Yes, I've suffered bone loss, too. I went from being borderline osteopenic to full-blown osteoporosis with a high chance of bone fracture. However, since I've been on Prolia, my bone density has improved and I'm now osteopenic again. So, Prolia works.
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amyfsw, I think monitoring your hormone levels with your MO is a good idea.
I had a bit of a different situation, and it's true that it's a gray area, but you can still tell a lot from testing hormone levels regularly. I was solidly premenopausal a few years ago in my 30s, but chemo knocked my ovaries into postmenopausal territory for quite a while. My MO monitored my hormone levels and started Zoladex when my hormone levels started to creep back up. My point is, when my hormone levels did start to rise, there was nothing sneaky about it - it showed up in my bloodwork, and then we promptly shut my ovaries back down. I think it's a reasonable course of action for you to monitor your hormones and see what happens.
Also, maybe it would help to be referred to an endocrinologist or another specialist doctor who can help navigate this gray area with your MO. Meanwhile, Prolia or other similar drugs might really help you too. Best wishes to you.
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Due to Lupron's rising cost and shortage, I am asked to consider to switch to Zoladex. Have any of you been on both Lupron and Zoladex? If so, could you share your experience with both, and the pros and cons of each medication? Thank you in advance.
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I am also asked to consider to switch to a higher dose of Lupron: I am currently on the 3.75 mg monthly injection; the MO is suggesting 7.50 mg monthly. What are the possible side effects with the increased strength?
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Hi ladies, I am getting close to be on lupron for 5 full years. My oncologist is considering let me stop lupron and just continue to take Aromasin for another 2-3 years. She believes my ovaries have been damaged permanently from being on lupron for so long. Have you guys known anyone being on OS for over 5 years? I do want to be on OS + AI as long as possible. Thanks
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Hello,
I haven't posted on here in a while but Im up due to some insomnia lol I figured hopping on here would be nice. I saw two questions that I could possibly help answer:
Savingrace my oncologist informed me that I could possibly be asked to switch to Zoladex due to the shortage of Lupron as well, however I was able to get monthly Lupron injections instead. Since then my side effects from Lupron have decreased due to the low dose. See if switching to monthly can work for you. Even if you switch to Zoladex I think its safe to say with the monthly dose there could be a a decrease in side effects. Quarterly shots are nice to save time but listen to your body, Im not sure what your side effects now but there could be a positive side to a lower dose regardless of which drug you choose.
stephphilosophy00 I too am approaching year 5 in September, congrats to us!
This past week I had the conversation with my oncologist regarding possibly getting off of Lupron and Arimidex for other options. Im mainly wanting to get off to give my body a chance to rest and assess my fertility. Id love to freeze some eggs I wasn't able to do it before treatment. However Im not sure what the implications of 5 years on Lupron has really done to my ovarian reserve and function. Did your Dr. give you any data that shows/supports his belief that you have permanent damage? Maybe consider seeing a fertility specialist too just to have a conversation about ovarian function and reserve. Ive been told that Lupron has a protective element, on the flip side I had a fertility specialist also tell me she has had patients who's ovarian function has decreased/been lost due to long term Lupron use. It feels like a bit of a crapshoot sometimes with the topic of fertility but Im hopeful.
There are a few fonts on here who have been on Lupron + AI for 5+ years, Ive seen a few post from time to time.
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hi Ladies, I was wondering if anyone had experience with... being on Tamoxifen for a while, then due to SE, having to shift: starting Lupron shots and transitioning to an AI.
I had multi-focal IDC, oncotype: 11, ER/PR+, HER2- and I was diagnosed in 2017 at age 44. I had just completed IVF which I think caused the BC. Had a unilateral mastectomy. I am now almost 48, was on Tamox for 4 years and just got monster ovarian cysts. I was ordered off Tamox to see if the cysts would shrink. They did. Now, Onc would like to try Lupron for 3 months and the re-evaluate (presumably see how I do on Lupron? Add back Tamox? Add in an AI? Do an oophorectomy and then go back on Tamox? or an AI?)
I was wondering if anyone else had experience with this crossroads and what did you do? Any advice?
Lots of love to you strong sisters.
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hi!! I am at the same crossroads now - wondering what you did. How are you doing? xoxo
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Hello. Brand new to this site. I had BMX 3/2020, 1 positive lymph node, 5 weeks radiation therapy. I have been on Tamoxifen 11 months and my darn ovaries will not quit! My MO wants me to begin Lupron, but I am leaning towards oophorectomy/hysterectomy as I was also recently diagnosed with Rheumatoid arthritis. I am very worried about the joint/bone pain side effects of Lupron (among other side effects) and feel surgery may be my best option. Anyone out there in a similar situation? It looks like there are a few posts of women who started on Lupron and then decided to go with the surgical option due to side effects. Thanks!
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SFColorado, Welcome to our Hotel California
. I was one of many who decided to go for an oophorectomy in order to avoid Lupron shots. I regret not choosing oophorectomy and hysterectomy at the same time however, here I am a year later. I do believe I did the right decision not to have Lupron, I hated that injection. It messed up my brain and also, it was painful. Removing the ovaries creates a fast landing into menopause and it gets confusing what symptoms are menopausal and what are SE of AI. But you get used to the new person you become. Good luck! 0 -
Hello!
I've been on Zoladex + AI (Aromasin) for over 6 years, and my current target is 7. stephilosophy00, you could try an OS holiday and have your hormone levels checked to see if your ovaries are in fact damaged. I took a Zoladex holiday last year, and we discovered that my ovaries were still producing quite a bit of estrogen. So, back on the Zoladex it was. My oncologist has actually suggested getting my ovaries removed for the long term, but I'm still thinking about it.
Jinx27, I hope your ovaries will still work after you quit OS + AI! I hope you get a chance to freeze some eggs.
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I’m glad I found this. I need to make some tough decisions in a couple of months and need some of your experiences. I had been on Tamoxifen for 3 1/2 years until we found out I had liver damage from fatty liver which turned to NASH and some permanent damage. I started Zoladex and was to start a new med after 3 months. At 2 1/2 months after starting the Zoladex, I was pulled off due to blood pressure issues it was causing. I passed out from low pressure and then ended up in the ER with super high bp. They are giving me 3 months off and then they want to try me Lupron. How many of you have tried these suppression drugs and then had the ovaries taken out? I just want the ovarian surgery and not do those meds but they say that they need to see if I can handle it. Your thoughts on this ladies will help me make an informed decision. Thanks.
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I had 4 months of Lupron injections before I decided to remove the ovaries. One of MO recommended removing the ovaries and another GYN surgeon reinforced the idea since the ILC type of cancer tends to go to ovaries. I am done having kids, and I removed the ovaries without any regret. The surgery was very easy, the scar looks like a healed paper cut of less than 0.5in. No regrets at all! I'm sure you know that once ovaries are out, they can't get back in, in case you decide to have kids.
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Im due to get my ovaries out on Friday because I just didn't want to deal with the Zoladex injections any longer. My cancer is 100% estrogen driven, and I swear I get almost PMS-y at the end of the month before the next injection is due (cravings, mood swings, etc), which makes me worry how suppressed these things really are through the whole month. I don't have much of a choice here, so let's just get them out,rather than waste any more time once a month of this one injection, or feeling constrained that I can't plan anything without being aware as to when the injection is due. This isn't one you can just let slide for a week or two. My BRCA1 came back a surprise positive too so all of a sudden it became imperative to do the surgery due to high elevated OC risk.
I started asking about the surgery after a year on the injections as I knew how menopause was working for me and they could see blood results, etc. Im rather glad I had that chance to test drive menopause and get comfortable with that, and the rest of this cancer malarky, before worrying about fixing bits around the edges. Besides, with Covid there was no chance at surgery happening anyway.
You may want to discuss at least getting the surgery planned and agree to dependencies so everyone is agreed and on the same page about how long to see if this is working and how they will determine you are ok to go forward with it.
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Thank you LillyIsHere. I am a little scared to find out the person I will become without all my estrogen, but I will find out soon enough! My MO was surprised that I was leaning towards surgical suppression, but I am at the point where I feel like no sense in delaying the inevitable! Even though I am 50 years old, my ovaries keep churning out that estrogen. I appreciate your advice:)
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Curious whether any of you had your cycle come back after stopping OS. I had my last injection December of '19 after 3 years and...it's baaaaaaack. My MO wants to see me and check hormone levels, but I would also love some advice from someone who has been down this road. More Lupron? Oophorectomy? Tamoxifen? Wondering what happens next.
Grateful for any wisdom you have,
Yuuki
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Yuuki, did you use OS with AI or Tamoxifen? What cancer type and grade did you have? I did chose Ooporectomy because of SE of Lupron.
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Hi Lilly,
I used OS with AI. I have had some fairly severe joint pain and hoped it would ease off a bit after stopping the Lupron, but I have to say it made very little difference for me. I am seriously considering oophorectomy - what was your experience? How are you faring on Femara?
I was diagnosed with DCIS in late 2000, and because I was young for that sort of thing I had a double mastectomy with implant recon and figured I was done. It was a high grade comedocarcinoma, but not much other testing was done at the time. In 2016 I went in for a routine annual check and was surprised with a 12mm Grade III, 99% ER+ invasive tumor that had started somewhere in a bit of subcutaneous fat left over in the breast. Hoping that finding out I'm actually still pre-menopausal is the last curveball I get!
Y
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Yuuki, it sucks to have recurrence with DCIS especially after BMX. How long have you been taking Lupron shots? I only had 4 times and I hated it since the beginning. In my case, I had to be in some kind of OS until natural menopause. I refused tamoxifen because of blood clots and I also read that OS+AI works better. There is no testing when natural menopause starts if you are under influence of Lupron. Also, ILC likes to go to ovaries so my decision was easy. I felt worst with Lupron than oophorectomy. Surgery and recovery are very easy.
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Hi everyone,
Due to the lupron shortage I was able to get the 3-month lupron shot. I love that it is every 3 months but I worry that it won't work as well in supressing the ovaries the last few weeks. Has anyone had their estrogen levels checked toward the end of the 3 months? My uncle is also taking this for his prostate cancer and his blood sugars get better toward the end so he thinks it's not as effective toward the end.
I had been on Zoladex before this but wanted to change due to my diep flap surgery. I also found it traumatic to have the nurse make the injection in my stomach. I haven't noticed a lot of side effects from either one. I do get more hot flashes with the lupron though. I think my stiff fingers are due to the AI.
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Hi Divergent,
I have had the 3-month injection a couple of times and it worked fine for me, but my MO is generally reluctant because of the exact issue you describe and prefers the monthly shot in a perfect world. Since you are on the 3-month dose, perhaps your MO will draw for hormones if you are concerned. Hope it's a good solution for you.
Yuuki
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Hi Divergent. When I was on OS+AI, they started out giving me the 3 month shot, and I ended up experiencing the problem you described. It didn't sufficiently shut down my ovarian function. I got a period just six weeks after one of the 3 month shots and was very shocked. They did an estradiol test, and my estrogen was very high despite the Lupron. They had to put me on the one month shot to avoid this issue. The oncologist at Sloan Kettering who gave me a second opinion told me that she only uses the one month shot so she can be more sure that the patient's ovarian function really is suppressed.
I ended up stopping OS due to unbearable side effects and am now on drug similar to tamoxifen.
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Thanks orangeflower and Yuuki. That's helpful to know. Too bad we can't get shots less often. I wouldn't mind one every six months!
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I am having a really difficult time lately with the mental part of getting the injections. I had been on Lupron since 2016, every 3 months and now they have switched to the Zolodex. I am experiencing more SE with the zolodex. They said that Lupron is no longer one of the approved drugs to be used for Breast Cancer. I've been on it for years and all of a sudden? The nurse did say she could get my insurance to approve monthly Lupron injection. I don't want monthly. I can't afford it. I'm just getting my thoughts out. It's really stressing me out. Another zolodex injection scheduled for today.
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