Second-guessing upcoming oophorectomy vs lupron

Poola

This is my first post, ladies. I am 50 and premenopausal. Was diagnosed in August 2019 with stage 1 BC. Had lumpectomy (margins and 1 node taken were clear) and radiation. I started taking tamoxifen in December 2019 and had only 1 side effect. Every month, I had ovulation pain for about 5 days, which I had never had before in my life. The pain got so bad this past July and August, that my oncologist took me off of tamoxifen and we are giving my body a "break" from all hormonal therapy. Even though the chance of my BC recurring is low, I am extremely nervous about not taking anything to make that chance even lower. I essentially have 2 options: Start lupron and anastrozole or oophorectomy. Two days ago, I met with my gyno and told him to take out my ovaries. He was not against doing that, but he did not push that option on me either. My surgery is scheduled for Dec. 10, but now I am wondering if I should try lupron first. I do not have BRCA 1 or 2, but my first cousin died of peritoneal cancer at 52. Therefore, the fear of ovarian cancer is always in the back of my mind. However, there was a history of ovarian and breast cancer on her dad's side, which would not be related to me. I guess by question is this: Should I try the lupron first? I have osteopenia in my hips, which is one reason I decided not to go the lupron route. But now I'm thinking that losing my ovaries will also affect my bones and have other negative effects and that I should try to keep them. So worried and confused! Every time I think I've made the right decision, I start thinking about all of the what-ifs.

ElaineTherese

Hi!

I was 46 when diagnosed, so pre-menopausal. My MO started me on Zoladex (an ovulation suppressor like Lupron) and Aromasin 6.5 years ago. I could have had my ovaries out instead, and then I could have just done the Aromasin. I will only be doing 7 years of this regimen as recent studies have shown 7 years to be as good as 10.

Had hot flashes at first; they faded away.

Regimen made me moody; Celexa solved that.

Yep, my osteopenia turned into full-blown osteoporosis, but that has been reversed, thanks to Prolia.

I have taken a few Zoladex holidays and I'm still not menopausal at 54. But, I'm beginning to think that I'll do 7 years and just not worry about estrogen afterwards. Maybe, it will be nice to have my estrogen back. Maybe, since my cancer was largely driven by an overexpression of the HER2 protein, it's OK to have some estrogen in my life.

95% of my cancer cells tested positive for estrogen receptors, but maybe my cancer is just gone for good. I had a pathological complete response to chemo, and have had clear mammograms ever since.

Good luck! It's a difficult decision to make, but you had a small lump and successful surgery. As you say, you have a small chance of recurrence.

Poola

Hi Elaine Therese

One of the reasons I decided to go with ovary removal was my concern that I might not go through menopause for a while. I was a late bloomer, didn't start having regular periods and ovulating on my own until I was 36, at which point I got pregnant with my daughter. Once I stopped taking tamoxifen, full-blown periods have come back every 28 days. I am doing at 50 what I couldn't do at 20 or 30. Since my side effects on tamoxifen were almost non-existent, except for the ovulation pain, I was thinking the side effects from ovary removal (hot flashes, headaches, brain fog, etc.) might not be a problem for me. But I won't know until I do it. Another reason to try lupron first, I guess.

Anonymous

Give the Lupron a try first and see how you do. That decision is always reversable while a surgery isnt. I started on monthly Zoladex at 42 and got through the hot flashes but after about a year of that got frustrated at the timing - every four weeks I had to go to the hospital for an injection with the worlds largest needle. Now, with my situation I didn't have a choice, but it really limited planning of events and the like. Finally I asked for the ooph this spring, which was fast tracked once we found out I was BRCA1+. Easy surgery, maybe a week of recovery with a few days in bed.

You could get some pretty heavy side effects from the anastrazole, though, so something else to consider. Either way you are going to be feeling the lack of estrogen.

You are much closer to natural menopause so that should factor into your decision as well - I believe there is benefit to ovaries for bone health after menopause, but thats something to ask your team or your gyno. Unlike your cousin, you have a low risk of recurrence, a low grade cancer, and are under active management so if something does go wrong (such as ovarian cancer) it is more likely to be picked up sooner.

Salamandra

Say you couldn't tolerate AIs either. Would you rather have whatever risk reduction you get from early menopause anyway, or would you regret having removed your ovaries for a drug you can't take? If the former, I think going surgery first is reasonable. If the latter, it probably makes sense to do a trial run with suppression.

(I think it's unlikely that you wouldn't find an AI that you could tolerate, but it might not be the first one you try, and it is a possibility).

Finally, there are other SERMs. I couldn't tolerate tamoxifen but I am doing great on fareston (toremifene). My doctor didn't offer it to me, I had to push for it. But once she did some more research she was supportive. It might be worth trying other SERMs first. It's possible you will have the same side effects, but also possible not. (I'm assuming you already tried other hacks like changing timing, dosage, and generic brands).

Poola

Salamandra, I think you hit on why I decided to go with oophorectomy. I will do whatever I need to do to reduce the estrogen in my body, so I thought I might as well remove my ovaries. Doing so eliminates what could be several years of lupron shots. I think it also would help me mentally with my fear of ovarian cancer. Logically, I know that my cousin's cancer isn't a good predictor for my getting ovarian cancer. But I never would have thought I would be diagnosed with BC at 48 either. There's no history in my family and I don't have BRCA. But seeing what my cousin went through affected me. Also, if I'm going to go through menopause in the next few years anyway, why not just get it over with. My oncologist did not offer any alternatives to tamoxifen . . . just lupron/AI or oophorectomy. He advised me to meet with my gyno to discuss ovary removal, which I did, and decided to go that route. Came home and started second-guessing myself. I am going to meet with my oncologist next week to discuss my decision. After meeting with him, I may cancel surgery and try lupron. But just typing that makes me anxious about leaving my ovaries in there.

LaughingGull

Are you completely sure that the alternative to Lupron + AI that they recommended for you is oophorectomy alone, without an AI? Even if you remove your ovaries, estrogen is produced in other parts of the body, so even after oophorectomy, if your cancer is HR+, and the target is lowering your estrogen levels, you also get an AI.

I totally understand your cousin's experience weighing heavily in your mind. But you need to make your decision based only on the evidence and circumstances pertaining to your cancer and prognosis and try to take out of your decision factors that affect your perception, but are not directly relevant to your situation.

Once your ovaries are gone, you cannot get them back. There is no harm in trying Lupron + AI first. I had oophorectomy at 48 when I was perimenopausal. I consulted with a couple gynecologists, one of them a gynecologist-oncologist, and they both told me that if you are in your 50s, those benefits of keeping your ovaries are negligible, they are a factor more for younger women. But my cancer was strongly estrogen positive with high risk of recurrence, with significant residual disease found after surgery.

Your gynecologist should be able to elaborate on benefits and risks for your specific case, and if he/she is not able to, you may consider consulting with a gynecologist-oncologist.

Best of luck with your decision!

LaughingGull

voraciousreader

another issue with respect to ovary removal….

https://www.mayoclinic.org/medical-professionals/obstetrics-gynecology/news/hysterectomy-associated-with-an-increased-risk-of-cardiovascular-disease-study-says/mac-20476157

looking at the evidence, at 53 and pre menopausal….i chose lupron and tamoxifen for 5 years, followed by letrozole for three….

only symptom….hot…all of the time. Still hot…mom died at 93…she sweat all of the time too. I have been on meds to make me more comfortable. That said…i now layer my clothes and in the summer wear a Frog Tog around my neck….

likewise….want to mention….as we age, our risk of cardiac and stroke issues go up. With heart disease galloping in my family, I take that risk very seriously and do everything I can do to remain healthy. Medicare kicks in in January and I just keep my fingers crosses and hope for the best.

gooos luck with your decision! I wish you and all my BC sisters well

Poola

Thank you everyone for your replies. I think the fact that I am stressing this much means I need to press pause. I am going to leave my scheduled surgery in place for now. But I want to ask my oncologist next week about my specific risk for ovarian cancer, especially in light of cousin's cancer. I also want to know if I will have to take an AI even if the ovaries are removed. If that is the case, it seems logical to at least try the lupron first.

LaughingGull

It is normal to stress over these things, and also to realize, after expressing an initial preference, that there are factors one didn't consider. They are important decisions. Take the time you need to gather all the info you need to make your decision, and ask the oncologist and the gyn all the questions you need answered.

kathabus

I was in a situation where I bypassed chemo with a positive node and did ovary suppression and AI instead. That was my treatment plan, because of a low oncotype score.

I can't explain it....I just didn't want the shots. I kinda just knew that I would do the shots....get sick of them....and do the surgery anyway. So I did the surgery right after radiation. I just wanted to start the next chapter and move on. NOT for everyone. NOT. But with that being said, my quality of life actually improved after the surgery. Not worrying about what the ovaries were and weren't making. It felt right. I mean, I didn't WANT to do it if I didn't get cancer. But I did.

I will tell you that I cried and cried....felt like I was being robbed of time....felt like I was going to age tremendously....fearing a low quality of life was on the horizon....on and on I could go. With all that being said...I did it anyway because I had my mind made up.....and I haven't thought about it since. Doing great. Yes, it can bad for your bones and possibly heart. But estrogen also makes my cancer grow. So I take supplements for the bones and I exercise everyday for 30 minutes.

It's not an easy decision at all. Good luck navigating through it!

AliceBastable

Poola, I had a very thorough hysterectomy, taking the uterus, tubes, ovaries, cervix, everything but the vagina, in 2008 because of cancer. I still got a high ER+ breast cancer in 2018, so don't assume no ovaries = no estrogen.

skv0123

Poola - I had my ovaries removed approx 16 mths year ago, August 2020. I was originally diagnosed at 47min June of 2019

I had a BMX July 2019, then started tamoxifen. I took Tamoxifen for 3 mths then added Lupron October 2019. I talked to my oncologist first about having my ovaries out & due to my age she was not against it, and encouraged me to try Lupron first. I took all of my steps slowly.

I took the Lupron for 15 mths, i tried an AI (letrazole) after 3 mths of Lupron After about 3 wks of the AI, I was the most depressed I had ever been in my life & didn’t want to get out of bed. My onco immediately took me off & put me back on Tamoxifen. She has had one other patient react that way to an AI. I have stayed on Tamoxifen & I am still on it with the goal to try another AI this summer.

I got tired of the Lupron shots & you have to get them very close to the same day every month or every 3 mths. Due to my being close to menopause, my onco supported having my ovaries out & I did want to reduce my estrogen as much as possible. The gynecological oncologist told me that people have more increased side effects after an oophorectomy compared to Lupron. She said that the Lupron does not eliminate your Estrogen as much as menopause. She was correct. I have more side effects after complete menopause but I am glad I don’t have to worry about the shots & I am through menopause. Your body tries really hard to make estrogen & other areas take over which is why they keep us on Tamoxifen or an AI for a but.

There are positive & negatives to both. I hope this has been helpful.

a_nic_

kathabus - I assume you didn't take any HRT due to er+? Sorry if thats a dumb quesiton, this is all very new to me. I'm scheduled for an oophorectomy Tuesday and I'm so nervous about going into menopause. I can't take any HRT (not sure I'd even want to) due to my cancer being er/pr+. If you didn't take any therapy, how have the menopause symptoms been for you? I'm only 41 so pretty far from natural menopause. Thank you!

Poola

Hello, everyone. I wanted to give an update, since someone else may be struggling with this decision. Of course, everyone's situation is different. I saw my oncologist yesterday. My estradiol level is very high. Therefore, he thinks it will be at least a year before I enter perimenopause and could be several years before I enter menopause. Based on that, he was very positive about the oophorectomy and thinks it is the best and least complicated way to reach our goal, which is to get me on an AI. Without surgery, I would have to be on lupron and an AI for a year, then come off to see if I am entering perimenopause. If not, back on lupron for another year and repeat. That is a situation I do not want to be in. On the way out of his office, I was blessed to run into my patient coordinator for my BC. She is a registered nurse, and when I told her what was going on, she agreed that this was the way to go. After talking with both of them, I feel much better about the surgery.