I'm so confused! Tamoxifen vs Arimidex vs Oophorectomy
Background: I am 50 and still getting periods. This is my 2nd go around with breast cancer and this time I am ER/PR+ (95%). I had no hormonal therapy for the first dx (I was only given a 2% chance of recurrence so not advised to do hormonal therapy). I also have a cyst on my ovary (found on PET Scan) but haven't heard anything yet about whether that is a concern or not.
My MO gave me the option of 2 medications to choose from: Tamoxifen or Arimidex (may need to have Zoladex with it?). I also asked if an Oophorectomy was an option and was told yes but nothing was really talked about with that. Besides going over very basic side effects, that was all I was given to go on. I have to go back in about 7 weeks (after rads) with my answer as to what I want to do. I've read through different threads and I'm scared, confused, and overwhelmed. So many side effects and I don't know which option is the best for me.
Since I am so high (95%) ER/PR+, I thought I should get rid of as much estrogen as possible, especially since this is my 2nd cancer dx and I don't want a 3rd. Correct me if I'm wrong, but I think that would be either the Oophorectomy with Tamoxifen or Armidex with Zoladex? Or will Tamoxifen be able to take care of the cancer when someone is that high %?
When I look at the side effects of the Oophorectomy and Armidex/Zoladex, I worry that I would be doing more harm than good to my body due to suddenly stopping the estrogen.
Also, I read that taking a selective serotonin reuptake inhibitor can reduce the effectiveness of Tamoxifen. I get chronic migraines (3 to 4/week) and I'm on Amitriptyline (SSRI) as prevention for the migraines and it works great. I'm afraid to change it due to Tamoxifen.
Is anyone else around my age, premenopausal and high ER/PR+ %? If so, what did you do or were you advised by your MO?
Any other advice would be appreciated. I don't see a clear-cut option for me and I'm trying not to freak out but I am right now. I'm so thankful for the positive threads and people that have little to no side effects but the other side effect threads, (and a couple people that I have talked to personally), can be overwhelming and scary.
Comments
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Hello! I had oophorectomy in January at 41 years old. I was diagnosed 2 years ago at 39. My ER was also high at 91-100% (the lab doesn't give exact number for some reason). I did a year and half on Tamoxifen as my oncologist at the time didn't think I needed ooph due to low Oncotype of 12. That oncologist moved and my new oncologist thought it could provide a small benefit being that at my age I probably still had another 10+ years of menstruation based on my mom's menopause age of 52. I went ahead with it because I wanted to feel like I did everything possible to see my kids grow up, especially since I didn't have chemo. The way I figured it, I would be going through menopause eventually, this was just coming sooner than expected. The surgery itself was quite simple and was just sore a few days. I did switch to arimidex in April. I do have hot flashes, mostly at night and I have some joint pain in both ankles but nowhere else. So I'm actually not sure if it's the arimidex or maybe I'm starting to have arthritis because my ankles are achy and stiff in the mornings and after sitting a long time. I'll talk to my onc about that at my next appointment. I also get migraines and always got menstrual migraines about 2-3 days before my period like clockwork. I was afraid such a hormonal shift would make them even worse, but I"m happy to say that didn't happen. Now the only time I get them is with other triggers like not enough sleep or dehydration but that doesn't happen very often. So there's the one bright spot in this! I also had a DEXA scan after I started Arimidex to get a baseline bone density test since it is known to decrease bone density. Well, quite a surprise I had osteopenia in my lower back and hips (numbers very close to osteoperosis) and my femoral neck has full blown osteoporosis. So I had my first zometa infusion for that in May and will have another in November. Overall, I'm glad I did it because my personality is very risk adverse and I didn't want to wonder about if I should have done it.
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Just came across your post and wanted to clarify for you that Amitriptyline (elavil) is not an SSRI- it is a tricyclic antidepressant. Not sure if this could make a difference in your decision
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You already know that Tamoxifen is for pre-menopausal women and an aromatase inhibitor (there are three) is for post-menopausal women, right? Since you're not yet in menopause, you can either go with the Tamoxifen or have chemically- or surgically-induced menopause and go with an AI. Either way the goal is to get rid of the estrogen in your body.
Others who have been faced with the decision will weigh in. (No decision for me--I was already post-menopausal.)
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momoschki - I looked online and saw 2 places that said it was an SSRI. After digging further, I found more credible information that says it is like SSRI. Thank you for the clarification.
Ingerp - Yes, I know that Tamoxifen is for pre-menopausal and AI are for post-menopausal. My MO said that the Zoladex would go with the Arimidex and bring it down to 0 estrogen. I'm assuming the Zoladex added to the Arimidex would make me "look" like I was in menopause by shutting down the ovaries and prevent estrogen being made by the rest of my body (glands, fat, etc.)? That is what I'm assuming after doing some research.
Dmoore39 - Thank you for your feedback. My mom went into chemopause at 53 so I know I probably have at least a few years left as well. So your body didn't react right away from the oophorectomy? It reacted more with the Arimidex? I was unable to track my migraines to just menstrual migraines. They happened all the time, even when I tried cutting foods out, drinking more water, etc. The only thing I do know is that direct light is a trigger. Other than that, we couldn't figure it out.
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Did your MO give an opinion on which option they would recommend over the other, or is completely choose your own adventure here??
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gb2115 - My MO didn't give me an opinion on what she would recommend. She gave me paperwork on each drug to read over but when I looked at the paperwork it was pretty generic (what not to take it with or if you have certain conditions, how to take it, what to do for a missed dose, and possible side effects, etc.
I may just have to get a big list of questions together and call her nurse and ask her all my questions.
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I was diagnosed two and a half years ago at age 49. I was still getting regular periods at that time. I was 95 per cent ER positive also and high PR as well. My Oncotype was a 3 but I did chemo because of some positive nodes. My MO had said from beginning he wanted to shut my ovaries down and have me go right to AI's. I had done some research and I was in full agreement with him. I remember someone pointing me in the direction of the SOFT trial which I read and it said ovarian suppression with AI's has a better track record than tamoxifen. I went with every percentage I could get. I did four months of Zoladex shots while I started anastrozole with the intention of getting an oopherectomy as soon as I could. I had the ooph and it was an easy surgery and recovery. I don't miss my periods at all and actually feel more balanced and even as far as moods without the crazy monthly hormone fluctuations. I was very clear on what I wanted to do and have no regrets. Best of luck with your decision.
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LeesaD - Thank you. That was good information for me to think about. Did you have any side effects from the whole process of shutting down your ovaries or the oophorectomy? I know the side effects from AI can be hard. How long are you supposed to be on the Arimidex? My doctor said 10 years for Tamoxifen or Arimidex.
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Hi Mocame,
I am three years out from a post-mastectomy local recurrence, ER 99%, PR 84%, Ki-67 3, Grade 3 (weird, but not a typo). I was 50 and pre-menopausal, and also a migraine sufferer - though not as frequently as you are and with well-documented triggers, so no preventative medication.
I have been treating with monthly Lupron injections and Arimidex. This has not been without side effects - mostly joint pain and some weight gain despite very high activity levels. The surprising side effect for me was the migraines stopped entirely. I have stress-tested myself on this with known triggers and have had a grand total of one migraine since starting treatment.
Your mileage may vary - it was pretty clear hormone fluctuation was a factor in my case because they hit me hardest postpartum. But it is possible ovarian suppression may have a positive effect on the migraines for you and open up some options. Your neurologist may have some thoughts.
I haven’t taken the step of having the oophorectomy: I figured that option was always open and Lupron was a smaller commitment. But for my risk level and proximity to menopause, the AI was an easy choice for me.
We are all different, but this was my experience. Good luck on your choice and healthiestwishes,
Yuuki
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Thank you, Yuuki, for sharing your experience. Something to consider. I would love to get rid of my migraines!
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Hi there. I was diagnosed last year, age 49, pre-menopausal, and 100% ER and PR positive. Just a couple of months after starting Tamoxifen, it was discovered that I needed to have a hysterectomy. Yay another surgery six months after a BMX! Anyway, this meant I had the option of having an oophorectomy at the same time as the hysterectomy. My cancer was not very aggressive with an oncotype score of 9, so my MO said it was entirely up to me if I had my ovaries removed or not. She said it would've been an entirely different discussion if my oncotype score was in the 20+ range. My decision in the end was to keep my ovaries. I figured with my overall low risk of recurrence plus taking Tamoxifen, that I was already doing more than enough and I didn't need to put myself through a hard menopause on top of everything else.
Hope this helps.
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Ladyofthela - Thank you for sharing your experience. My oncotype was 18 so it is still low but closer to the 20+. Have you had any SE from the Tamoxifen? How long did your MO suggest you take it for?
Reading everyone's experiences is definitely helping me. Thank you!
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Hi, I finished Chemo and radiation for stage 2 bc in July. I have been on Anastrozole the past 2 months and getting my Zoladex shots monthly. I am due to get an Oopherectomy Wednesday. I figured why suppress the ovaries when I could just remove them. I wasn't planning on any more kids and I've been having menopause symptoms since treatment started in January. I felt like an Oompherectomy was the way to go. I just hope the menopause symptoms don't get worse.
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I haven’t had any major SE except for the hot flushes, but they are manageable for me. My liver enzymes are elevated since I started Tamoxifen, so that’s being monitored as it is known to cause some liver toxicity in a small sample of people. I’m not sure how long I’m supposed to take it for, I’m guessing 5 years??
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Ladyofthelake - I'm glad to hear you don't have any major SE's from Tamoxifen. I hear so many of those with horrible SEs that I just assume most people are experiencing the same thing. I haven't made my decision yet but I hope I'm one of those, like you, that can take the meds without many issues.
My RO said that the new guidelines/recommendations are to take it for 10 years. Seems like an awfully long time!
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Yes, I think those of us who don't have many issues with Tamoxifen stay quiet on the whole, we don't have much to complain about, while those who do have issues with it are more likely to speak out about it. I hope if you do decide to take Tamoxifen I hope it works well for you. I agree though 10 years is an awfully long time, I'm not sure I want to go that long with it.
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I had ooph/hyst at age 50; It was not difficult for me. DX'd with BC at 58. I would recommend getting a DEXA bone density test if you have not already. AI's can cause bone loss, whereas Tamoxifen does not. Had I know when I had my Ooph yrs ago that removing ovaries, thereby lowering Estrogen, also causes bone loss, I would've monitored my bones more closely. When I was DX'd, I found out I have osteoporosis and osteopenia, so I took Tamoxifen instead of an AI. Best wishes!
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