Surgical vs medical menopause
Hello friends, please tell us your thoughts about surgical vs medical menopause. I know some of you have posted about this- wondering what you can share about your experience. Anyone doing fine with medical menopause? Anyone not so much and then opted for surgery?
Comments
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Can't help you - I went through natural menopause at 44 with no negative SEs. Except for a few weeks (which were not 'fun') I did not do HRT. I was 63 when DXd.
(Nothing to help but does 'bump up' your thread.)
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thanks, kicks. Hope you're feeling well
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I've done monthly lupron shots since July and doing well. I get hot flashes at night and minor joint pain but that's it
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Kathy are you also taking an AI
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I was on Lupron for about six months before I had my ovaries removed. I had been in 'chemopause' for about five months before that. My symptoms (OMG HOT FLASHES!) were pretty much the same chemopause/Lupron/surgical menopause. I knew I wanted them out as couldn't really deal with having blood tests and shots every 28 days. The surgery was not bad, but I did have two lime-sized uterine fibroids removed (they weren't planning on removing as did not show that large on US), and the surgeon insisted on two-weeks off work, which I was more than happy to take.
Almost two and a half years later and I *think* the frequency of my hot flashes is getting less. I also think it may be meditation (I'm at 40 days in a row.)
Let me know if you have more specific questions!
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ready to rock- thanks for sharing- sounds like you had a whole range of experiences. Great to know you're at 40 days meditation. What practice are you following? And whew hot flash coming on as we speak!
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Well, I've been in "medical menopause" almost two years now: monthly Zoladex shots (so I can take Aromasin even though I was pre-menopausal). Yes, there are hot flashes (sleep with the ceiling fan on), and moodiness (addressed through Celexa -- an SSRI). But, otherwise, nothing. I also get my port flushed while getting my Zoladex, so that's convenient. (I'm keeping my port for five years, post-diagnosis.) Plus, I get to check-in with MO's nurses and tell them how I'm feeling. Luckily, MO is just 10 minutes away, so it's not really inconvenient. I could get my ovaries out, but OB-GYN isn't that enthusiastic. He points out that women who keep their ovaries tend to live longer.
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I don't follow any meditation practice - this is all new to me! I heard about an app called "Insight Timer" and it is a collection of thousands of free meditations as well as having different communities, and recording your stats. They started basically a challenge for meditating every day in 2017 (called 365 days together) and over 45,000 meditators have joined the group. It is very supportive! I have rarely done two days in a row before and I actually never meditated before last year, so I'm pretty proud of 40 days and plan to continue!
For anyone that has anxiety (HELLO CANCER BOARD!) - I would highly recommend meditation and I am really in love with this app!
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Elaine, Thank you for sharing your experience. I'm also close enough to my MOs office, so monthly shots aren't a long shot, sorry for the bad pun. Of course I wonder about things like- what about vacations? How do you manage that if you're going away during shot week? It's good to know that you have a positive experience with seeing your Dr each month!
Ready to rock- thanks for the meditation tip. I was using an app called Calm, but it was really pricey! I decided instead to put my $ toward acupuncture and supplements. I will look for the free app that you recommended.
Thanks again for your replies. Hope you're feeling well and seeing lots of light in your lives!
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Falconer, I am on an A.I. As well. I started with tamoxifen then switched to an AI after a few months
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RE: vacations, you can work around those, depending how long you'll be gone. I don't get my Zoladex shots exactly four weeks apart or anything like that. Sometimes, it's more like every five weeks or whatever works best for me. MO's scheduler is pretty flexible.
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Thanks Kathy.
Elaine- good to know! My brother is getting married in Vancouver, BC this summer and I was wondering how to manage.
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I had one Zoladex shot and said no more because I didn't want to be tied to going to my doctors office every 28 days for who know she how long. I had a hysterectomy due to large fibroids and have been thankful I did that. I wasn't in menopause and have to take Aromasin. Hot flashes have been ok. Join the pain is mild, and insomnia comes and goes. I'm dealing with sadness right now, and I don't know if it's from the drug or the past year. Good luck
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Hi Buckeye- thanks for the information. Once you decided to stop Zola, who did your surgery? Which dr does that procedure?
I'm sorry to hear about your depression. I completely understand. I wish I had some good advice, but I'm in the same boat. Being stripped of hormones, worrying about bc, insomnia, are such an emotional strain. I'm working with a therapist, and that helps some.
Hope you find peace my friend. -
I am struggling with this same decision right now. I'm on an AI (exemestane) and I have had 4 Zoladex injections. I have currently a little joint pain, sleep disturbances, hot flashes, and fatigue but that could be from the AI. I thought I'd be fine with getting the injections but that does become a little bit of a pain in scheduling etc. I'm starting to feel like a pin cushion. Plus, with the last one I got some shooting pains in my abdomen near the injection site. I called the nurse and she said that I may have irritated a nerve. Has anyone experienced that? Thinking of doing this for the next 5 years is making me start to consider oophorectomy. I would love feedback... And best to you Falconer!
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Jessi I get my injections right inthe rump so I am not sure what you're saying- yours is in your abdomen? There are lots of women onsite who have oopherectomy and hysterectomy procedures. Have you spoken to your MO about it? Mine gave a resounding No when I asked...
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Falcolner,
If I were to get an ooph, it would be my OB/GYN who would perform the procedure. He'd be willing to do it if I wanted it done. Right now, I get my Zoladex shots in my abdomen. But, they've never hit a nerve, just a blood vessel every now and then.
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Mine are given in the abdomen, not sure why there. I should ask about getting them somewhere else. Yes, I did talk to my MO. At my last appointment I was feeling ok about the injections so it wasn't a big conversation. He had mentioned that it's my choice whether to do the surgery or continue on the Zoladex. Why did your MO say NO to the surgery? If you don't mind me asking. I think my doctor wanted me to try the shots first to get an idea of how I would respond to the ovarian suppression in non-permanent way.
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Following this! I'm 32. My doctor is giving me the choice between tamoxifen or "menapause inducing shots" and arimidex. Damned if I know what to do...
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Hi~
If I had known what I know now I would have asked for the medical menopause Lupron shot/given in back of my arm at my request & Femara upon initial DX/surgery. I was 46-Left MX with Oncotype of 4. Took Tamoxifen for 10 months and had reoccurrence. November 1, 2016 - Had implant removed, part of chest wall & just finished 28 RAD treatments last Monday. Started Lupron & Femara in December 2016. Now waiting to meet with PS for TE exchange surgery date. My point is...I was already at an age close to natural menopause at 46 (now 48) and feel more confident that taking Femara will greatly reduce the residual estrogen. I did my research at the initial DX but its overwhelming and I am now ok with my treatment plan this 2nd time.
nem126-I just wanted you to hear my story since you are questioning Tamoxifen or medical menopause. I don't ever remember reading this concern on the boards back in June 2015 when I was originally DX and I did A LOT of reading. I would have questioned MO back then but it's ok. You go on the journey in life that is meant for you and I have truly made some amazing friendships this time around. Best of luck on what you decide!
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I think what your oncologist recommends is sometimes based on not only your diagnosis, but your age and how long you can be on these medications until you would naturally go into menopause. So, that may be different for each of us. I don't know if this is helpful, nem126, but the reason my doctor recommended an aromatase inhibitor and ovarian suppression injections over tamoxifen and injections was based on a trial that showed slightly better outcomes (survival rates). After my surgery (bilateral mastectomy) almost a year ago, he started me on tamoxifen as a starting point. We assessed my side effects and then he tried me on the aromatase inhibitor. For me I had some joint pain on the tamoxifen and there was some concern that it might be worse with the aromatase inhibitor. But it was about the same. I then began the Zoladex injections. You don't necessarily have to have your treatment plan set in stone, there can be time to reassess. I am 38 and went into chemopause and since I don't plan to have any more children I am seriously considering doing the oophorectomy.
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In my opinion, and through my research, I decided to forego the injections slated for 2 years, and have the uterus, tubes, ovaries and cervix removed. No longer did I have to worry about doing an annual CA125, which was done based upon my age and me NOT going into pre-menopause. If you have breast cancer, you are at a higher risk for ovarian and uterine cancers. Three weeks ago, I had my surgery. I feel amazing and am walking 10,000 steps a day, and I just started taking Tamoxifen. Originally, I was going to do an AI, but the bone loss and osteonecrosis of the jaw possibility convinced me otherwise. I have a mouth full of caps and bridges due to a genetic dental disorder. I have a great smile, nice teeth, good enough jaw bones and was not willing to risk that at this point. Two weeks after my surgery, I started Tamoxifen 10mgs and am working my way up to 20 mg. The one benefit to having surgical menopause before you are in menopause, is that it is more effective in reducing your breast cancer risk.
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I'm 36 and been in medical menopause now for a year thanks for zoladex and arimidex. Initially I had hot flushes, bone ache, insomnia but all have gone considerably over time. It's very manageable and I want to keep my ovaries because i would like to have children at some point in the future. Plus it's another op and I think I've had my fair share over the past two years.
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Lovey222- thank you so much for sharing your story. I really appreciate hearing it. Helps me to weigh the options. If you don't mind me asking, what were the "stats" on your first diagnosis? (tumor size, nodes, ER/PR % etc). Wondering if they are similar to mine.
Jessillinois- my MO mentioned something in passing about that study as well. Do you remember the name of it? I'd love to look it up and read it if I can.
Thanks!
Sarah
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nem - the trials are the SOFT and TEXT, here is some info. There are some important considerations regarding age in these trials - specifically that it is more unusual for much younger women to develop breast cancer, it can be more aggressive in those younger women, the study population age is skewed to more of a perimenopausal age group, and all of this may have an effect on the trial outcome. This is good information to discuss with your oncologist.
http://www.nejm.org/doi/full/10.1056/nejmoa1412379#t=article
I had a total hyst/ooph at 45, not even perimenopausal yet, due to fibroids in the uterus too numerous to count. I had a history of ovarian cysts as well, with a ruptured one about the size of a lemon in my 20's. The pathologist found a 3cm pre-malignant mass in my right ovary after the ooph that had been undetected by the TVUS done six months earlier. It was either missed, which is consistent with my imaging history - mammo missed my palpable 2.6cm breast cancer, and MRI missed my large positive node, or it grew to that size after the TVUS. Nine years after the TAH/BSO I was diagnosed with breast cancer, so this surgery may not have reduced my risk - but it is possible that I am an outlier. My tumor was 96% ER+, and highly Her2+ so it is hard to say which aspect drove the growth.
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Special K- thanks SO much for the links to the trials! I've got some reading to do
You've been through a lot of surgeries. You deserve a break! I hope you are doing well.
They've brought up and I've considered removing my ovaries and uterus. I'm BRCA- and HER 2- so it seems extreme at 32. I'd definitely want to wait until my 40s if I ever go that route. Who knows. All of this to some degree feels like you are flipping a coin.
I'm only 50% ER+ but 90% PR +.
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So, everyone... this might be a dumb question but... I am assuming with Tamoxifen you likely still get your period, with shots and AI you probably don't?
Assuming chemo hasn't affected it.
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nem - I am doing well now, but it has been a long and complicated surgical story for me - I had a lot of skin healing issues that caused loss of reconstruction more than once. Thank you for wishing me well! One of the considerations in deciding on hyst/ooph, or ooph alone, is the protective aspect of estrogen for younger women. Heart and bones can be affected, so if one is young it can be a long term impact that can cause other health considerations down the line. It is possible that in doing an ooph you might be trading one problem for possible new ones, so I think the closer you can get to a natural menopausal age to do the ooph, in light of not having a BRCA mutation, could make you safer safer from the introduction of a new health concern. Some people do have regular cycles on Tamoxifen, since it is not interfering as much with circulating estrogen, but rather blocking the receptors on the breast cells. Others have irregular periods, or stop altogether, or have much lighter ones. With ovarian suppression and AI I would think your cycle would stop altogether since you are not ovulating, although I have read that some continue to spot for a length of time. The coin flip is a good analogy - there are so few absolutes in this decision making, right?
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I went into instant menopause as soon as I had my mx and started on Tamoxifen. SE I attributed from meds but could be from that as well. I was 49 when diagnosed and had not entered at all into menopause before then yet. Of course had one when I had my mx and that was all I ever had.
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From Premature menopause in young breast cancer: effects on quality of life and treatment interventions by Shoshana M. Rosenberg and Ann H. Partridge
"Life following a cancer diagnosis will invariably be different for every breast cancer survivor, however many young women will be faced with the additional physical and emotional challenges of menopause years earlier than would otherwise be expected. There is a clear need for additional studies of interventions among women in younger age groups in order to identify useful and effective therapies for these young survivors, with the goal of improving the QOL in young women through treatment and into long-term survivorship."
I know this isn't true about all doctors, but besides additional studies about young women, we need more women doctors and researchers who understand women's health and sexuality.
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