Instant surgical menopause?
Hi ladies,
For a variety of reasons, including the advice of my geneticist, I am considering having my ovaries removed. I had breast cancer at 36. I am now 42. I did five years of tamoxifen with no great issues. I want to know what to expect with instant menopause. Mood issues are my main concern. Insomnia? Any upside e.g. no PMS?
I think I will be ok working through the decision, I just would like to learn some of what to expect.
Thanks very much.
Sandy
Comments
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Hi Sandy, I believe we have crossed paths before. As part of my treatment I had surgical oophorectomy for my 3rd surgery. Although I was 52 at the time, I had not started menopause and was ER & PR + with 80% receptors. Of the 3 surgeries, the oophorectomy was by far the easiest, however I did take a long time to come out of recovery on the day, as for some reason I did experience pretty bad pain, however by the next day I was OK. (had overnight stay in hospital as I live nearly 5 hours away in the country, so doc wanted me to stay overnight just to be sure). Maybe my body just reacted as it was the 3rd surgery in 3 weeks.
At the time it was a pretty big emotional roller coaster having them out, however as I was also getting over the 1st op, and the 2nd being 30 nodes taken at auxillary clearance, maybe it was a culmination of all 3 ops that caught up with me.
I have suffered severe hot flushes, and continue to do so (3 years ago now), however I am also on Femara, so that would be contributing to the flushing also. I do also get emotional and teary very easily, so maybe that is the lack of estrogen, however if that is the biggest price to pay, then I will be happy. Prior to this all starting my bone density was very good (no doubt due to high estrogen) and each time I have had the bone density test since, my density is dropping. I am due for another test next week, so it remains to be seen how low it has dropped in the last 18 months.
I do know some ladies who are sorry they had the ovaries out, due to the side affects etc, however I am not sorry. Yes I do suffer every day, and the guy who sits next to me at work thinks I am crazy having my fan whirring away next to me in the middle of winter, however if it helps to keep me free from recurrance, then thats OK by me. Good luck with your decision. I see you are fairly young and have young children, so if the doctors think it would be beneficial to help keep you to remain cancer free, then I would think seriously about doing it.
I guess long term, I don't know what medical problems I will end up with because of the low estrogen. I have read that it also increases your chance of a heart attack and all sorts of things that could kill us, however the cancer can also kill us first.
regards Aussieched
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Hi Aussieched,
Thanks so much for your reply. On the emotional side of things e.g. teary etc. Do you think that is a new symptom? Did you have this prior to the surgery and prior to Femara? I get bad PMS and I definitely do not want this surgery if things will get worse.
My boys are ten now and yes and I still want to be around for a long time. However I don't want that time being marred by me being overemotional and grumpy! I need to balance the pros and cons. The risk of recurrence and ovarian cancer is real, but not overwhelming.
I keep getting sent for ultrasounds for ovarian cysts and my geneticist says I have a 20 per cent lifetime risk of ovarian cancer. This is on top my breast cancer diagnosis. I don't have a known gene abnormality but my risk has been calculated on my own premenopausal breast cancer diagnosis and my family history of breast and ovarian cancer.
I can hack difficult surgery and pain, I just don't want the mood issues. Maybe for six months but not for three years. My long suffering husband might file for divorce!!
Your reply has been very helpful for me so thanks so much for writing.
Take care,
SandyAust
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Hi Sandy, I am 39 and had breast cancer last year and I was tested for the gene, I carry BRCA1, so based on this I had an oophorectomy in January this year. Yes, yes, yes, I was thrown into immediate menopause. I do have mood swings, but they are starting to level out now, it was really bad at first. But I have 2 major complaints - weight gain and hot flashes. Other than that, it's not been too bad. I did acupuncture for the hot flashes and it does help. Unfortunately I am still struggling with the weight gain, no matter how much I exercise, the weight is not going anywhere and I have changed my diet too. Honestly for peace of mind, I am glad that I did have the surgery done. I so do not miss the monthly visits.
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Hi Sandy,
I had an oophorectomy in January, as well, along with a bilateral mastectomy. I was 46 at the time. The hot flashes were a strong starting about 3 weeks post-op, but they began trailing off by August. Now they are less frequent much less intense. I've had no insomnia. Unlike Diva, above, weight gain has not been a problem. I've actually lost 20 pounds--still have 10 to go. I wonder whether our ER status has anything to do with the different reactions. I was highly ER+ and could never lose the baby weight after kids. Also, my moods have never been more stable. Sure, I'm not exactly doing cartwheels as I deal with reconstruction and the first anniversary of diagnosis, but I used to have pretty bad mood swings with my cycle. Sorry to go off topic...just speculating. I agree, that the peace of mind gained from my oophorectomy was well worth it. Good luck with your decision.
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Sandy---I had a TAH/BSO (everything removed due to large ruptured ovarian cysts--not by choice!); I'll be very honest, the first year was rough. Hot flashes, night sweats, insomnia, fatigue, very emotional; but I was recovering from major abdominal surgery and taking tamoxifen at the same time, so that probably contributed a lot. Things definitely leveled off over time, but 5 .5 years later, I still have hot flashes, but muscle stiffness and achiness are my biggest problem. (I took tamox 5 years, not take evista for prevention--I have LCIS and family history of ILC).
Anne
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I had a hysterectomy at 35, many many years ago. I still remember being in the hospital sweating and crying with my "instant menopause". I was immediately put on estrogen. Together with the birth control pills earlier, who knows, maybe that's why I got BC. But it was the best answer they knew at the time. Good luck as you adjust, and a loooong life!
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I was diagnosed with breast cancer a year ago - I'm now 45. I underwent a partial mastectomy, chemo and radiation. I recently received testing that showed I have the BRCA2 mutation. My family physician advised having oophorectomy/hysterectomy, however, my oncologist would not make a recommendation. She said this was a decision I needed to make on my own, but did say if it were her, she would have the ovaries removed. I had her begin the process of booking surgeons - ooph and bilateral mastectomy, but am now reading of some things that are a bit concerning.
My biggest concern is the emotional toll this will all take. I don't want to live my life worrying about a reoccurence or ovarian cancer, so would like to have this done. My family doctor mentioned they might do some hormone replacement therapy for quality of life issues. Has anyone heard of this being done?
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Hi, I am not BRAC but had an oopharectomy/hyst. by choice, after a second occurrence of ER+ bc.
I had the same concerns you do about the ovarian cancer....again, not BRAC,but I was too ER+ and I figured, at 54, I am not using those little cancer bombs anyway.
Your GP is completely off base. Since you are ER+ they will not want you anywhere near any type of hormone therapy. that is for ladies that do not have (or had) breast cancer.
All the hormone therapy they might (stress might) consider is IF you have major issues, such as vaginal atrophy, continual UTIs, etc., is a minor source of estrogen cream and then only rarely. Some women do get an estring, which is a low dose estrogen replacement plastic ring inserted. My onc is one of those that said "exhaust everything on the market before you put any estrogen back into you".
The cream is on an occasional basis, and if your bc was hormone positive, they won't want you anywhere near it unless you end up with huge issues. Some oncs say OK, but they will still warn you against it in general. There is no known pro or con effect study to say yea or nay, but any good onc will say no to this, or at least urge extreme caution with it. Mine has okayed occasional (rare) use with the codicil that I understand that there is a risk with this. I will probably fill it and not touch it.
good l uck, I've never regretted it ever. Recovery was a cinch, and no, no horror stories of hot flashes, etc at all. A few warm ups but only for a few months.
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p.s. I have never been less moody. My sister, one year older than I, with natural menopause, is wayyyy moody and very crabby, almost nuts.
Me, I'm fine
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I am 47 and BRCA1+. I had TAH/BSO in June. I was perimenopausal prior to starting chemo but no where close to menopause. I have had minor hot flashes (even being the summer) and some mood swings but that has seemed to level off lately. I still get "hot" but nothing too annoying. My doctors say this is the worst it will get. I was training for the 3 day Komen walk all summer. I have read that exercise helps with menopause symptoms. Who knows?
My sister is having her TAH/BSO tomorrow morning (BRCA1+ but no BC). She is only 40 and I hope she has a similar experience. The big debate is if she can have ANY hormones to help her through the first few months. The genetic counselor said 6 months, her gyn says 6 years (ridiculous), and my onc says NOOOOO. Part of the reason for the BSO is to get rid of the risk of Ovarian Cancer but it also reduces her exposure to estrogen and thus reduces her BC risk. I just pray that her SE are minimal and sure does not need the estrogen! I will try to remember to post her experience in a week or two.
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So nice to hear from you both. I look forward to hearing how your sister is doing Issymom. I hope for the less moodiness Anniealso. It's been quite the emotional rollercoaster this past year. I'd like a break : )
I'm going to see my family doctor on Friday and will ask him to check what my hormone levels are like now before anything is removed. Could be that I'm quite low already.
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Wow ladies! I am so happy to have so many replies. I am in a rush now but will be back to ask more questions.
Thanks!!
Sandy
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I'm so glad for this forum. I've been part of a breast cancer support group, but haven't met anyone in person yet who had either BRCA 1 or 2 or the oophorectomy surgery.
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BRCA2 positive, I am 49 now but was dx w/the mutation @ 47. (ooperectomy & prophylactic mastectomy w/reconstruction 2 months after dx) 4 days after the ooperectomy I started to experience severe night sweats, couldn't sleep.....my OBGYN put my on a low dose hormone called FemHRT 1/5 and I have been fine since then. My body just was NOT ready for the surgical menopause. Mood swings had been normal but each person is different as to how they will respond to the"instant menopause".
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Thanks ladies for all your replies. I guess my main concern if I have my ovaries out is mood. I suffer badly from PMS. This was less pronounced during the five years I was on Tamoxifen.
It seems some ladies are saying their mood has never been more stable. This is encouraging. For those of you who had mood swings for a period, how were things when the mood swings settled down? Do you think things were better before or after menopause? Anniealso and Sunsnow I would particularly like to get your comments on this. Would you say you had menstrual cycle related mood issues that resolved after menopause?
I am undecided on what to do. The mood issue I think will make or break my decision.
Thanks.
Sandy
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brca1 + had everything take out in jan. felt great the day after. since i was on tamoxifin, my hot flashes were really bad-on hte covers, off the covers, on the fan off the fan. now that my breast doctor took me off it the past wednesday(going to be scheduled for the pbm in jan. of '11), hopfully the symtoms will go away. but after my surgery, no mood swings, i was ready to back to work, but of coarse couldn't-do alot of lifting. as anniealso said-its nice not having the monthly visits, but once in awhile have to wear a pad, do to sometimes not making it to the bathroom.does nanyone have that problem?almost peeing in your pants before getting to the bathroom.
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Sandy - That's exactly what I would say. I have not had mood swings at all. Yes, I get down or irritable, but it is directly related to an event, i.e. my father's death, kids refusing to clean their rooms. I'm not nearly as volatile when I am upset. I have a pretty steady feeling of calm that I've never had before. Some of it I attribute to cancer--don't sweat the small stuff, etc. Mostly, I think it's because I finally don't have the huge hormonal swings I used to have. It's one of the few good things that's come out of this whole nightmare. Feel free to PM me if you have any questions.
Maura
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Hi Sandy
I am 39, I had the ooph surgery December 09 at the same time as my second breast reconstruction surgery after bilateral mastectomy. My oncologist had done a blood test and found the I was heading into menopause due to chemotherapy. I am on Femara and I have been having hot flushes so can't really tell you if it is the drug or the menopause but they have really subsided. Being E+ I cannot have hormone therapy.
You seem mostly concerned about mood swings, since the surgery my partner has commented that I am a bit too balanced now. I don't have fluctuating moods and really don't get bothered by much and am quite chilled out. I have never had insomnia.
Go for it, you will definitely have peace of mind that you will not get ovarian cancer. No PMT is brilliant. good luck.
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Thanks Maura your information is very helpful.
Hi 1WestAussie. Thanks also for your info. I am in Brisbane now, but was in WA when diagnosed six years ago. I had my surgery and treatment at the Mount. I am enjoying the weather over here but I miss Perth.
Thank you to everyone for your responses.
Take care,
Sandy
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