I am 35, but I havent had a period for 13 months cos I have been on zoladex, so dont know if that counts as menopausal!?
Seeing my onc in 4 wks, so see what he says then.
Hi Lolly - I dont know how old you are. I am 48.
Chemo has already thrown me into menopause, but to be sure of this I would have to come off tamoxifen for 3 months prior to getting a blood test to prove it.
Once I have my ooph I will be on tamoxifen for another month - just while the oestrogen seeps away (sounds sad doen't it).
I am then going on to a newer drug called Femara also known as Letrozole which has been proven to be slightly more effective than arimidex. But then what do we know...so many different opinions out there held by different consultants/PCTs...
I was told that once you are period free for 12 months you are considered to have had your menopause and then put onto arimidex. You should also be monitored for bone density during that time.
I will fix my op date on Monday and will let you know once it is confirmed.
i had ovaries out april 08 been on tax for 3yrs now, ask consultant if i was going to change to arimidex,said no cause this has lots of side effects to and that it,s not worth changin if ya used to tax, hope this helps
Im sorry, but i cant answer question. I was shocked at even having to stay on tamoxifen, i thought if you had everything out you didnt need anything because your not producing estrogen but i suppose if it was high to start with then there not gonna take any risks. Maybe someone else can answer, id like to know too.
Good Luck for July.
Thanks for your reply. Why do some stay on tamoxifen after removal of ovaries, while others are changed to arimidex? Is it the usual case of different oncs opinions, or is there a medical reason?!
I just wanted to say that they kept me on tamoxifen after my ooph and hystrectomy, i had mine feb just gone.
Good luck ladies
When is your ooph? Mine is July 9th.
Are you on tamoxifen? I am, and am wondering if they will change me to arimidex after, have they mentioned this to you?
glad you got the result you wanted Cutard.
I imagine we will probably be getting 'done' at around the same time.
By the way....if you google 'oophorectomy' you get the animal equivalent of 'spey' come up!!!
Had to laugh!
So pleased to hear they have finally listened to you, its about time.
Good luck with the gyne app sure evrything will be fine. Keep us updated and im really chuffed for you brill news.
Well i went in to my appointment all fired up with my points of view all sorted in my head and ready for battle. The oncologist came in apologised for being so long but he wanted to see me to discuss my letter asked me how I was, I made my little speech, he did the usual grope and poke and then said as I was obviously well aware of the risks/benefits he was more than happy to refer me and I would be hearing from the OOPH team soon.
As simple as that....why the blue blazes couldnt they have just done that in the first place. Did they think I was joking the first 5 tiimes I asked about it??? Not that I am complaing but honestly!!!
To be fair the man is lovely and I have never had a problem in the past so I shouldnt really be surprised. But Hooray!!! Never thought I would be celebrating pending surgery but Woo Hoo!!!
Thanks for all the advice and information.
As ever BC ladies to the rescue. Who needs google.
Love and luck to all.
I am due my pre-med for ooph in a couple of weeks and will arrange a date for the op at that time.
I am pleased to read that keyhole was successful following a 12yr old c-section. I had one 14 years ago so am ever hopeful keyhole will be possible...I was told 80% of the time it is.
Was just wondering - how do you compare the recovery for the ooph to a c-section?
I am on NHS and similarly my Onc didn't suggest the op to me but was more than happy to put me forward for it once I had brought up the subject...she is also young, upbeat and always sees the bigger picture, unlike many of my friends who have mail oncs!!!!
Im booked in for ooph in July. Just wondering how soon you could drive or lift things after keyhole? How easy was it to move about after? Thanks!
What a great thread, since I went in for my own ooph 6 wks ago felt so uninformed, but learned so much from all.
I had keyhole, which went well, even after a previous c-section (12yrs ago tho) and after a couple of days of continuous painkillers, the whole thing settles down very quickly. Stopped tamox just before op and had a month holiday from all drugs (hercept just finished too) which was magic. Felt sooooo much better overnight. No more fluctuation from the drugs for a while was such a relief. I changed oncs half way through treatment after chemo over an arguement about hormone drug sideaffects. He was old school and wouldnt listen to my questions/concerns. New, younger onc neva suggested ooph but happily agreed was good option when I requested. My treatment has all been through private insurance though, so dont know what obstacles I'd have faced on the NHS. Nonetheless, its the same doctors we see and their advice we use, despite who pays the bill!
Thanks so much for best wishes and same back to everyone about to go for it.
The only trouble I've had is the inital week starting taking Armidex. Every time oestrogen levels go down more you get a kick in the pants physically and emotionally, but it has settled and the flushes etc, life in general is so much easier than on tamox and zol.
With a yearly bone scan to keep an eye on things, calcium supplements are available, which dont have horrible side affects.
thinking of everyone who's been there and going for it xxxx
I hadn't read this thread before but just wanted to add my two pennyworth! I had BC initially in 2003, strongly ER+, had WLE, rads, Zoladex and Tamoxifen. After 2 years on Zoladex I wanted my ovaries removed, I was 41 at the time and had completed my family. I was talked out of it by my onc and surgeon for the same reasons as listed above. However last year I was dx with secondaries to the bone and I am convinced they started when my oestrogen levels rose again after coming off Zoladex. There's obviously no proof of this but it's my opinion. I have now had chemo for the bone mets and a local recurrence and went onto Zoladex, again, afterwards. However this time I insisted on getting rid of my ovaries and had them ablated with radiotherapy in November last year. This is another option to surgery but not to be taken lightly as I suffered with symptoms of Irritable Bowel Syndrome for about a month after - not much fun. I avoided surgery due to having previously having had a Caesarian so would have probably ended up not having keyhole surgery. It is interesting how different onc's have opposite views about removal of your ovaries but I would say insist on what route you want to take, they can't refuse you and there shouldn't be a need to pay for private surgery. It's your body and your life after all.
Couldn,t have keyhole surgery as had to many adhesions in stomach from 2 other ops i,ve had in past, still recovered quite quickly, couldn,t drive for 2 weeks,Think most surgeons try keyhole first then if carn,t do it do open surgery, good luck
Im due to have oopherectomy in July and was wondering if you also had op by keyhole? If so, how long after could you drive/lift things?
I had ovaries taken out last April was also er+ have had bad night sweats, hot flushes, now on veniflexin which has lessened them,would make the same decision,Wanted to give myself the best chance of it not coming back, cause even 3yrs on I still think it,s come back with every lump, bump and pain, this illness has does my head in
Heres a link to some off the side effects of oopherectomy i had mine done in feb along with hystrectomy the benefits outweighed any side effects for me. Hope this helps and good luck. Keep us updated on how you get on.
I'm due for my ooph on 20th May. My consultant was more than willing to do it straight away. I have been diagnosed for 2nd time with oestrogen + cancer so I want to get rid of oestrogen. I cannot seem to find anywhere that mentions the side effects of ooph op. Can anyone point me in the right direction. I'll still go ahead with it anyway but would liek to be forewarned and fore armed.
I have sent you a PM too but I will let you know the outcome of the 11th May appointment. As yet no reply to my faxed letter to the surgeon...honestly wasnt expecting one.
Will keep you all posted.
Custard - I am very intersted to read your take on the 'ooph'.
I was dx at 38 and will be 40 this year, and am Oestrogen positive (and HER II positive). Finally after a year of chemo, radio and surgery my periods came back last week. I am now looking at the options available to me including Zoladex and ooph and am in a real quandry. I don't plan any more kids so that's not the issue. The idea of reducing my oestrogen levels is a complete no-brainer as far as I'm concerned in terms of improving my prognosis, but I am so worried about libido levels etc, and the impact that will have on my personal life (and marriage does take a bit of a hammering anyway after a cancer diagnosis). Will be interested to find out what you decide to do..
Sorry to meet you under these circimstances but just wanted to say hello and good luck with your chemo and treatment. I was 39 at DX (40 now) but didnt have chemo as I said invthe thread I had a choice of treatment routes so am always in awe of you ladies out there going through it.
I will keep you all posted with my mission details.
Love and luck to all.
what a read ..... Im quite new to this bc diag just over 5 weeks now right mast and just started first chemo (sick as a dog still !!!)
Ive always had gyni probs policistic overies fertility probs ovarian drilling ....
And when younger always thought in later life ( bit eariler than thought 39 yrs now )would have probs down there...
Since reading this post im goin to metion this as i was told i was hormo pos 8 out of 8 they said and id need drugs after ect ...
Removing my overies was never mentioned and as they have never seemed to work from the start may be it something to think about
(take my mind of feeling sick )
Will continue on reading with interest thanks ladies
Hello there all
Thanks as ever for the support and suggestions.
It must be fate you posted stillstanding, I have faxed a letter to my consultant only today to say I intend to call them out on this one. When I was given my treatment options one of the deciding factors was that they would be removing the ovaries so thats what I said in the lettter. I explained that I am extremely anxious about the change in decision and am aware of the negatives and also explained that my GP is on board with regards to monitoring bone thinning etc. I have informed the surgical consultant I have an appointment with the oncologist on the 11th May and intend to discuss it at length then and as he will be in clinic too I have invited him along to the party!!!!
Wish me luck.
After having had monthly zoladex implants for 4 months and fighting with my onc for a referal for an oopherectomy, I paid to get it done privately as I am highly ER+ and in my mind it made perfect sense to remove all oestrogen from my body.I did have a patial hysterectomy almost 8 years ago to remove fibroids but was told my ovaries would not last longer than 5 years after that, yeah ok!!
I hated the side effects of zoladex and wanted to stop it as soon as I could.
I just wanted to let anyone know who is thinking of this op that sometimes it doesnt go exactly according to plan, I had been warned that there was a possibility of abdominal surgery instead of keyhole if things werent straightforward, but a very low possibilty.
I awoke from my op with a 12 inch vertical scar and major abdominal surgery, one ovary was embedded in my bowel, so a section of the bowel was removed and the other was stuck to my bladder, as you can imagine my recovery is long and slow.Funnily enough, gynae told mr afterwards that my ovaries were as large and 'ripe' as a 2o year old!
I know that the vast majority of keyhole oopherectomies proceed with no problems and a very quick recovery, but bear in mind that there is a risk, albeit small that it may not. You do have to sign on the consent form that you understand that you may have to have abdominal surgery.
Saying all this, I wouldnt hesitate to make the same decision again
I had my ovaries removed 3 years ago (aged 33) not had kids which has always made me sad - but anyway i was on zoladex for 6 months and asked then to have my ovaries out as realised as i was oestogen positve and had a secondary by then that kids were outta question anyway, so i requested a oophrectom - i had to have 2 appointments with consultatns as they too gave me the talk too young etc problems later in life etc, but i knew that i had to take the risk. 3 years on and i am fine. dont have hot flushes, not aged, or anythin (yet) and no aches in bones - altho take bondronat as had spread in bone. but am good.
so i thinkg you need to go back and say you want this op. now. be firm with the consultant (could say you have researched and know what the side effects could be and willing to accept that) and if not ask for second opinion to see another consultant you are entitled too and i have done that twice now and its fine to ask.
hope you get on ok and get the oophrectomy done. (easy op - think i was only off work total of 2 weeks!)
GOOD LUCK! :-)
sorry didnt mean to depress anyone with the thought of weight gain. Its not too bad, just every pound is that bit harder to lose. On the plus side since no periods or oestrogen I havent had a single spot (never had them until in my 30's so not getting any is a huge bonus), I used to suffer migraines pretty much one a week and now only get a mild headache about every 6 weeks or so, my leg hair seems to have got less and finer, my hair on my head seems to be growing faster than ever before and the obvious one no periods. I like to think of the plus sides as the silver lining to the cloud.
Needless to say as far as I am concerned an early menopause is a plus for me especially as I was also 100% oestrogen positive.
The needle is fine as my GP gives me a local first, I just dont look.
Sandra...I also have a mirena in and love not having periods...
I have arranged for that to be removed next week, but hoping chemo has put an end to the monthly curse.
re: zolodex. I work for a Dr and we have patients coming in for their regular zoladex. i can reassure you that most of them feel like cr@p while they are on it and have many SE's including headaches, sore boob(s), fatigue etc. I have to admit that even the size of the damn needle is enough to send me running!
I'm in North Wales so will let you know what is favoured here,am strongly oestrogen positive too, have had a mirena coil for past 4 years and have had no periods at all,damn it just when thought had all my hormones under control they go and bite me on the bum !
I was on Tamoxifen and Zoladex but onc took me off the tamoxifen because it didnt put me into the menopause. I am going to the internet to find out what side effects people have from Zoladex because my onc ( who is supposed to be the best there is in Ireland ha ha) has never heard of anyone suffering from headaches because of zoladex.
Because my cancer was er+ would I better off going for a hysterectomy or oopherectomy ?? I have my family so thankfully I have no worries on that front
re zoladex I was at my docs today,haven't seen onc yet tho,but doc said they would give me a monthly injection first to see how I got on with it,if that's the route that I go down,then would have them 3 monthly......
I am just wondering if anyone has had horrible migraine type headaches from the zoladex when I spoke to my oncologist yesterday before my seventh injection,he looked at me as if I was mad and making it up about the headaches, I cant believe he has not come across this side effect or else he is really good at lying. Am I going mad or does anyone out there suffer from these headaches.
Oh god, not more weight gain....
I just gained two stone during chemo....
Think I will take his up with onc.
Thank you for reply
Thanks as ever for your replies.
Jan, Good luck for tomorrow. You sound like me with the zoladex and tamoxifen so am really glad to hear from someone with similar issues who is having the oopherectomy.
Pheebster, The zoladex is like having an instant menopause. My main problem has been hot flushes, weight gain and loss of libido as per the rest of us in here. I am on a tablet called chlonidine for the flushes since september and things have been much better since and since sorting out the flushes that has sorted out my sleep patterns a bit better which has helped me generally feel better about myself which helps with the libido issue.
I'm so grateful for all your help, as ever words of wisdom from the BC Babes. Whee would I be without you.
Be kind to yourselves ladies. Shonagh x
Hi Ladies....I am half-way through rads at the moment and have been referred by my breast onc to a gynae onc for the removal of ovaries.
She is of the opinion that it is the way to go. I am hightly ER+ & PR+ (both scoring 7/8), so your thread has been really interesting reading.
I am still undecided as to what to do. The gynae onc has said it is entirely up to me as it is preventative and therefore my decision, but I have also been recommend for 3 months zolodex following the surgery....this is my main bug bear.
I am 48 and pre-menopausal (though chemo has started some sweats) and I am wondering what effect the zolodex will have on top of the effects of surgery....
I just wanted to say good luck for tomorrow too. I had full hystrectomy and oopherectomy done 11 days ago and im fine up and about, although i have to stay on tamoxifen for the 5 years, ive yet to find out why.
Hi Jan, all the best for tomorrow x its not that bad, i too was on tamoxifen then zoladex leading up to my hysterectomy and oomph and yes they are nasty horrid drugs, so i was certainly glad to be off them. i assume that you are having it done via keyhole, so not too long an op, looking forward to hearing back from you so that we know your up and about again
lots of love
Although this was never proposed to me as an initial response to cancer (was 39 when dx), I fell out with with my original onc,a year ago and his replacement (much nicer guy, who listens) now agrees that a surgical menopause is better than continuing with temox and zoladex. With Arimidex of course for next 4 yrs.
I've had 21 months of treatment to have ample time to consider this side of things (also Her+) and weighing it all up, my decision is to take the surgical approach and get off tamox (had 1 yr but want to remove other risks, eg. womb cancer). They might be slight, but still there, which in addition to threat of secondary bc, being triple+, is too much to think about.
I am in for the oomph removal tomorrow, and though I may live to regret it re side affects.... libido etc (cant really see how it can be much worse than when on tamox and zol, had all the bad stuff already), as long as I live, that's all I'm worried about.
I just wish all our docs had a clear and concise view on all of this to tell us what we should do instead of us having to come to our own gut reactions (we have to make decisions along the way that we dont always know what the outcome will be). But at least today, I was uplifted to see, at last, some positive news in the papers about cancer identification progress and that "within 5 yrs" we might have a cure to stop cancer spreading. Let's hope its here in time!
If you have your ovaries removed you will not have any more periods. You will be in instant surgical menopause.
You may bleed for a few days after the ooph but that is just the body adjusting and the womb sloughing off the remainder of its lining.
as far as i know once the ovaries are removed you should go straight into instant menopause, you may have a little bleed if you haven't had a total hysterectomy as well depending on when on your cycle you get the ovaries removed. if you have your ovaries out with a total hysterectomy then you can't have any more periods at all. i think i am right, but if not then i hope someone can correct me.
Hope you don't mind me joining in.Am interested in this thread as i am due to see my oncologist in august to discuss my next step of treatment after zoladex.I too could not bear the thought of returning to having periods but from what i have been told even having an oopherectomy does not guarantee they stop altogether.Not sure if this is right or not.Maybe someone could let me know.gill x
The bit about Zoladex monthly rather than 3 monthly is that it is only licensed for use for bc patients on a monthly basis. Men with prostate cancer have it 3 monthly though as it's licensed for them. Think there are some concerns that if bc patients have on 3 monthly basis, the effects can wear off towards the end of the 3 months and so not be as effective. Or at least that's my understanding of things from my bcn, onc, surgeon and nurse that gives the injection !!
Firstly thank you all for your comments, as ever completely honest and hugely different views from all and certainly food for thought.
I still feel I would like to go for the ooph option and have a further year of zoladex so I have a year to fight the fight. My GP is convinced there is some sort of trial going on with the zoladex especially as they insist on having the monthly injection rather than the 3 monthly. I did have one 3 monthly at the beginning which did the job just the same but my onc wrote to my GP stressing it needs to be the monthly one.
I dont have a family history of BC in fact I am the first person to have got any cancer in 3 generations(possibly more) but just cant bear the thought of another menopause.
Thanks again ladies what I would do without you I dont know. I was so fustrated when I got the letter last week but feel much better now. I was told at the beginning of this journey by my BC nurse to just let other people be in charge for a while but I think its time I took control of my life again.
Love to all. Shonagh x
Hi Kitty, you are so right, i have terrible arthritic problems, high bp, and absolutely no libido, i am only 46 so this is quite bad, and the lack of support for the loss of your sex drive is nil! but saying that, i was not offered chemo, my periods were very regular, i still feel that i have done the best for my health in the long run by having it all removed, i can live with the aches and the horrible tablets, i did ask could i have something for the sex drive, but apparently its all hormone based and because of being highly hormone positive then it was a no no.
lots of love
ps, i know now the true meaning of "lying back and thinking of England"!
I had total hystrectomy and oopherectomy a week ago on the advice of my genetisist. Ive had bi-lateral mesectomy and recon after discovering ive got brca2 gene. I was dx with breast cancer in oct 07. Im 33 and didnt want anymore children so for me the the only option was to take everything out. My gyne wasnt so keen on the idea but because id been refered he did it for me. Im just curious now as to why ive still got to take tamoxifen for the next 5 years and then another tablet 3 years after that? Custard my advice would be if its what you really want then keep at them, if they refuse ask to be refered.
I've read this thread with a great deal of interest.
I had my ovaries removed in 1994, as an alternative to chemotherapy, as was the 'fashion' back then.
How I wish I'd opted for chemotherapy.
My ovaries were removed 'keyhole' by the general surgeon who had performed (very competently) my mastectomy. Unfortunately, the oopherectomy didn't go nearly as well. Despite removing, allegedly, two complete ovaries, my oestrogen levels never fell sufficiently.
Result: more keyhole surgery to track down a suspected piece of 'rogue' ovarian tissue. None was found. I was told they thought it might have 'migrated' a bit. Oestrogen levels remained too high. I was then put on Tamoxifen (no AIs back then), which the oopherectomy was supposed to avoid.
Still kept having 'periods', which got heavier and heavier. Kept on having D & Cs, which were no help, until in 1999 admitted to hospital because I was losing so much blood. Full hysterectomy a few days later. When it was removed, my womb was found to have swollen to over twice it's normal size.
I'm not saying oopherectomies are a bad thing; quite the contrary, I think they must be an essential part of bc treatment or they wouldn't be carried out so regularly.
But every surgical procedure carries with it risk and the possibility of unforeseen, unintentional and long lasting consequences.
The oopherectomy issue is perhaps one of weighing up risk vs quality of life. Without bc in the equation, any woman under 45 who had her ovaries removed would be offered HRT.I had Zoladex for two years and could have had my ovaries out afterwards but with onc's agreement haven't. Even after menopause a woman's ovaries secrete testosterone which is 'implicated' in libido- an area which is seldom dealt with by the medics, I think. Men on Zoladex for prostate cancer often have 'treatment breaks' so that they can 'indulge' again. It's a serious decision to remove a pre-menopausal woman's ovaries when she can't have HRT. Heart disease, bone thinning, vaginal atrophy,libido difficulties..can be a result. Obviously, sometimes it's worth it since the risk of recurrence/ progression outweighs any other consideration. But it's not totally straightforward.
I had my ovaries removed a couple of weeks after my mastectomy (at the same time as my axillary clearance.) There was no hesitation at all - they trusted my research and ability to make my own decisions - I met with the gynae consult and that was that.
I am very pleased that the primary source of oestrogen was cut off 8 months ago instead of having to wait until chemo and rads were finished before addressing the hormone issue. I was 43 when I had the ooph and it plunged me straight into surgical menopause which has enabled me to take Arimidex (which I favour over Tamoxifen because it does not carry the endometrial cancer and thrombosis risks.)
The only issue I can see for not permanently removing ovaries is that it is obviously irreversible. But as I am 100% ER+ why would I ever want them back?
My gynae said the same Lolly - women with breast cancer are at increased risk of ovarian cancer so why not get rid of them rather than just chemically supress them?
I would suggest to anyone having difficulty getting oncs and breast surgeons to agree to it - perhaps ask for a referral to a gynae consultant. Ultimately it will be his or her call anyway and they may take a different view from your onc.
Isnt it weird how different hospitals have different ways to treat us.
My onc has referred me to have my ovaries out in a couple of months time. I have been on zoladex and tamoxifen for almost a year now, but right from the start, without me even asking, I was told that I could have my ovaries out at anytime and stop the zoladex. I have now decided that the time is right to go ahead with the op. My onc thinks it is a good idea cos then you also dont have the worry of ovarian cancer too. Im 35.
I asked about having my ovaries out a couple of years ago when I was 44. I too was told it was not a good idea - and was given the reasons why. But being two years ago, and with my hopeless memory I cannot remember the reason. But I know I was happy with the explanation.