Sorry just got to get this off my chest. I am 40 (39 at DX) had WLE/SNB er & pr+ HER2 negative no nodes, had rads, am on 5 years tamoxifen and 12 months into 2 years zoladex. At the beginning I asked what happens after the two years zoladex as I will be still pre menopause. Oncologist said best route would be oopherectomy. Fine I said, I dont want children and that would put an end to most of the oestrogen production, they said they would talk to me more about it when my radiotherapy ended. I have now spent the last 12 months asking whats going on with it to receive a letter from my surgeon advising that he has spoken to my oncologist who says its not the best thing for me now.
I am absolutely BLOOMIN BLAZING. I know the downside is possible bone thinning later in life but honest to goodness. I have pointed out that I dont want children, not a single relative including grandparents(all lived into their 80’s) has broken a bone and I really dont think I can cope with another menopause again in however many years it may be.
I know I am moaning and there are much worse things out there than this but for the first time since I found the lump I feel like I’m just being patted on the head and sent on my way!!!
Just had to get that off my chest (no pun intended)
S x
Hi Custard,
How I hate how these people like to play God!
who’s body is it - yours of theirs? I gather by surgeon you mean the Consultant who did the WLE/SNB? If so then you are dealing with the wrong person as it is usually a Gynaecologist who removes your ovaries so ask for an appointment with one via your BC nurse and ask them to remove them. If they refuse also (can’t think why they would though)then ask to be referred to another one - which they have to do. Good luck!
Hi Clarabelle
I couldnt have put it better myself. I have an appointment with my oncologist on the 11th May so will have it out with him then and if no joy the BC nurse/gnyne sounds like a marvelous plan, thanks so much for the idea. I’m off for a cup of cammomile tea now, try to calm down. I dont know I had a lovely afternoon today, retail therapy and bargins to boot (got some martini glasses I have had my eye on in Debenhams and they have 20% off everything) and then I get home, open the post and BOOM!!!
Well kettle boiled. Thanks again
S x
Hi Custard, i had to fight to get my ovaries out as well, the onc was a bit funny about it, but when he found out that i was not going to shut up about it, well, he referred me to a very nice gyni, who suggested with my family history that i had the whole lot out! even asked what when i would like them out, i asked him if he could get me out of cooking xmas dinner, so i had a total hysterectomy and ooherectomy on the 18th of Dec 2007, like you i had no intention of being on tamoxifen for five years then going through the menopause again, i was 44 at the time, but all the women in our family have been late with the menopause. so go for it, maybe you could get your appointment brought forward so that you can talk to you onc sooner, it sounds like this is really getting to you.
lots of love
Alisonxxx
Hi ladies
I just like to add that i spoke to my onc (i am er+) about having my overies out and she said it would be a good idea, so she reffered me to the gyna. As i have a family history, the gyna is going to do the full hysterectomy. As i am 40 and suffering menopausal symptoms and no need for my womb etc any more then i am happy to go through with it, also it will give me peace of mind.
I wonder why they don’t routinely do/offer an oopherectomy for er+ cancers.
Hiya, I, too, am having a real battle with my oncologist re an oophorectomy. I was strongly ER+ (8/8) (diagnosed Dec 07, age 37, mastectomy and reconstruction, chemo and now on Tamoxifen) but I have just been told that the risks of having the ovaries removed outweigh the benefits - but apart from osteoporosis and early onset of the menopause, I have never got a clear answer as to what those risks are - and I’d much rather reduce my risk of this disease returning than worry about thinning bones, when I can do something about that through excercise, for example.
I’ll be interested to hear how everybody gets on - but I shall definitely raise it again.
All the best
Naz
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.
Hi
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 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.
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.
Kitty
Hi
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.
X
S
Hi All,
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.
Good Luck
Leslee 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
Alisonxxx
ps, i know now the true meaning of “lying back and thinking of England”!
Hello all,
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 Shonagh,
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 !!
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
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.
Alisonxxxx
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.
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!
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
Alisonxxx