yeah I have already had the Zoladex, the tamoxifen and the tax so maybe i have no oestrogen left anyway! If it doesn't get any worse than this hormone wise then its pretty ok I would say - probably famous last words eh!
Mine has already been zapped by the Zoladex, which effectively removes all oestrogen in two weeks. I presume it is pretty much the same following surgery. After that, it is just what's left in our fat and bones. I did not have any real increase in menopausal symptoms - but the second lot of chemo I had was Tax, and I had horrendous night sweats with that, so I don't think there was much more oestrogen to go!
Glad you're feeling a bit better Ruby,
Well done Daffodil - I know what you mean about the moving around bit!
I am a lot better now and am off the painkillers, still feel a bit like my insides have been blended but then I guess they have in a way. No hormonal changes have been observed so far - how long does it take for all your oestrogen to depart - anyone know?
All the best Dafodil - get lots of rest, and fingers crossed for a speedy recovery x
Ruby, hope you are feeling a little better x
Hi all, I am also out now, had mine done monday afternoon and came out today, Thurs morning. Whole lot gone, uterus cervix tubes and ovaries in open procedure, not really on pain relief now as the pain is really just along woundsite and only when I move so not sure it would help.The problem is moving really, Im ok when down and not too bad when up but the bit in between is murder!!The lady in the opposite bed had hers done vaginally and it was much better out a day earlier and no wound to worry about, but that said its not too bad and we all survive whatevers thrown at us dont we?
Poor you, you must feel like someone has put a blender in your insides. Keep on taking the painkillers (have you been warned that Tramadol can bung you up? Might be an idea to keep an eye on that). Hope you are starting to feel better now,
Sorry to hear that it was not so straightforward. Hope you feel less pain as each day goes by. Not surprising that you feel weepy, hormonal changes plus all the stresses of surgery add up.
I am due to have an ooph in April, waiting for a date, so have been reading this thread with interest.
so sorry to hear you had an awful experience.... Keep up with the pain killers and hopefully your insides will start feeling better soon.... Big hugs xxxx
Well ladies I am out of hospital - I had an open procedure and if I am honest it was not a doddle at all, I had an internal bleed and had to go back to surgery for a repair. Was on the morphine pump for 2 days then on Tramodol, still cant stand up straight without it feeling like my guts are trying to escape! I am very envious of those who had this done laparascopically!!!
Was very weepy the day after I guess due to drop in hormones but not too bad since, early days I guess 🙂
Rachel vaginal hysterectomy is usually quicker recovery than open.... Mine couldn't do vaginal for some reason... Don't think they had funding or something like that.... And it was longer to do vaginal hyst and keyhole ooph.
Thanks Lulu, as ever!!Thats more like what I expected and hope it can be done vaginally which is, I think, the surgeons preferred option if not will try keyhole and open procedure as last resort so hopefully recovery time will be fairly quick. Just having last meal, sips of water til 6am but have had the mother of all hangovers today and dehydrated which wasnt the cleverest thing Ive done so will be sipping for England!Rachel x
when having your ovaries and tubes out its normal procedure to have keyhole surgery and be done as either day surgery or an overnight stay.
with a hysterectomy and oophorectomy it often cannot be done as keyhole surgery and is done in an open procedure and requires a hospital stay of 3-5 days... you are usually catheterised over night and connected to PCA (patient controlled analgesia) which is like a morphine pump you administer to your self.
i went in and had my op first thing tuesday morning and was home teatime on friday.
Hi all I had an ooph 2 1/2 years ago when I was dx with secondaries. Prior to this I had been on zoladex. I went in fasted the day of the op, which they did via key hole surgery and I was home the next day. Didn't find it particularly painful and you now would have to look very hard to see any scaring.
Good luck to all of you about to go through this. X
It was keyhole- so they made four incisions. I took the dressings off today, and they are all very neat! In my case, they have left my uterus- which I presume is standard, unless they have a good reason to take the lot. I have had a tiny bit of spotting since, but that is it. Interestingly I have not had a single hot flush all week.....but I have been on zoladex for months, so that had shut my ovaries down- I was still a bit 'hot' from time to time though, so that will be great if it lasts.
So, no periods and no Tampax to buy. No mood swings. No birth control needed. No spots. Even the menopause has it's positive points!!
Wow Tracey thats incredible that you were out so quickly. Which way did they do it? Here they say 4 days with day 1 being the day after surgery when they wont even let you out of bed because of catheter and drains. Usually pretty good at surgery so now Ive read your post am hopeful I will be in and out quick too! Like you 42 and on tamox, but only just finished chemo and rads for 2nd bout of bc. Having nasty period like pain on tamox which I hope will stop once ovaries are out. I think they say tamox is good for bones and will help stave off osteoporosis so hope can stay on it rather than AI. Anyway, good luck all and heres hoping for speedy recoverys!
TSR I stayed on tamox too and not gonna change to an AI as I get very little SEs from the tamox.... Iv been on it for 4 years out of the last 6 but had to stop twice cos I got hormone neg cancer and a recurrence of that... So when Iv finished treatment iv to go back on the tamox for another year for the first BC.... Don find it problematic at all..... Had more symptoms on Chemo and after my hyst and ooph than th tamox.
Had mine on Tueday night (24th Jan). I stayed in overnight, as it was late, and actually most of the next morning as I was waiting for my husband! But I still felt a bit woozy from the anaesthetic, so that was probably for the best.
So far, so good. I am taking the painkillers, but by no means all of them. Am really feeling great. I have been on Zoladex for several months, and have been told therefore that my menopausal systems won't get any worse.
I will also stay on Tamoxifen for another year, before being moved onto an aromatase inhibitor. What are other people's experiences of this? I'm 42, but am officially menopausal now......but I seem to be coping very well with Tamoxifen, so am not in a hurry to 'rock the boat.'
Good luck to those facing surgery soon,
Rachel and ruby there is a research trial called the genetics of familial breast cancer study which will look for gene mutations in women with bilateral cancer... So if both cancers you had were completely separate you can ask about this... It's done through the institute of cancer research..... Locally there might be some facilities in place, but usually they won't test you as an individual unless you fit specific criteria.... Having triple neg breast cancer under age 40 is one of these.... I have no real family history but had BC twice by 40 and one was TNBC and since then iv had a recurrence at 43.
Good luck to you both with your hyst and ooph.... I'm 16 months past mine now and all things gynae are fine.
Well Ruby, I am having my hysterectomy and ooph on Monday 30th so you will probably be up, out and disco dancing by the time I go in. If the NHS are doing buy one get one free do you think I could ask for a tuck while they are down there? ( Imean tummy tuck not a designer vagina!!)
Good luck, I am sure we are doing the right thing for the right reasons. I am waiting to hear about the genetic testing too, like you no history of cancer in the family but twice by the age of 42 looks a bit suspicious. Not had any reconstruction yet, both got to be done if I go down that route so we will see in the fullness of time. Actually better not let them take my baby belly after all in case I need it to make 2 new boobs out of!
Well I am booked in now for mine next Thursday the 26th Jan, not having it done laparascopically though as too complicated with my tram recon and mesh in place, gynae surgeon is going to do a caesarean style cut and tunnel under (makes me wince just writing that!) good news is breast surgeon is going to do axilla clearance on same day so two for the price of one, a kind of NHS BOGOF! I get three nights in the NHS prison and a couple of weeks feeling like someone has kicked me in the belly, still if it gives me an extra insurance policy it will be worth it.
I have also just been accepted for genetic testing despite there being no history of bc or ovarian cancer in my family, I was only 38 at dx and this is second time round for me and I was borderline as to whether they were going to do it or not, glad they are though.
Thanks Ness, what medication do you have to take to combat the bone density changes?
Are you having any other problems?
I was led to believe that the keyhole surgery was going to be a doodle - I didn't find it that way, I found it quite painful for a few days after and just laid on the sofa, but after about a week I was doing much better. It was a no brainer to me, I was highly er pos so having that op done was just another preventative measure. the flushes havnt been too bad really - they advised me that they would prob be quite severe due to my age - was 37 at the time. The main thing now for me is my bone density is decreasing quite quickly, but I do take medication to try and help combat that.
Hope this helps.
Ness1 that's the same situation I am in and I am seriously considering it.
How has it been?
Hi, I just wanted to add that I was offered the oopherectomy (and had it done) purely as preventative measure on grade 2 stage 2 bc. No family history, no spread, and no symptoms of anything wrong in that area. It was done pretty much at the end of my cancer treatment.
Can I ask what additional side effects (if any) you're having following your ooph?
Ruby, I had a salpingo-oophrectomy (tube and ovaries) a week after the end of my rads in October. I stayed in hospital one night and after about 4-5 days I felt pretty back to normal. I had the op because I am BRCA 2, so susceptible to breast but also ovarian cancer. I am 42 and was diagnosed with BC in February. I discovered I was BRCA 2 in June and decided to take everything off (other breast as well). The oophrectomy was really easy compared to the rest. Good luck !
Lisa I'm actually a genetic BCN.... We don't tested people who are adopted... We on do gene testing on people who fit the criteria.... That is an individual with both breast and ovarian cancer, somebody under 40 with triple neg breast cancer or somebody in a family with 4 breast cancers under age 60 or ovarian at any age in 3 generations.... Bilateral cancer counts as two cancers.
We have a number of people who have lost touch with family or who were adopted and therefor don't fit the criteria for testing.... Genetic breast cancer accounts for only 5% of all breast cancers, a further 15% are within families with a strong history and the final 80% are just sporadic and down to unlucky chance.... Even at age 20 breast cancer is more likely to be sporadic than genetic.
You can however ask for a referral to genetics if you want to discuss it... And there is the option of going private but the test costs around £3000. There is also a research trial that does testing if somebody has bilateral cancer or there are three breast or ovarian cancers in the family, but it can take about 9 months to get the results.
Ruby - presume your assertion that "if chemo stopped your periods there is a good chance you have already been pushed to menopause, therefore no need to get the ovaries out!" refers to having this procedure as a preventative against ER+ BC? There would be a need to have ovaries removed post menopause to prevent ovarian cancer in those at high risk of developing it, irrespective of whether they've had ER+ breast cancer or not. Best of luck with the op.
LibraLady - under the NHS in UK I don't think it's standard to test BC patients for BRCA genetic variations - but I stand to be corrected if things have changed in the past couple of years. You can always ask of course but there are some pretty stringent guidelines around all this and it is not just a straightforward yes/no test, it can be quite a drawn-out process with the chance of inconclusive/ambiguous results as well as false negatives and false positives. Not sure what the position is with genetic testing in the private sector as mine was done under the NHS. Lots of useful threads in the 'Family History and Genetics' section of the forum.
Thank you all for your comments - I feel better about it now.
I am having an ooph as I have had a recurrence and after chemo and Mx which I have had Ooph is the current recommended treatment for ER+ ladies who are young like me (I am 41)
I tried Zoladex two years ago and carried on having periods - I guess the hormones are strong in me! Already been there and done that with Tamoxifen and had a recurrence so that ticks that one off as an option for me, once I have had the Ooph they are saving the AI's for if and when the beast has another bash at killing me - hopefully never, but its good to have something in reserve!
I was booked in for an Ooph for primary breast cancer two years ago but was told tamoxifen was just as effective, clearly not for me!
Oh and if chemo stopped your periods there is a good chance you have already been pushed to menopause, therefore no need to get the ovaries out!
what if im adopted (which I am) and have no family medical history? do you think they would perform the gene test to ascertain my risk at all?
I had oopherectomy in july as I was so worried about BC returning . it took me a year to get a sergeon to do it as not common practice. had day surgery. I was fine driving in a week, doing everyth1ing as normal
Thanks Lulu and Puffywhiteclouds
youve answered my question, as I am ER+ and nobody has mentioned my ovaries, I am 39 and chemo stopped my periods 8 months ago. I always wondered why some women have oopherectomies and others dont.
Echo what Lulu says, as far as I know oophorectomy not performed in UK as a preventative measure for ER+ BC but would be done if there is a clinical need or as a prophylactic procedure if you're at high risk of ovarian cancer for some reason.
I was referred because I am a gene carrier and high risk of ovarian cancer.... The NICE guidelines do not recommend oophorectomy as treatment or hormone positive breast cancer as I think it's very controversial whether it actually reduces you risk of recurrence or not and there are alternatives such as zoladex injections which puts your ovaries to sleep temporarily for the time you are getting it.
I was lucky like puffy and jackx mine was very easy. I was referred for the oopherectomy because I had cysts on my ovaries. I also had the fallopian tubes removed. I was scheduled to stay in overnight, but as I had my op mid morning and had held down my tea, been to the toilet and felt OK, as was allowed home about 7 O'clock. I had 2 tiny scars and a soreish belly button, but had no pain at all. I did have some discomfort when I tried to bend down to unload the dishwasher the next day!!! but that was my own fault. I too was told to take 2 weeks off, but felt a bit of a fraud, as I felt 100%. I then drove again. I had one day of hormonal problems, feeling very tearful and hot flushes etc. But they went and never came back!
If the op does go ahead - good luck! (and don't do any housework!)
Hi Lisa - I was only referred to a gynaecologist for an oophorectomy because of family genetics investigations which showed I could be at high risk of ovarian cancer. As a matter of courtesy and medical protocal the gynaecologist checked with my oncologist that it was OK to do the op but apart from that my oncologist wasn't invovled, becuuse my GP referred me to the gynaecologist on the strength of what the geneticist had fed back. I encountered no resistance whatsoever from the gynaecologist who was happy to do the ovary op about 18 months after my mastectomy (as he wanted me to have recovered as best I could from the mastectomy and subsequest chemo and radiotherapy).
I don't think it is usual practice in UK to perform oophorectomy at the same time as a mastectomy unless there were an important clinical reason for doing so - of course you can ask about this and find out what's appropriate in your case but you may come up against the "not my department" mentality which some surgeons have i.e. breast surgeons are not gynaecologists and vice versa. It might also be worth preparing yourself with some answers in case you encounter some resistance because of the emotional/psychological impact of both of these operations i.e you might be told that the impact of doing both operations together would be too much to cope with. On a completely personal note, I found the loss of a breast pretty tricky to deal with emotionally but really didn't care at all about the loss of my ovaries. It's a very personal individual thing though.
I was pushed through the menopause by chemo so was post-menopausal when I had my ovaries removed. My female cousins who have the same risk of ovarian cancer (but have not had breast cancer) were both strongly advised by different doctors to wait until they were a few years past the menopause before considering an oophorectomy.
Good luck, I hope you are able to put forward a case for what you feel will be best for you, your body and your peace of mind, and that you get what's best for you in the circumstances.
May I just pipe in here and ask a question to all of you if you dont mind.
I am also quite worried about my ovaries, my BC is also ER + and I am keen to have them removed. Im 42, still menstruating like clockwork.
Did you meet with any initial resistance by your ONCS about ovary removal. I am so worried about the link between BC & OC and just recently had a CT scan as I was having pelvic pains and pressures which I was so very worried about.
When you had your Oopherectomy did you have this after your initial BC treatments or during. Im due an Mx when my chemo finishes around March/April, would they consider doing it then rather than going back in for another surgery?
Any advice you can provide to enable me to go in armed with a good case would be helpful.
Hi Ruby Thursday
I had a BSO on the 29th Nov, stayed in over nite. Apart from being crappola with aneasthetic like Lulu, I had very little pain more of a discomfort and took paracetamol for a few days.
Sweats have got worse but heho
Was driving within 2 weeks and tonite am celebrating after managing to do all my own Christmas shopping including the big Supermarket shop.
Don't worry too much I am sure you will be fine
I have put for you below the link to the area of this website where oopherectomy and subsequent treatment is discussed, hope you find this helpful.
Ruby - bear in mind that ovary removal is a really straightforward op (from a surgical and recovery perspective) compared to a full hysterectomy so please don't be discouraged by people's accounts of how they felt as a result of having a hysterectomy. There really is no comparison.
I had a hysterectomy and bso so had uterus, cervix, tubes and ovaries all removed in sept 2010 age 42, as im a brca 2 gene carrier so was at risk of ovarian ca..... I had a small 4 inch scar just below my pubic air so you can really see it.... I had three nights in hosp.... Also had the PCA (patient controlled analgesia) you can't actually overdose on it as there is a cut out so you cannot have too much however morphine can cause Headaches and nausea so I suspect this what happened in mabelines case.
I get horrendous post op nausea and vomitting after anaesthetic so it doesnt matter how much morphine I have or don't have cos I feel crappola anyway.... Bu that's just me.
I had my first hot flush when I was still in hosp and they ave never let up since but I just figure having hot flushes are better than having cancer.... I was back at work 7 weeks post op.
I did get a bit of an infection five months after my op and ended up in hosp on valentines day with peritonitis but a course of IV antibiotics and I was fine again.
Hi I had an ooph by keyhole back in September, and luckily for me it was a doddle also. I was signed off for 2 weeks but could have gone back after 1 really. Was on Tamoxifen before with hardly any side effects, now on Arimidex and no side effects so far.
Hope all goes as well for you as they did for me. xxx
Hi there i had ooph by keyhole. day op, just had bloated feeling for about 5 days and was back driving within 2 weeks.. on tamox so was already suffering hot sweats etc. They did get worse for a short while but did soon settle again and i just plod on now with a hot sweat her and there.. really nothing to worry about. hope it all goes well x
I had a prophylactic bilateral salpingo-oophorectomy earlier this year. It was done laparascopically. An absolute doddle. Needed no pain relief and had no discomfort. This procedure is usually done as a day-case at the hospital I attended but I only stayed in overnight because of previous medical history (BC). I was up out of bed as soon as the anaesthetic wore off. They insisted on signing me off work for 2 weeks as I'm in a physically strenuous job but to be honest I was back to normal straightaway. I'm on letrozole so was having night sweats etc. anyway and ovary removal did not worsen these symptoms.
Let me know if you want any further details.
Good luck, I hope it's as straightforward for you as it was for me.
I had a hysterectomy, bilateral oopherectomy, removal of cervix and falopian tubes in Apr 2008 due to having a 5cm cyst on the left ovary. As I was then nearly 48, they decided to remove everything and found I'd had severe endometriosis for years, undetected.
The op itself I think took about 2 hours and I have a scar from my belly button to my pubic bone, but I had more removed than just the ovaries! I was on self-administerable morphine after the op and I overdosed on it as I am petrified of pain. This was stupid as I ended up with a horrendous headache and sickness. So don't overdose on the morphine! The first day after the op I was pretty much out of action, second day getting a bit better, third day eating a sandwich, fourth day marching around the ward and fifth day, home! I felt fantastic but did do a bit too much walking around the house etc. and ended up in bed the day after feeling a bit lousy, so the moral of that story is....take it easy! I had staples in my wound which I had to go and get taken out about 5 days after I got home and I also started taking estrogen only HRT because I had terrible night sweats. I went for my post-op check up to the hospital about a month after and was told to come off the estrogen-only HRT right away as it's meant only for women who have their womb taken away and although I had done, the endometriosis meant there were still bits of the womb lining floating around my insides. I didn't use any HRT at all after that and just went cold turkey. I did have some sweats and hot flushes. The sweats died down after a month or two and the hot flushes lasted up until only very recently, but they weren't too bad and certainly not bad enough to entice me back onto HRT.I was back driving four weeks after the op. I was off work a total of 7 weeks.
Can honestly say I have never felt better after having it all removed. No more painful periods ever again. You'll be fine.
Good luck and God bless.
Any of you had an Oopherectomy yet and can anyone give me an honest (warts and all please!) of how long it took to get back to normal? drive? work? etc etc and what sort of level of pain relief if any did you need?