Hi,
I have a date through for three weeks time to have them out (diagnosed Jan07, chemo, rads, double mx and have mutation on BRC1 gene)
I have so many questions and am getting scared now because I am thinking I am going to be a wreck mentally afterwards- will the menopause send me doo lally???
I would like to know
How much scarring you end up with
How long am I likely to be off of work
How painful is it
How long before you can drive again
and generally what to expect…
I think they are going to put me on HRT as am triple negative and I am 36.
Any advice and answers would be greatly appreciated (especially the doo lallly part!)
Thanks in advance
Best Wishes
katyx
Hi Katy,
wow a lot of questions! I can only comment on one really, which is about the scarring. I was talking to my onc today about ovary removal and he said they would do mine by keyhole surgery so scarring and recovery time would be minimal. I would then go on tamoxifen as mine was oestrogen pos. Don’t know if early menopause would send you doo lally ( i’m there already lol ) but obviously there would be hot flushes, possible weight gain but on the plus side no periods.
Hope this helps
Take care
Caz x
Hi Caz,
Thanks for your response- My ovaries will be removed via keyhole surgery. I am not so concerned about the physical effects, but I have to say that I am seriously concerned about going through the menopause! This op is bothering far more than the mastectomies that I had and I think its because I am very frightened about how I will be affected mentally after it (if that makes sense)
I am also concerned about my work as I have had so much time off due to the cancer and my operations in the past two years, I’m sure they must be getting fed up with me.
I am also a bit bitter over this op because it is not my choice-although I made the decision to go ahead and have them out, due to the stats that I was given on my chances of contracting ovarian cancer- there really is no choice, so I just have to swallow it really.
Sorry for rambling
Katyx
Hi Katy
I might be able to help you with a few comments. I had my ovaries out on December 8th last year, it was done via keyhole surgery, I stayed in hosp for less then 24 hours. The scaring is very minimal, now only after 6 weeks or so. I have to say though that I was under the impression from the surgeon that it was quite a straight forward ‘little’ op, I dont want to scare you or anything, but I did find the recovery alot more difficult then expected (quite painful to the tummy area) but having said that my little boy was off schoold poorly for the week I came out of hospital, so I didnt get the chance to fully recover before having to look after him. On the plus side I had the op on the Monday and on the Saturday and Sunday I was in London for the weekend with my friend, and managed it ok, took taxis everywhere as was struggling a bit with the walking up and down the tube steps.
Regarding work I would say at least a week off if not two. Im still off work with my BC treatment plan anyway, but I would have taken at least two weeks. I was driving after 1 week and didnt find it a problem.
As for menopausal stuff I had been on Zoladex injections for the previous 3 months to chemically stop my ovaries from working until I had them out so was already suffering a bit, but its not that bad for me (everyone is different, so its a bit hard to comment) I get hot flushes, but not that often, not even every day. I get night sweats sometimes, but again not every night. My problem was the lack of paitients, I was on a very short fuse, and it really got me down, I have now been given anti-depressants (which I really didnt want to take, but needs must etc) and have been taking them for a month and have improved my mood loads. I couldnt have HRT as my cancer was highly ER+, hence the decision to have ovaries removed.
I am also 36.
Think Ive told you everything, if theres anything else you want to know, just ask.
Best wishes
Vanessa. xx
Hi Lily0
I had mine removed Jan 08 (BRCA2), like you no real choice. Stopped in hospital one night (Thursday), off work the following week. With hindsight 2 weeks may have been better as ached alittle bit if did abit too much. Was able to drive within a week after op. Have 2 little scars on tummy about 1cm long and a scar in hairline, but not many people see that one, lol.
I did suffer from hotflushes, restless nights and was abit irritable, but I had also changed to femara from tamoxifin at same time as op, so not sure if this also contributed to menopausal systems. Luckily in my case they weren’t bad enough to take anything to help. After 6 months or so everything settled. I still have hotflushes maybe a couple each day but they arent too bad and over with very quickly. No problems with thinning bones as already on strengtheners as have bone mets. Don’t regret having it done. Would have been a bummer if ended up with ovarian cancer after managing to stablise mets, lol
Take care xxx
Sorry forgot to mention I was 44 at time of op. so a little older than you.
Hi Lynni and Vanessa,
Thanks so much for your comments- am feeling slightly reassured. You both sound so “normal” about it now, even though yours have only been done recently Vanessa.
I have visions of me being this irritable grumpy “dried up old prune!”
Do you feel “normal” like you did before you had the op, or has your life changed in any way?
I know this seems like a freaky question, but I have it in my head that going through the menopause will change me into someone beyond recognition- maybe its just my ignorance of what actually happens to your body or the fact that I am now contemplating entering a period of life that I was not expecting to come until I was 60 or so…
Hope you’re not offended by my questions and can understand what I mean (I dont even know if I understand what I’m trying to ask myself now! lol- maybe its already started-ha!
Best Wishes
Katyx
Hi Katy,
If you take hrt then that will counteract the menopausal symptoms. I had my ovaries removed 3 years ago when I was 42 and I can honestly say I haven’t suffered at all apart from minor night sweats and I don’t take hrt. I doubt you’ll end up a ‘dried up old prune’!
Hi Katy, I dont mind your questions at all. I can honestly say that I dont feel or look any different then I did with my ovaries. Noone would know that I hadnt got them if I didnt tell them, and to be honest, they have already taken my boob off which is a lot more visible and Ive got through that ok. I dont feel like an old woman, but then I never had the view that I was loosing anything really, more so that I didnt need them any longer and it was improving my chances for the future, and with two young kids that is really all that matters to me is that im here for them growing up. I guess its all about how you view things, and we all vary from person to person.
I dont think its changed me having my ovaries out, but I would probably say that getting BC has!!!
Do you have children already? Do you want them/more? I can see that that would be a very difficult decision to make, but reading your posts you dont mention this as being a concern.
Ness1.xx
Hi Ness,
Thanks for your response- yes, I do have children- they are 8 and 6 and I have decided that I dont want anymore (well, I probably would have had another one- I was very much if it happens, it happens, but then I got BC and the decision was made for me really) It is soooo important for me to do everything in my power to stop it recurring which is why i had double mx and am going down this route- if it did come back and get me (heaven forbid) then it would be extremely important to me that my children knew that I had done everything i could to stop it.
I had immediate reconstruction both times after the mastectomies, kept my nipples and my surgeon done a fantastic job- so much so that after the 1st op, when I woke up and peaked under the gown, I completely freaked out cos I thought he had just opened me up, found more cancer and sewn it back up again- thats how normal it looked- so I never ever really felt as if I lost my breasts- they have always been there albeit a bit harder to the touch.
This op is scaring me so much as I think it is going to affect me mentally and I am a lot more worried than I was with the mx’s. Its really hard to explain why seeing as they were a much more major op, but I think it is because they didnt really affect me, whereas this one will. I am not at all bothered that my ovaries will come out- its the after effects which concern me.
I am glad it hasn’t affected your life much- especially after such a short time and you have really made me feel more positive about it- thankyou so much
Best wishes
Katyx
Hiya, similar position to you brca1 so not much choice. Im 35 and had it done in october and cant take hrt cos eostrogen positive. I was really worked up about the emotional side of it as widowed and no children but like you had decided would do everything I could to try and reduce the risk. I was a little weepy more jsut cos had more surgery. I had to go in day before, stayed in day of op and out morning after, mainly due to having to travel 3 hours to get it done keyhole. I must admit Ive handled it much better emotionally than thought, was really worked up but then when done I just thought well its done no going back. I was then started on arimidex and bone strengtheners, so this and menopause terrifed me - I can honestly say, like chemo and other things not as bad as my mind was thinking. Few sweats nothing tooo bad, cold fingers and few aches and down times but to be honest I had these since DX anyhow, so fingers crossed all goes well for you.
Im about to start looking at recon and this scares me more than any of the other treatements/ops cos Im choosing to do it - such a wimp at Ops xxxx
Hi Katy
Pleased I have managed to help to make you feel a bit more positive. Its so hard going into the unknown.
Ness. xx
Hi Lily0
Like others have mentioned I don’t feel any different either. I can’t have HRT either, but GP told me after op if side effects got too bad there were treatments she could prescribed to help. But to tell you the truth didn’t need to was able to cope most of the time but it was reassuring to know help was available. I must admit when doctor explained side effect before op I nearly had second thoughts, he painted a bleak picture, he give me the worst senarios i think and it enede up being no way near as bad as I expected. But hey ho you can always come on this site to let rip when you feel the need.
Hi Lisaf hope your recon goes ok, my sister had one last year, shes chuffed to bits with results.
Take care
Hi Lynni, Ness and Lisa,
I cant tell you how much better you have made me feel. I think my gynea painted a bleak picture of the menopause like yours Lisa and I have totally freaked over it- BTW,go with the recon cos whatever you think it will look like, I’m sure it will end up 10 times better than you ever imagined. I am eternally grateful to my surgeon and have never regretted it- My boobs look fab and as normal now as they did before the mx’s- they are just harder to touch and a lot more perky.
I am just gonna go with it now and whatever will be wil be- if I post in a month or so ranting and raving then you will know that I have lost the plot and it really did send me doo lally-ha!
I have acccepted that whether I like it or not, they HAVE to come out- maybe I’ll have a party to wish them farewell along with the odds of contracting ovarian cancer-lol!
Thankyou again- your replies really have made a HUGE difference to the way I am viewing this upcoming op!
Best Wishes
Katyx
You will be fine, I really hope that our experiences are the same for you too. I will keep checking on this post to see if you have any further questions (but I think between us we have covered all the bases,LOL)
And please let us know how the op goes.
Good luck with it.
xxxx
Ness1 has said it all there and yes let us know how you get on. Any questions you know where to come.
Good Luck and take care xxx