Was diagnosed with the BRCA1 gene in Jan 07 and have since had double masectomy with immediate reconstruction using the muscle from my back and implants. Have now been to see the gynae with regards to a hysterectomy as my genetic counsellor tells me there is a 65% chance of me getting ovarian cancer.
Was wondering if anyone can give me any info with regards to the op and side effects from early menopause and if HRT will stop all side effects. The HRT man tells me I will be able to take HRT as my tumour was not hormone fed ( I had breast cancer in Aug 05) but when I saw my gynae she was very adamant that I think about all the negatives that comes with having this op. Also is it worth me having complete hysterectomy as we are not going to have any more children.
Hi there,
I was told I had a BRAC1 gene last year. Had double mast. having ovaries out on 1st sept. Will let you know how it goes. Definatly feel I am making the right decision. My tumour was not hormone fed but I am advised against HRT. The op. is done via kethole and a s a day surgery patient. I waas told that They advise overies and tubes out but not hysterectomy. There are very strict protocols that the surgeon should follow to ensure the best outcome.
Do you mind me asking how painful recovery from the keyhole surgery was? I’m considering it long term too, awaiting results from genetics but have to be prepared that it’s quite probable for brca 1/2 in my case and facing several years of hormone therapy it might be wiser for me to just whip them out as they say. I know there’s a lot more to consider than that but would be nice to know how mad the pain will be if I do in the short term.
Already had bilateral mastectomy this year but not recon (2 tumours, 1 in each breast so op would have been too long and I like my muscles where they are
I am awaiting an appointment with the genetics people but its very likely that I have the gene (my Mother and I have had ER/Pr neg BC), so I am assuming I will get ovaries removed too.
Thanks Ruth, it will be great to hear what the effects are. I am already in the menopause because of the chemo.
hiya all
Highly possible I have the gene too but either way cos my grandma died at early 40’s from it already suggested ovaires out so have appointment to discuss mid September - will let you know any info then. Im such a wuzz terrified of ops!
x
i have had a complete hysterectomy and ovaries removed and had a good recovery, back to normal for about the past three weeks, put it this way i wasnt going to hang about for cancer to rear its ugly head anywhere else, sod the stats and sod the side effects, its not them that life with cancer
Anna
Hi all i am a new user and found the site great so far. i am brca2 positive and 3 weeks ago i had the ovaries and tubes removed for prevention. it was done through keyhole and i was in and out of hospital after 1 night. surgically it is amazing no problems at all. the menopause kicked in straight away though after about 6 days as apparantly your body has enough hormones for 1st 5-6 days. then it hits you and for me quite severe i take 4-5 flushes an hour and feel really tired, night flushes are easing slightly. persistant headaches are also extreme. sorry to sound so negative but its best being honest!! im 31 years old and not 100% on hrt yet as all the professionals all have diff opinions as to whether i should take it or not so in the meantime i am avoiding spicy foods and taking a lot of soya products. i think as a younger lady i played down the effects of the menopause. despite this though i dont have any regrets as at least i have cut my risk of ovarian cancer. good luck all x
I was told I have BRAC1 gene back in 2003 (I think) and stupid me did nothing about it. Currently having chemo for IDC. In my defence I was only just turning 30 and single. Having discused my options with the genetic team I was told ovary removal would reduce the risk of bc, but I hung about because my sister has had bc twice and all the treament that comes with it. She too is single and I felt I wanted to hang on to my ovaries until she had decided about having children. This was purely on the basis that she most probably couldn’t have her own children without the help of my ovaries because of the chemo. Just as we had got round to the conversation (not an easy one) and the final children decision I had found a lump and here I am today. Luckly for my sister she had decided to settle for a life without any children.
My genetic team said if I was to have my ovaries removed I wouldn’t be able to take HRT (even before dx) because this is just replacing the reason for having them removed in the first place.
Luan - my team also said having the brac1 gene increased the chances of ovarian cancer, but since getting the gene test I have had a transvaginal ultrasound scan once a year. Its not pleasent but no worse than having a smear test, and it give tou peace of mind.
Ruth - I will give you a nudge if thats ok, because I am very interested as to how you get on. All the best for the procedure.
Sugarsnap
Please can I ask if you have your TV scan done via the UKFOCSS trial?
I have had preventative mastectomies and I am, for some reason, having difficulty deciding whether to have my ovaries removed. I am having annual scans and blood tests for CA125 on the trial I mention above. This gives me some reassurance but wish I could decide on surgery or not.
I will continue to read this thread with interest to hear how Ruth gets on, although I do not think I could live with the symptoms anon1 is having.
hi all,
i was having ca125 test regularly and also ultrasounds but its such a gamble and it doesnt help that you get conflicting advice from surgeon to surgeon. your age is so important too as menopause is more severe when your a lot younger. i had them removed as my family is complete and i couldnt handle going each year and the worry that followed waiting on test results although im struggling with symptons i do have peace of mind. but we are all different and whats right for 1 person may not be for another. x
Ruth- I was told by the HRT man that I could have the HRT as my tumour was not hormone fed and because I have had the double masectomy- the risk of breast cancer from the HRT is very minimal. Also they advised because my family is complete I might as well have the whole taken away- funny how different consultants advise different things isnt it? Do u mind me asking how old are u? I am 35 this year. Also do u know what the strict protocols are for the surgery? Good luck for today- will be thinking of u…
Also sugarsnap (sorry dont know your real name). So far I have had 2 internal ultrasounds- one in Jan and just one on Friday. I find them alot better than a smear actually. It’s good cuz they tell u straight away if the ovaries look ok. I also have had the CA125 blood test done- again once in Jan then repeated 3 months later as raised slightly to 48 (apparently normal should be between 30 and 35). The repeat showed a normal reading. Again have just had blood taken again. The problem is that u cant rely on the results of these as they are not reliable. I have read many articles that state alot of false positives occur because the CA125 can be raised due to other things ie infections etc. I have asked my new gynae for 6 monthly screening but she states this would cause too much confusion and has offered yearly only. Although I know the screening is not reliable I feel every 6 months would make me feel I am being monitored better - at least until 40, which is the age she has advised me to look at having the op.
Anon1- Sorry to hear u are having really bad symptoms- maybe this is why the gynae would rather I wait till 40. I suppose the younger u are the more your body is not ready for it. All that I keep thinking about is that the cancer can kill u but the effects of the menopause cant- it can just debilitate you in your everyday life. I know that I would much rather have the latter expecially as the symptoms come too late for the ovarian cancer and this is what worries me.
hi luan,
thats exactly what i based my decision on i felt i would go through the menopause at 1 stage in my life anyway so i would rather that than cancer especially when i have seen so many people in my family be diagnosed with it due to the brca2 gene and on a bad day i appreciate it could be so much worse. x
Hi All,
Just wanted to add my experience to this thread.
Was diagnosed last January aged 34, have history of breast cancer on fathers side and have had the genetic test- they have found a gene in me that has previously been undiscovered??? so you may describe me as a freak!?! Because of this “rogue” gene, they have DNA’d both my parents to try and prove that it has come down my dads line (the genetic link) and are treating me as a BRCA1 case.
i have had double mastectomy and reconstruction and saw the gynacologist today. He offered me screening or to take my ovaries out. I immediately, with no hesitation told him that I wanted them out (I had decided this on diagnosis along with the preventitive mastectomy) The Gyne then told me that, in his opinion, this was absolutely the right thing to do as he was not convinced that ovary screening was successful enough and did not have enough statistical results to warrant a preventitive outcome. I asked him if, as I had previously been advised, I should wait until I am 40 (am 36 now) and he said- No- I should get them taken out as soon as possible as was high risk
As I am triple negative, he advised fitting the Marina Coil at the same time which would release homones and could stay in place for 5 years and he said I would then only need one HRT tablet a day (anon1- how many tablets do you take???). he said that, this way, it really would not affect me too much.
Has anyone else had this done with the coil fitted? and what are your symptoms.
Am desperate to hear of others experiences with this so i can prepare myself- the way he was talking, I’ll be back tomorrow having them out-Ha! (seriously, don’t think it will be that long though)
Any advice really appreciated
Katyx
hi katy sorry i have just came across your question. im not on hrt its been 1 thing after another. my surgeon told me pre-op no hrt would be given, my gp said no hrt and genetics saying i can have a 3mg tab once a day when breasts are off in around 6 months so im just trying to deal with this… not easy though. my friend brca1 took 5mg patches the morning after the op. i think it depends heavily on age, brca1/2, hormone receptive cancers etc… sorry its so confusing xxx let me know how u get on
Hi Anon,
Thanks for your reply- very coincidental as the letter came through today confirming that I am on the waiting list. Have some more questions if thats okay
How long did it take to come through for you?
Do you have mood swings/ periods of depression now?
How long before you could go back to work (I am only planning a week off- is that realistic?)
I have since read loads of negative things regarding having my ovaries removed, and although it wont change my decision, I am getting slightly concerned as to if it will effect me much mentally and in my lifestyle.
I feel that, on the odds they have given me- I do not really have a choice and removing my ovaries is the less of two evils rather than getting cancer there
Thanks
Katyx
hi katy, hope ur okay…
when i made decision to go ahead with operation i was on waiting list apparently 15 week waiting list but it was longer as my surgeon moved to a new hospital and new department( maternity how ironic)… not normal circumstances reg surgeon so u should be on 15week list too… i took off 6 weeks physically i could have went back after about 2 as i really wasnt that sore. stiches come out between 5/7 days after op. mentally im 7 weeks down the line and regret going to work last week as i didnt feel ready but will i ever?? katy to be honest menopause is difficult and older people will tell u its nothing well thats correct for natural menopause as with that a small amount of hormones are atill being produced but surgical menopause is different as we dont produce any thats why we suffer more. i get a lot of hot flushes, headaches, crying and havent had a good sleep since op due to night sweats but katy i wouldnt do it differently as i wont get ovarian cancer and i can cope with menopause although extreme. it wont alter my lifestyle either as im determined not to let it. i cant anyway as i work and have a young family. u will be ok please dont listen to other people unless they have experienced the same as u ie age, reasons surgical or natural. where is it ur from?? if u want u can send me a personal message as although im on computer all the time i have been in other forums and dont use this as much i would get personal message prob straightaway… i was told about item in telegraph paper( which i dont read) but found it stating hrt in brca women may reduce breast cancer risk by 43% which is amazing so fingers crossed… xxxxx
p.s no periods just now but if i do start hrt i will get them as 2 hormones are being pit into body again and as far as im aware as im so young i need periods so that the lining of the womb doesnt gather up xx
Hi,
I have been to see the Geneology at Royal Berkshire Hospital, waiting for next blood test as going through chemo at the moment had just off a 1" lumptechomy (Sorry can’t spell) - Have previous history in family cousins who had breast cancer and died at the age of 41 43. I am a young 38 year old.
Diagnosed in May - op in June been off work on a cycle of 6 chemos had 4 so far. So next blood test they are checking my genes.
Feeling very nervous, sounds silly I do - but once you had the results of the genes did you made a decision start a way or did you wait.
hi nuttytart, you dont sound silly at all, your only human. i made my decision straight away and based it on what type of person i am as i think if u can have results and get on with day to day things and not let it effect u at all while thinking about it then fine. but im not i was so devastated when i found out i honestly couldnt feel my legs beneath me as although i hadnt been diagnosed i carried gene and in my opinion just waiting on cancer and i knew i had a chance to do something with it. thing is too my family tree is full of cancer and i didnt want to be another person with cancer. and i know i would of worried myself sick not doing anything about it… xxxx
