I’m 46 and have a BRCA1 gene mutation. I had breast cancer two years ago, treated by chemo and radiotherapy, and a lumpectomy last year. My mum died of ovarian cancer and other relatives have/had breast or ovarian cancer. I’m now contemplating preventative surgery.
I’m not considering mastectomies yet, though it is bound to be an issue that I return to. In the meantime, I have one specialist advising me to have ovaries and tubes removed (which I will certainly do) and another advising me to have the uterus taken out as well. This is the bit I just can’t decide on! Have any forum members out there had to take this decision? What affected your choice? Does anyone know what the most common decision is?
I should say that I have no family and now, obviously, have no plans to start one - my chemotherapy has put me firmly into the menopause era!
I’d be really grateful for any advice you would like to share. Thank you very much.
HI Alison,
I was going to post exactly the questions that you have just asked. I went for my genetic testing today and due to my family history, my age (34) and the fact I am triple negative, I am certain that my testing will come back positive.
I am having a mastectomy on my breast with cancer next tuesday and am having immediate reconstruction. My surgeon will give me a mastectomy on the other side in 6 months time. This was my choice regardless of whether I carry the gene or not. I also would have needed a mastectomy anyway as was not suitable for a lumpectomy.
If my genetic testing comes back positive, I am fairly certain that I will go the whole hog and have hysterectomy (although, have to say, I have not looked into the pros and cons yet- just my gut feeling) I truly beleive that if cancer is going to kill us, then nothing we do will stop it and it is fated, however, IF my cancer did come back, I would be fully secure in the knowledge that I did everything I could to prevent it- does that make sense?
Hopefully someone on this forum will be able to provide us with some facts and answers
Take care
Katyx
Hi Girls
isnt all this confusing/ I have just had results from genetic testing and my BRACA 1&2 are negative. I am delighted about this as i have a family history of BC and 3 daughters. I am having an appt with the genetics people soon to discuss it all. Will let you know how i get on.
Before i got the results i had a gyneocology appt. It was absolutely awful. After it i felt like slitting my throat. I dont know what was wrong with the Registrar but she was negative to the end.
She did not recommend having my uterus out as well as ovaries removed as it could cause a prolapse of my bladder. Then she said if i have my ovaries removed it could mean my already awful flushes could get even worse. Then the screening prog for ovarian cancer she informed me was not brilliant as if they scan one year and all is clear and you start with cancer right after then you could have a massive spread by the time the next screenin comes in a year.
I was absolutely speechless by the time she had finished.
I have a scan of ovaries and uterus in Oct and another appt please God i dont see her.
I am thinking of having ovaries removed at least i will know my menopausal status then.
Havent had a period since Feb 2006 2 months after starting chemo but with being on tamoxifen the onc wont do a blood test or say i am post menopausal.
Its a flippin mine field and i wish how i wish i had someone to talk too about it all who would give me some advice. I find the medics useless.
Im at the beginning of the process that you all seem to some or part way through. I finished my RT today after my 3rd primary… BC at 31 tongue and neck mets at 33 and now primary in the other boob. Got home and got a phone call from genetics that i am BRCA 1 positive… and they will refer me re increased risk of ovaries and also a referal for ? double mastectomy… im not sure where to start or what to do…!! and im a practice nurse.!! I’m 39 now!! I spoke to genetics nurse and apparently each op is done as a routine case… not urgent… did you find that?
I have a mutation of the BRCA 2 gene and had bc in 2004. I had a full hysterectomy and oopherectomy in 2005 when I was 42. The decision for me to have all uterus removed was made because I had endometrial thickening caused by tamoxifen. I don’t regret having the ‘works’ as I know have peice of mind that I won’t have any gynae problems in the future and don’t have to have any more smears.
Hi Alison. I am 48 and have had DCIS twice needed radiotherapy 1st time and then mastectomy and tamoxifen which I finished in Sept 05. I had a hysterectomy and both ovaries removed 8 wks ago. This was because a US scan revealed possible ovarian cancer (couldn,t believe that I had to go thru another cancer diagnosis) and due to the fact I also suffer with very bad endometriosis I decided on the works! I have never felt better. No menopausal symptoms. I feel totally free of the worry of all the female cancers that were always at the back of my mind. Also to remove the oestrogen is the best thing to do for breast cancer.With your family history of it I wouldn’t hesitate. I did keep my cervix tho as removing that may cause problems re sensitivity sexually and also with only one breast I figured I want some feminine bits left!! With cervical screening I felt I have that cancer covered! At the end of the day you have to do what you feel is right. Good luck in your decision
Was told I’m a BRCA1 back in January, some months after chemo etc.
Was told that BSO would be a good preventive step and saw gynae mid-Feb. He suggested I consider hysterectomy too since being on Tamoxifen gave me a 10% risk of womb cancer. I checked with my consultant and oncologist and they both said that hysterectomy was unnecessary because I was just about post menopausal and that after the BSO I would change from Tamoxifen to Arimidex and so the womb cancer risk would be no greater than anyone else’s. I had the BSO end Feb and was right as rain within 2 weeks and, touch wood, now have a risk of ovarian cancer which is lower than the general population, plus breast cancer risk also reduced. It was a no brainer …
No problems with Arimidex and I’d no problems with Tamoxifen either. The flushes I have are the same as I had during chemo, no better, no worse, and I haven’t gained an ounce, despite my best efforts!!!