Advice
Advice My mum who is 85 is the middle sister of five girls. She has lost 2 sisters to breast cancer, one some 30 years ago and the other app 10 years ago. One sister has died of natural causes and the other has just had surgery for breast cancer. My mum to date (fingers crossed) is free from illness.
The eldest daugher of the aunt who died 30 years ago had breast cancer approx 10 years ago, the daughter of the sister who has recently been diagnosed has had breast cancer twice in the last five years and I have had treatment for it over this last year.
One of my maternal cousins has contacted the Genetics Department of her local hosptial in Cardiff who I believe have taken some samples of blood from her and the cousin who has had breast cancer twice.
Should I wait for them to contact me or should I contact the Genetic Department of my hosital in Somerset as I am becoming concerned for my daughter who is 27.
Jenjen
Hi Jenjen Hi Jenjen,
I think when you look at your family tree it can be quite startling, and of course it develops over time. I remember being referred to my local genetic department 12 years ago and them doing a family history and then coming back to me to say that my risk was something like 12%. At that point I felt well thats not much different to the national average, until I got a phone call from the genetics department last year! Since then I’ve had my ovaries removed and bilateral mastectomys with reconstructions… and discovered I had BRCA2!
I would contact your local genetics department and have a chat with them, if only to put your mind at ease and get in the system. Maybe you could ask your GP to refer you? or ring them up directly. I think they would be able to contact the Cardiff centre and if you have a blood test done match it up to your cousins. At least them you will know where you stand and can go forward from there.
Its really difficult and the not knowing but suspecting is really hard. Good luck, I understand how you feel about your daughter… mine is nearly 12 and I look at her and keep hoping that so much will have developed over the next 10 - 15 years, although of course I don’t even know if she carries the gene at the moment… I really hope not.
Let us know how you get on, good luck,
Lynne x
Just wondered Dear Lynne
I have read your response to Jenjen about you having prophylactic mastectomies and Oophraectomy. Could I just ask if you don’t mind, if you went straight into the menopause after removing your ovaries and if so, what it was like.
I have had breast cancer in 1999 and then had prophylactic mastectomy in 2001 and they want me to have my ovaries removed as I too have the BRCA2 gene. I have so far refused as I am worried about the menopause. Also, do you have a large family history?
Lorraine.
Oopherectomy I had an oopherectomy in 2001 when I was 36 and apart from some hot flushes, i had absolutely no problems what so ever.
I think the thing that helped me was that I didn’t read any info about it or the possible side effects, because I know then I would have developed the symptoms because I knew i could (if you know what i mean?? Ignorance WAS bliss!!)
Knowing what I know now, 5 years post oopherectomy, I would still have it done, as it has stopped in its tracks the possibility of ovarian cancer!
Julie
Hi Lorraine Hi Lorraine,
So sorry I never noticed your post until today!! I’m 12 months now post oopherectomy and like Julie I had a couple of hot flushes after about a month post op, and since then nothing. I was 41 when I had it done. I do worry about the state of my bones, and now that I’ve had my mastectomys I need to go back to my GP and ask him about a bone density scan to see how things are. Other than that I’ve been fine and the relief reguarding ovarian cancer is immense.
Yes I did have quite a family history, 3 cousins who died before 40 with ovarian cancer and then my Mum who passed away with breast and her sister who is ok also had bilateral breast cancer. Also had another cousin who had an oopherectomy and then still went on to develop breast cancer… which kind of hit home to me that an oopherectomy alone for her didn’t reduce her risk of breast cancer!!
I’m glad I had the oopherectomy done (by the way I was advised by my specialist, and I know that not every specialist advises this, NOT to go on HRT), although I was 41 and had been sterilised, so that was’nt such a hard decision to make. I have a cousin with BRCA2 who is 30 and to have an oopherectomy at a younger age I can understand that takes some thinking about.
Good luck with whatever you decide, sorry for not replying sooner.
Take care,
Lynne x
Dear Lynne
Thanks for replying. It does not sound too bad - that is what worries me about it, hot flushes and weight gain etc.
I too have a large family history, my mum, 4 cousins, an uncle, aunt and myself.
I was advised by my consultant to have oopherectomy but at the moment I have opted to do the 5 year study UKFOCSS - its an ovarian screening programme - internal screen once a year, give blood that type of thing. I do worry that this is just a temporary measure and even more so, as your cousin had the op and has since gone on to get breast cancer.
Perhaps I need to re-think and decide. Take care and thanks for your response.
Lorraine x