Count me In Hi Lisa,
Sorry for delay in getting back to you but yes, I\'m in agreement and up for that!
Am totally jet-lagged at the mo (up at 3am this morning bright as a button - holiday feels like ages ago but the jet-lag lives on!) but will catch up on postings asap. I\'ve got logged onto the `other\' site but thats about as far as I\'ve got at the mo so bear with me - I\'m not very techy I\'m afraid - tried to attach a piccy and it all went to pot so bear with me!
Will post you back on my original posting here in reply..
... View more
Hi Lisa I was thinking of you yesterday and wondered how you were getting on, and I\'m sorry it wasn\'t a better result for you.
We\'ve chatted on my posting about preventative surgery and you know this is something I\'m looking at, so anytime you want to chat please get in touch. I have an appointment in Sept with the surgeon so should know more then.
I\'m in slightly different circs as I haven\'t had the genetics test as I don\'t qualify, and they couldn\'t find the BRCA fault in mum\'s DNA when tested, but the Genetics team have told me not to get too hung up about exact percentage risks as they do consider me to be at high risk in relation to women of
my age in the general population. With 4 cases of breast cancer in
relatives with an average age of 50 the risk could be up to 40% that I carry an as yet unidentified gene fault inherited from my mother.
With regards to the testing they could have missed a BRCA mutation on current testing or it could be they tested the wrong genes.
Alternatively, the cancers in my family could be due to multiple
factors. So impossible to be more exact about mine - which leaves it a whole lot of `what if\'s\'. I still feel this is something I need to do though, with or without knowing, as I can\'t take the risk that what happened to mum and others in the family will happen to me - especially knowing I could\'ve done something about it.
I\'m sure you\'ve gone round and round in circles, just take your time though, its a bit different to hear something in black and white, but it might make your decision making clearer in a weird way?
Take care of yourself,
... View more
Advice Needed Please Hello, I wonder if I could ask for some advice. I’m 32 yrs old, with a strong family history of breast cancer and have been thinking about preventative surgery for a while.
My mum passed away Oct 04 aged 56, and there are several of her aunties who died aged 40+ from breast cancer (her own mum died aged 31 unrelated and therefore we don’t know if carried gene). We were referred to the Genetics team in 2000 and mum’s DNA tested with no BRCA mutation identified. Mum’s DNA was re-tested last year and again no BRCA mutation identified. I know this is good news, but with the strong family history of breast (and other) cancer I still feel like a moving target, and having been there through mum’s determined battle I know I am not brave enough to face it again.
I know that I am in a lucky position to have a choice to be deliberating over, but its still a dilemma as to what to do. I’ve had a few lumps tested since age 25, all `benign fatty lumps’, and had my first mammogram in 2004 when a shadow was inconclusive on a trial 3D ultrasound scan. Because there is very little screening for my age group, and my next mammogram I believe will be age 35, I am considering surgery now. I have discussed this with the Genetics Counsellor and my Consultant (who was also mum’s Consultant) and he advised me to have children asap if that’s my intention, and then afterwards we will look at preventative surgery and reconstruction. My dilemma is, why wait? I’ve read conflicting reports about whether breast-feeding actually does significantly reduce risk, and as pregnancy causes mammary gland cells to divide and differentiate which increases risk at that time I wonder if I am in a better position now to consider surgery?
I am not eligible for BRCA testing myself and have thought about funding a private test as I know that if it proved positive I would definitely have the surgery, but if negative I still think I would be continually wondering whether I should have surgery anyway as there obviously is a family history Ã¢â‚¬“ and who’s to say if more genetic links/proteins will be identified in the future which predispose to breast cancer. I am thinking of going back to my consultant privately as I feel so selfish taking up his time talking about my dilemma over the decision, when I know how it felt sat with mum at appointments and a waiting room of patients that don’t have the luxury of choice. The Genetics Counsellor says she knows it’s a real dilemma, but suggested after childbirth may be better, as my risks are higher from 40+ because of the age of an affected relative.
I really don’t know what to do? It’s been a rollercoaster since mum died, a lot has happened, and a friend said I should wait as its all too soon. But I know I’ve been thinking about preventative surgery since I was in my late 20’s, so its not a knee-jerk reaction. I was very involved with mum’s illness and support from the start and made myself aware of what was out there and what questions to ask, so I know I’m the sort of person who goes straight to the issue rather than avoids it. I just find at the moment I have a bad week where it’s burning at the forefront of my mind, then I ease off, then before I know it its back there and I just don’t know if I can have it hanging over me.
Having looked on these really helpful forum pages I know that the surgery is not without complications, and I realise that I have a lot to find out about the surgery & reconstruction options before I make a final decision. I know I would have to opt for reconstruction at the same time for psychological reasons (mum had seven operations over six years to include a chest re-section, and in the last year developed a terrible fungating wound to the whole area which was awful to watch her suffer through). I haven’t been able to face self-examination since my first lump and mum becoming ill in the same year, and although my consultant examines me every six months its not a scan or enough reassurance.
If anyone has any advice about which way to go, or where to get info I would be really grateful to hear. Sorry for rambling on.... and just to finish by saying my heart truly goes out to everyone on this website.
... View more