Anyone referred to ICR from Manchester St Mary's ??

Hi,

Mum and I had genetic testing done at the Preston clinic of St Marys in May last year (no results yet…) but yesterday I got a blood testing pack from ICR for their genetic familial bc research. Rang them and it’s because M’cr have passed mum’s and my details to them for their studies. Think it’s because there are 5 cases in 2 generations - my mum and her twin sister, their older sister, their paternal cousin and me. My sister appears to be the only female to have so far ‘escaped’ the disease and fingers crossed she will.

Has anyone else had this referral? It’s pure curiosity as I’m more than happy to be tested. Originally, the M’cr people didn’t seem bothered (no more female children in family) and said it looks like it is a faulty gene but it’s probably one they haven’t found yet.

Thanks,

Liz

hi liz

i would have thought with a family history like that you may have been able to be tested through the local labs rather than what i presume is the brca 3 research trial called the genetics of familial breast cancer study (FBCS) which is being under taken by the ICR and has been running for many years and are trying to identify other genes which may contribute to the cause of BC.

its maybe worthwhile going to see your genetics counsellor to discuss your concerns.

lulu xx

Hi Liz & Lulu,

I have just (on my return today from a weekend away) had the results of my genetic testing and they have found no pathogenic mutation. However, the letter from my regional genetics service suggests that I might like to take part in this research study. So in my case there hasn’t been a direct referral and they will want me to sign a consent form before going any further.

Eliza xx

Thanks for that Lulu.

Although the woman at ICR never mentioned that research project, it would sound like a distinct possibility as there is a consent form for me to sign and send back when the blood sample is returned.

I’m off on hols for a week to Amsterdam and Paris and assuming there’s still nothing when I get back, I’ll ring M’cr again and ask them about it as they were the ‘originating’ source. They haven’t actually allocated a genetic counsellor so it’s a matter of ringing the dept.Depending on what they say (I’ll probably have to leave a message and wait for them to get back to me), I may then ring ICR as I’ll be sending my blood sample then after my next hospital visit - rubbish veins !! It’s all been very hit and miss to say the least !!

Liz x