Hello ladies.
I am going up to Guys on Friday and have to fill in and post before I go a questionnaire. On the form at the bottom it says name and address of person requesting advice do they mean me? I have already put all my details down. Also it says Mother’s side/ Fathers side circle as appropriate....what does that mean, I am both their sides! This is testing for BRCA gene has anyone else done this at Guys? What happens at the appointment? Thank you
Hi Seems confusing. I'd definitely say it's you who are requesting the advice. Are you going for counselling? As for Mother's/Father's side they may mean where is the family history of cancer. With me it was all down my mothers side (cousins, aunts). Having said that my father was separated from his family during the war so we wouldn't have known anyway! I hope your meeting goes ok. Basically they just talked me through the implications of the test for myself and my family (brothers, children, nieces, nephews). I was quite clear in wanting to know , of course that arms your relatives but places a burden on one's shoulders even if there was nothing you can do about what you have unwittingly passed on. Kathy xx
Hi Kathy it’s my siblings who might be affected if I do test positive. My triplets won’t be affected as they are from donated eggs. Thanks for replying, hope you are keeping well. Anne x
My daughter had this one at Guys. The initial appointment with a geneticist, who explained everything to her, and took a blood test. That came back BRACA neg, but positive for BRIP1. She then had appointments with a whole lot of specialists, all on one afternoon. She was advised to have her ovaries and womb removed (she is nearly 50 and she wasn't planning to use them). They did it about a fortnight later.
She found them all very helpful and pleasant. My genes came from my mother's side.
Hi Rachael I was diagnosed three years ago stage 1c2, had hysterectomy and six cycles of chemo and thankfully have been all clear since. My last check up in July I saw the oncologist who suggested getting me tested because of the new parp inhibitors? I do have children but they are not biologically mine. x
Hello... I had mine at Addenbrookes and I do remember the form being a bit confusing but I think I did a separate family tree of both sides as far as I knew it (which wasn’t much). They did ask about my mothers treatment and wondered if they could get her records ( she died in 1993). When I tested BRCA I positive I was told that this might not be linked to my grandmother’s oc and that I might have developed it spontaneously!
I think there is plenty we don’t know about genetics and epigenetics even now xx
Hi, I'd say it was you requesting. As for mother/fathers side I didn't know which side the BRCA had come from. It was assumed my father's side as there were no relevant cancers on my mother's side. Being adopted and only recently discovered my birth family I didn't have much information to go on.
At my meeting which was at Southend-on-Sea, they asked about as many family members I could think of to be able to decide which ones might also need testing for the BRCA gene. It turned out my children, neices and sisters were all clear so that was lucky.
Good luck at the meeting. It's nothing to be nervous about. Mine lasted about an hour.
Best wishes, Zena x
It will be about which side the hereditary cancer if from. I’m BRCA1 from father and high risk from my mother. X
Hi both my parents have died, so how would they know? x
If they have both died of cancer, do they have any family? Siblings that can also get tested? I guess if they can’t trace is with another family members that it will be unknown which side of the family yours come through. But looking at your family history as far back as great greats my give you the answer. With my my dads mum had BC, her daughter had it, my great nana had OC. X
I had this done at Guys, I had OC and my sister died of pancreatic cancer and apparently there is a link, thankfully my result was negative. But, please don’t be scared of the appointment they were very patient, and explained everything.
Here’s hoping you get the same result as me as it is one less thing to worry about.
Lots of luck
Bev
Hi Bev not worried just wondering what it all involves. I have filled in a family history sheet didn’t know everything ie birth dates etc. Is it a one to one. Do they do the blood test or are you sent off to another department? Worried about how long it takes as my train is at 18.10pm and the appointment is at 4pm. Thank you for replying. x
Back from Guys, saw a lovely lady called Sarah. She already had part of my family tree as we had been there 25 years ago after the sudden death of our son. That was upsetting talking about Matthew. Just the 8 week wait now. x
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