What to expect from the testing process?

Hi, I am due to have a genetic testing counselling session in a couple of weeks time and was wondering :-

  1. What questions are they likely to ask me so I can be prepared. Is it best to try and work out a family tree to see if there is any history ( bit difficult with my family cos they dont really talk about things) and

  2. When I get to the testing process what does that actually entail?

Would appreciate any info you can give me. Thanks xx

Hi there F1Fan

I am sure you will receive lots of information and support from other users, but in the meantime, I thought you might be interested in one of our publications. I have given the link below, it’s got lots of information about family history and genetic testing.

breastcancercare.org.uk/upload/pdf/BC_in_families_LP_-_March_08.pdf

It can be either downloaded or ordered throught the site.

Hope you find it useful.

Very best wishes.

Louise
Facilitator

Hi FiFan,

I had my first appointment with the genetic counsellor at the beginning of Feb and will see her again next week (they won’t test until you’ve seen them twice in this area!).

I had to fill in a basic family history questionnaire in advance and then at the session we went over this and she asked about all the members of that bit of my family over 3 generations (regardless of whether or not they’ve had cancer). I had prepared for it by drawing up a family tree and that turned out to be very helpful. So I’d say, yes, do try to work it out if you can but don’t worry about what you don’t know. I think they expect some blanks and I had a good few due to part of the family emigrating and losing touch. Not quite sure what we’ll talk about this time as I feel we’ve covered everything …

Eliza xx

Hi, I have an ever increasing family history and have just had breast cancer myself. Went to family history/genetics consultant. Filled forms in first.Had seen same person 7 yrs ago when my sister had just been diagnosed Wasnt quite expecting anything much more than a chat. Was told very nicely that she would recommend a preventative bilateral mastectomy even without BrCa1 or 2 tests back as there are other genetic links, maybe not a whole gene but when bits of different genes get together they can show up in families like mine. Wasnt too shocked whilst there as had already thought it a possibility but I really wasnt expecting her to be the one to tell me. Thought it would be the surgeon. Got home and had the wobbles. Be prepared for anything!

Hi, i too am just having treatment for bc, diagnosed in jan this year, i am due to go for a gene test on the 1st of june, not sure what to expect. I have a large family history of bc, having lost my mum at 49, and her sister at 52, there is also a younger sister diagnosed at 36, she has just had her 10 all clear. I have also lost a greatgrandma, and 3 great aunts to bc. My consultant has said that if the test is poss, he will recomend i have my remaining breast removed, although if its neg, he said i can still have it done due to the large family history. None of them were tested for any faulty gene. MY Sister is also in the starting process of appointments.
I am 40 and she is 38, so still quite young, and feel we need to know either way, then we can get on and plan the rest of our lives.I had a mastectomy anc, and an expander implant, which has yet to be changed for a permanent one, this will be after i finish the chemo. So i have at least another 2 ops to have this year.
I hope if anyone, who is in a similar situation to me, could offer me abit of info of their experiences.
many thanks sharon x

Dear F1FAN
I went last week and they were very nice, they quite understood that I did not know all my family history, but apparently I had enough for then agree to do the testing. A blood test. The results will take about 4 months to come and they will contact me again then. They talked about my family history and the implications if my tests come back positive.
all the best to you
Maria

I had blood test in march 10, my mother, and a cousin both died of breast cancer, i was diagnosed may 08, and my sister this year, i am now awaiting results i am concerned what the results will show, what implications will this have for my daughter and grandaughter, any information please

Hi JanetE,

I’m sure you’ll receive lots of information and support from other users, but in the meantime, I thought I would repost the link to our publications, Breast Cancer in Families, which has lots of information about family history and genetic testing. Here is the link:

breastcancercare.org.uk/uplo … rch_08.pdf

It can be either downloaded or ordered throught the site.

I hope this is helpful
Best wishes

Kate, BCC Facilitator

Hi, back again after my results came through last week, about 11 weeks after the blood test. Am pleased not to be BrCa positive! However am still faced with the fact that its genetic (polygenic) and what to do next. Am pretty certain I will have risk reducing mastectomies as have just read about recurrences in another forum and how a grade 1 IDC can a few years later become another primary but grade 3 instead. Still have lots of questions to ask my surgeon and genetics consultant but not sure they have the answers. It can obviously return with a vengence, but I’m supposing if theres very little breast tissue left, theres less of a chance of that happening. Bit confused, anyone?