Genetic tests: Barbara's story

Uploaded by NHSChoices on 26.11.2010

My sister Hazel, she had cancer.
That was breast cancer to start with but a brain tumour killed her in the end.
And then the next sister was Betty and she had ovarian cancer.
Many, many years ago she had a cancer in her leg which was removed successfully,
but then she got breast cancer, then she had the ovarian cancer.
My sister Sandra, who was the youngest,
she had colon cancer, that just travelled all through her
and it all snowballed from there.
My maternal grandmother, she had cancer of the tongue and the throat.
Everything all came together.
One of my elder sisters got in touch with the Royal Marsden
and everything took off from that.
They said there must have been a genetic pop in there somewhere,
and it turned out that there was.
I decided to have the genetic test after I'd had the cancer,
when I was having a check-up.
Not an awful lot to say, really,
my sister contacted the Royal Marsden because she saw them advertising.
They invited us to Poole Hospital as a family,
the ones that wanted to go,
to discuss it and follow it up from there.
They did explain that if we did have it done and we were carriers,
they would advise us where to go and how much further to go on with it.
And that's about it, no interference, no nothing.
Nothing was forced on us, we were just offered advice
and if we wanted it we were offered counselling.
It was mainly just like a blood test. That's basically all it was.
The very last test we had
is where they take a little skin graft, a tiny scrape of skin,
probably about an inch square, which is completely painless.
That's really all the tests we had.
The main thing is the blood test.
We were all tested, all the ones that wanted to be,
and the ones that were positive,
they said it was a BRS1 gene,
which is to do with breast cancer
but I think it does spread to other organs.
My elder sister, she's never been tested because she doesn't want to know.
My elder brother, he's a bit younger than me but he's the oldest of the boys,
he hasn't had it done because he doesn't want to know.
But all the other members of the family have had it done
and I think anybody that's been found to have the gene,
they have had check-ups.
We had regular check-ups for several years
but now every now and again you get a questionnaire to fill in
and if there's anything untoward they contact you and you get another test.
So out of the 12 of us, five of us have had the cancer,
which is quite a lot out of 12 people.
You can't tell people what to do or what not to do
and it just gives a cause for concern, really,
to think that they've not been tested.
If they're carrying, why don't they have the test?
There's so much there to help you.
I think it does give you a lot of peace of mind
to know that the doctors are aware of what's going on
and they will get you sorted out as soon as possible.
If they don't know about a genetic link, what are they going to do?
Just put you on a waiting list.
I think it's really good that you don't have to wait.
We're very lucky in that respect.
Not lucky that we've got it, but lucky that we do get sorted out very quickly.