Hi Judi and Fiona,
Fiona - I am also BRCA 2 positive I don't know of many
others on the list
who are.
Judi - My grandparents were Dutch/German heritage and I
guess were part of
those Icelandic Vikings that came down to conquer Europe!!
I had my testing
done through MDAnderson and it is my understanding that BRCA
positive people
cannot be discriminated against. RE: Insurance
I would tell your daughter to absolutely be tested. In my
opinion the
Ovarian Cancer risk of this is the most scary because it is
hard to detect. Do
it through a major cancer center where she can have
counseling before to help
her make the decision and verify that insurance cannot
raise rates, etc.
The best information I have found, other than through MD
Anderson is through
the group Facing Our Risk Empowered which is a group who
supports those of
us with genetic mutations or simply a high risk of breast
cancer. (some
people will have lots of BC in the family yet no one is
positive).
I plan to have my 6 year old daughter tested outside of MD
Anderson as they
feel that minors should not be tested. I have thought long
and hard and
talked to many people who are BRCA positive and feel I have
made the right
decision. I am her mother and I am BRCA 2 positive, no one
else is in my shoes.
So often the only people who "really know" are the
ones who are positive
themselves.
This is another reason I recommend talking to those at
Facing Our Risk
because they aren't just some genetic counselor trained to
tell you what they
think you should do but people who have lived it and are
living it now.
At 26 she is of the age where she can start to be screened.
MRI of the
Breast and transvaginal ultrasounds have shown some promise
in detecting Breast
and Ovarian Cancer in young women. ALWAYS REMBER that
Breast Cancer caught
at Stage 1 is 99% curable. The same goes for Ovarian
Cancer. This is the
beauty of screening and KNOWING your risk. If we were
talking about
something like Multiple Sclerosis which cannot be screened
for and cured at an
early stage, maybe I would feel differently, maybe then a
person would be
looking over their shoulder all the time. With Breast
cancer, it is good to keep
watch as you can do yourself some good.
Remember BRCA is not a death sentence. In fact, some
studies show that BRCA
patients do better overall once they are in treatment.
To read about the testing itself go to _www.myriad.com_
(http://www.myriad.com)
as Myriad Labs is the only lab in the U.S. approved for
testing.
The web site is _www.facingourrisk.org_ (http://www.facingourrisk
.org)
I really have a lot of respect for this group. I plan to
get more involved
with them.
Jenee Bobbora, Houston
Dx March 2003 with Inflammatory Breast Cancer at age 32
years, Stage 3b two
large tumor in left breast. Er +, Her2-, treatment at MD
Anderson was 4 FAC,
4 Taxotere, all 3 weeks apart with Nuelasta, double MRM, 2x
a day radiation,
now on Tamoxifin. I am BRCA 2 positive am married and have
a wonderful
daughter who is now 6, the light of my life. I have not had
reconstruction but am
considering it. NED. Now 3 full years from my last day
of treatment.
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