I'm off for Genetic Counselling today

For those with a High Risk of Breast Cancer -BRCA1 and BRCA2 Genes, Family History, LCIS
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Janette
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Re: I'm off for Genetic Counselling today

Postby Janette » Sun Oct 07, 2012 1:34 pm

Wow, good luck with your results Victoria. It must be so worrying for you and your daughter. :hugs:
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Re: I'm off for Genetic Counselling today

Postby Victoria » Sun Oct 07, 2012 12:32 pm

I didn't think I had a strong family history but I did a bit of digging around (even sending away for death certificates) and found a bit more than I thought. Also because I had a male relative (uncle) who died from breast cancer it became a bit more relative. A male relative counts as two people apparently.

Now I'm waiting for results. My daughter has had a chat with her gynacologist and he became very serious. I was also diagnosed with primary peritoneal cancer just over 12 months ago (almost the same as ovarian cancer). My daughters gyn is now urging her to complete her family immediately and then 6 months later have her ovaries removed.
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Re: I'm off for Genetic Counselling today

Postby SueM44 » Sat Jan 28, 2012 3:27 pm

There is an article that someone posted in Science and Research that explains they are going to expand the testing for BRCA mutation, dont know how to bump but it explains in detail why and the research behind it.
Its called Expanding the criteria BRCA test in young triple negative BC.
Sue :)
dx Jan 2010 7mm IDC Grade 2. ER+ PR+ HER- had WLE and SNB in Jan followed by 30 rads. Hysterectomy May 2010. Genetic testing revealed BRCA 2 September 2010
Bilateral Mastectomy & Immediate Reconstruction Nov 2011

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Janette
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Re: I'm off for Genetic Counselling today

Postby Janette » Fri Jan 27, 2012 9:56 pm

I wish you all the best of luck with your appointments. :hugs:
Janette




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Re: I'm off for Genetic Counselling today

Postby elysian » Fri Jan 27, 2012 9:35 pm

Well I'm off to see the Counsellor on Tuesday (it was suppose to be on Wed just gone but got cancelled) - I apparently automatically qualify and like Kerry said, the factors taken into consideration regardless of family history is Age, Grade and if you are triple neg.
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Re: I'm off for Genetic Counselling today

Postby JudyB » Thu Jan 26, 2012 5:24 pm

I would have thought that age alone would be enough. I'm not sure the doctors really know as when I asked my oncologist why I wasn't being tested (when I knew nothing at all about it) I was told because only my mother had it and she was well into her 60's and I wasn't young enough to qualify on my own.

My oldest sister's doctor didn't seem at all interested in the fact that she had a sister with breast cancer diagnosed before 50 yet my other sister who is a couple of years older than me asked me the other day whether I had been tested as her doctor said she was at a greater risk of getting breast cancer because of me. I guess when you think that she has both a mother and a sister who have had it it makes it sound worse than just having a mother.
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Re: I'm off for Genetic Counselling today

Postby DancerMel28 » Thu Jan 26, 2012 12:31 pm

Hey Skettie, I know I didn't have much with mine (2 great aunts with BC but diagnosed late age so don't actually count), but basically they offered me genetic testing purely based on my age (28 at diagnosis) even though my kind of BC doesn't usually get associated with genetic types. So don't discount until they go through everything with you.

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Re: I'm off for Genetic Counselling today

Postby Skettie » Wed Jan 25, 2012 6:34 pm

On valentines day I have a hot date with a genetic councelor. I'm pretty sure however from the conversation I've had with the lady on the phone that I won't qualify. I don't have any info for my father or maternal grandfathers side of the family, and my mothers side seem like healthy little bother.
I hope they get me a box of chocolates!!

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Re: I'm off for Genetic Counselling today

Postby SueM44 » Wed Jan 25, 2012 2:39 pm

Hi girls
just got off the phone from dad who lives in QLD and the weather sounds awful. Good book weather if you aren't working. :wave:
The genetic counselor told me to be eligable for testing you needed to have two direct relatives on the same side of the family to be diagnosed with either BC, ovarian or prostate cancer. Age was a factor too ( under 50s) and if a relatives children had cancer too. Nothing was mentioned about the type of BC.
It's actually quite eye opening when you do the family tree in this way as I didnt realise how many relatives I had that have been affected.
My great grandfather had prostate cancer, grandmother ovarian cancer, her two sisters had BC, one dying at 35 and one of their daughters dying of BC before 40. My mother died from ovarian cancer :bawl:
I guess in previous generations you didnt really talk about what people were sick from or they just said " she had cancer" so I'm so glad now we are more open and discuss things.
i also went ahead with genetic testing because they said they would put me on a register ( I cant remember what they called it) so they had a record of my history and health for future generations and even though this isnt used for research who knows who this might help in the future.

Sue :)
dx Jan 2010 7mm IDC Grade 2. ER+ PR+ HER- had WLE and SNB in Jan followed by 30 rads. Hysterectomy May 2010. Genetic testing revealed BRCA 2 September 2010
Bilateral Mastectomy & Immediate Reconstruction Nov 2011

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Re: I'm off for Genetic Counselling today

Postby Jollyjac » Wed Jan 25, 2012 2:00 pm

Thanks Kerry,
Coffee sounds great.........totally over all this rain!
Dx feb 09, aged 40 triple pos, multifocal 2.1cm, 1.5 cm IDC 2+ nodes
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Re: I'm off for Genetic Counselling today

Postby kerryw1 » Wed Jan 25, 2012 8:20 am

Hi Jack,

They basically went through our family tree looking for breast cancer (both male and female) ovarian and i think prostate, age diagnosed/deceased and they I think they more or less tally up (possibly on a point system??).

On my father's side we had
One of his sisters died from ovarian cancer at 40
His father had two sisters who died from bc in their 70's
And then me.

I did learn yesterday some of the other factors are:
Triple Negative
Grade 3
Age

When I initially sent through my details prior to the meeting I hadn't been through our family tree yet and was unaware of my dad's dad's sisters. Until that point I wouldn't have qualified but once we found out about them it put me into the qualifying category.

Hope that helps.

Oh and by the way....I reckon once this rain let's up it's about time we had a coffee:)

Cheers
Kerry
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Re: I'm off for Genetic Counselling today

Postby Jollyjac » Tue Jan 24, 2012 6:53 pm

hey Kerry I was typing when you posted.
can you tell what criteria you had to meet to me tested, I always assumed I wouldn't meet the criteria for testing, but maybe I do??
JJ
Dx feb 09, aged 40 triple pos, multifocal 2.1cm, 1.5 cm IDC 2+ nodes
AC x4 Taxol x12 Herceptin Arimidex 1 yr - ceased due to osteoporosis
Zometa x 4, No hormone therapy

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Re: I'm off for Genetic Counselling today

Postby Jollyjac » Tue Jan 24, 2012 6:49 pm

I'll be interested how you got along today as well.
My Onc didn't recommend testing for me even though my father was adopted and have no family history available on his side - he said the chance of me testing pos would be remote based on my mothers famil history and being Her2. He said by the time my daughter was old enough to worry about BC testing will be much better and more mutations identified, my DH has a lot of cancer in his family and his brother died at 33 and Dad at 45 which my Onc thought was significant for my kids.
My GP has asked me a couple of times why I wasn't referred as I had no risk factors for BC, I guess she has planted a seed of doubt in my mind that I should look into it more as I have a daughter.
hope it went well today
JJ
Dx feb 09, aged 40 triple pos, multifocal 2.1cm, 1.5 cm IDC 2+ nodes
AC x4 Taxol x12 Herceptin Arimidex 1 yr - ceased due to osteoporosis
Zometa x 4, No hormone therapy

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Re: I'm off for Genetic Counselling today

Postby kerryw1 » Tue Jan 24, 2012 6:37 pm

Well it looks like I qualify for the testing and I think I will proceed. Thanks ladies for your support. Jayem, I did ask if I proceeded could any of the information collected by of use for any additional studies etc and unfortunately they said no. I, like you, are very greatful to those who have gone before us and partaken in trials etc.

She is going to give me some time to think about it and give me a call in a few weeks. Will let you know the outcome when I have it.

Thanks again everyone.

Cheers
Kerry
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Re: I'm off for Genetic Counselling today

Postby SueM44 » Tue Jan 24, 2012 1:34 pm

:hugs: let us know how you go.
I found the counselor ok but due to this forum and my research I knew just as much.
I had never experienced a counselor before but I wasnt asked about how I felt and it was more clinical. She may have been this way as I was firm in wanting to find out.
Finding out was important for me but everyone is different
My first visit they were just plotting my family tree then they took blood. I had to wait a while for the results and then they were repeated.
Sue :)
dx Jan 2010 7mm IDC Grade 2. ER+ PR+ HER- had WLE and SNB in Jan followed by 30 rads. Hysterectomy May 2010. Genetic testing revealed BRCA 2 September 2010
Bilateral Mastectomy & Immediate Reconstruction Nov 2011


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