BRCA testing

KInd of like the message about keeping up the stoic appearance:
I saw the medical oncologist today, thought it would be a routine
appointment as all the tests were in, and she strongly advised holding
on radiation and due to my heritage and age, getting the BRCA testing.
When the counselor talked to me, we discussed how my family has no
real history of cancer, but my husband's family is loaded with breast
and prostate cancer: his mother (at 49), paternal grandmother (?age),
paternal aunt at 70, prostate cancer in his brother at 54 and maternal
uncle at 70.
So, I got the test, and am waiting two weeks for the results--which
pushes back radiation a bit, which is fine.
There's a strong possibility that my husband will get tested,
especially if I'm negative, so we can advise our daughters.
I was quoted odds of a 12% chance the test will be positive, but if
it is, than a very high chance of recurrence or contralateral cancer.
So, rather than a pleasant check up, there's a whole new realm of
uncertainty.
Mary said it was a journey.

Judy

"judy.n" <judy.nudelman@gmail.com> wrote in message
news:30d9763e-c285-45e2-8636-b6c05de3c7ee@27g2000hsf.googlegroups.com...
> KInd of like the message about keeping up the stoic appearance:
> I saw the medical oncologist today, thought it would be a routine
> appointment as all the tests were in, and she strongly advised holding
> on radiation and due to my heritage and age, getting the BRCA testing.
> When the counselor talked to me, we discussed how my family has no
> real history of cancer, but my husband's family is loaded with breast
> and prostate cancer: his mother (at 49), paternal grandmother (?age),
> paternal aunt at 70, prostate cancer in his brother at 54 and maternal
> uncle at 70.
> So, I got the test, and am waiting two weeks for the results--which
> pushes back radiation a bit, which is fine.
> There's a strong possibility that my husband will get tested,
> especially if I'm negative, so we can advise our daughters.
> I was quoted odds of a 12% chance the test will be positive, but if
> it is, than a very high chance of recurrence or contralateral cancer.
> So, rather than a pleasant check up, there's a whole new realm of
> uncertainty.
> Mary said it was a journey.
>
> Judy
Judy.. It is indeed a journey with lots of twists and turns. From your
post it would seem that you're not likely a BRCA carrier and that your
husband very likely is. I was tested following my mastectomy and found to
be positive. Cancer is almost the exclusive cause of death in my maternal
line. This includes an uncle with breast cancer. I didn't get the test for
any reason other than to insure my kids had the best info they could have.
So there I was, a father of three adult women, grandfather of 10 and a
carrier of the gene. Not a nice legacy to leave.

Given my initial cancer, my screening against recurrence will be as
aggressive as reasonable so knowing about enhanced risk will have little
effect on my ongoing treatment. I had the test essentially for the kids.
If I carried the gene, then it was a 50% chance they had it as well and if
so that would drive them to a more aggressive screening program.

Happily we beat the odds and none of the three came back positive. Some
times the bread does fall jelly side up. Lots of happy faces that day, you
can imagine. Testing also raised questions as to what to do with the
results. As you may know, breast and ovarian cancer risk are both
implicated in BRCA gene. There is some implications that prostate cancer
risk is enhanced as well. Bummer on that one, since I managed to catch
that diagnosis as well.

I am interested in why the doc held on radiation until the test. I hadn't
heard any suggestion from my onc that my BRCA status could effect my
treatment plan. Of course my case is not your case and different
considerations may well apply.

Best of luck to you, it is a long journey but good outcomes are all around
us.

Chas

On Jun 5, 11:35*pm, "Chas" <drucelakex...@yahoo.com> wrote:
> "judy.n" <judy.nudel...@gmail.com> wrote in message
>
> news:30d9763e-c285-45e2-8636-b6c05de3c7ee@27g2000hsf.googlegroups.com...
>
> > KInd of like the message about keeping up the stoic appearance:
> > *I saw the medical oncologist today, thought it would be a routine
> > appointment as all the tests were in, and she strongly advised holding
> > on radiation and due to my heritage and age, getting the BRCA testing.
> > *When the counselor talked to me, we discussed how my family has no
> > real history of cancer, but my husband's family is loaded with breast
> > and prostate cancer: his mother (at 49), paternal grandmother (?age),
> > paternal aunt at 70, prostate cancer in his brother at 54 and maternal
> > uncle at 70.
> > *So, I got the test, and am waiting two weeks for the results--which
> > pushes back radiation a bit, which is fine.
> > *There's a strong possibility that my husband will get tested,
> > especially if I'm negative, so we can advise our daughters.
> > *I was quoted odds of a 12% chance the test will be positive, but if
> > it is, than a very high chance of recurrence or contralateral cancer.
> > *So, rather than a pleasant check up, there's a whole new realm of
> > uncertainty.
> > *Mary said it was a journey.
>
> > Judy
>
> Judy.. *It is indeed a journey with lots of twists and turns. *From your
> post it would seem that you're not likely a BRCA carrier and that your
> husband very likely *is. *I was tested following my mastectomy and found to
> be positive. Cancer is almost the exclusive cause of death in my maternal
> line. *This includes an uncle with breast cancer. *I didn't get the test for
> any reason other than to insure my kids had the best info they could have.
> So there I was, a father of three adult women, *grandfather of 10 and a
> carrier of the gene. Not a nice legacy to leave.
>
> Given my initial cancer, *my screening against recurrence will be as
> aggressive as reasonable so knowing about enhanced risk will have little
> effect on my ongoing treatment. *I had the test essentially for the kids..
> If I carried the gene, then it was a 50% chance they had it as well and if
> so that would drive them to a more aggressive screening program.
>
> Happily we beat the odds and none of the three came back positive. *Some
> times the bread does fall jelly side up. *Lots of happy faces that day, you
> can imagine. *Testing also raised questions as to what to do with the
> results. *As you may know, breast and ovarian cancer *risk are both
> implicated in BRCA gene. *There is some implications that prostate cancer
> risk is enhanced as well. *Bummer on that one, *since I managed to catch
> that diagnosis as well.
>
> I am interested in why the doc held on radiation until the test. *I hadn't
> heard any suggestion from my onc that my BRCA status could effect my
> treatment plan. Of course my case is not your case and different
> considerations may well apply.
>
> Best of luck to you, *it is a long journey but good outcomes are all around
> us.
>
> Chas
Chas,
Thanks for your information--my husband just told me that his
maternal grandfather had prostate cancer--making the case for him as a
carrier more probable--he's agreed to testing to give information to
daughters.
The reason she held radiation, is that if I come back positive, I
may opt for prophylactic mastectomies and she didn't want me to have
unnecessary radiation--I spoke to the radiation oncologist--who had me
scheduled to start on Monday, which is barely three weeks post op, and
now the soonest I'll start will be in two more weeks, closer to 5-6
weeks post op, which actually is fine with me, I'd prefer to heal
before the radiation.
My husband is committed to the testing, because the ramifications
for my daughters are huge.
I can only hope, since he has both maternal and paternal risks, that
he'll be negative--but if not, that my daughters won't be affected.
So, another wrinkle.
I kind of wish someone else had figured out that as an Ashkenazi Jew
who developed breast cancer at 49, I met criteria for screening,
because now it's just one more test to worry about, but that is the
point of meeting with the medical oncologist--ironically, because the
breast health center staff routinely bungle appointments--I moved it
up myself from June 16--I would have already started radiation by
then.
It does add a whole different dimension--the concern that you've
passed along a risk to your children--and it brings up a visceral
concern for them.
My husband will get the testing whether insurance covers it or not,
we just have to figure out who orders it.
I'm so glad your daughters dodged the genetic bullet.
Judy

"judy.n" <judy.nudelman@gmail.com> wrote in message
news:d9ae9299-4535-44d2-8564-9bbb3580cbac@a1g2000hsb.googlegroups.com...
On Jun 5, 11:35 pm, "Chas" <drucelakex...@yahoo.com> wrote:
> "judy.n" <judy.nudel...@gmail.com> wrote in message
>
> news:30d9763e-c285-45e2-8636-b6c05de3c7ee@27g2000hsf.googlegroups.com...
>
> > KInd of like the message about keeping up the stoic appearance:
> > I saw the medical oncologist today, thought it would be a routine
> > appointment as all the tests were in, and she strongly advised holding
> > on radiation and due to my heritage and age, getting the BRCA testing.
> > When the counselor talked to me, we discussed how my family has no
> > real history of cancer, but my husband's family is loaded with breast
> > and prostate cancer: his mother (at 49), paternal grandmother (?age),
> > paternal aunt at 70, prostate cancer in his brother at 54 and maternal
> > uncle at 70.
> > So, I got the test, and am waiting two weeks for the results--which
> > pushes back radiation a bit, which is fine.
> > There's a strong possibility that my husband will get tested,
> > especially if I'm negative, so we can advise our daughters.
> > I was quoted odds of a 12% chance the test will be positive, but if
> > it is, than a very high chance of recurrence or contralateral cancer.
> > So, rather than a pleasant check up, there's a whole new realm of
> > uncertainty.
> > Mary said it was a journey.
>
> > Judy
>
> Judy.. It is indeed a journey with lots of twists and turns. From your
> post it would seem that you're not likely a BRCA carrier and that your
> husband very likely is. I was tested following my mastectomy and found to
> be positive. Cancer is almost the exclusive cause of death in my maternal
> line. This includes an uncle with breast cancer. I didn't get the test for
> any reason other than to insure my kids had the best info they could have.
> So there I was, a father of three adult women, grandfather of 10 and a
> carrier of the gene. Not a nice legacy to leave.
>
> Given my initial cancer, my screening against recurrence will be as
> aggressive as reasonable so knowing about enhanced risk will have little
> effect on my ongoing treatment. I had the test essentially for the kids.
> If I carried the gene, then it was a 50% chance they had it as well and if
> so that would drive them to a more aggressive screening program.
>
> Happily we beat the odds and none of the three came back positive. Some
> times the bread does fall jelly side up. Lots of happy faces that day, you
> can imagine. Testing also raised questions as to what to do with the
> results. As you may know, breast and ovarian cancer risk are both
> implicated in BRCA gene. There is some implications that prostate cancer
> risk is enhanced as well. Bummer on that one, since I managed to catch
> that diagnosis as well.
>
> I am interested in why the doc held on radiation until the test. I hadn't
> heard any suggestion from my onc that my BRCA status could effect my
> treatment plan. Of course my case is not your case and different
> considerations may well apply.
>
> Best of luck to you, it is a long journey but good outcomes are all around
> us.
>
> Chas
Chas,
Thanks for your information--my husband just told me that his
maternal grandfather had prostate cancer--making the case for him as a
carrier more probable--he's agreed to testing to give information to
daughters.
The reason she held radiation, is that if I come back positive, I
may opt for prophylactic mastectomies and she didn't want me to have
unnecessary radiation--I spoke to the radiation oncologist--who had me
scheduled to start on Monday, which is barely three weeks post op, and
now the soonest I'll start will be in two more weeks, closer to 5-6
weeks post op, which actually is fine with me, I'd prefer to heal
before the radiation.
My husband is committed to the testing, because the ramifications
for my daughters are huge.
I can only hope, since he has both maternal and paternal risks, that
he'll be negative--but if not, that my daughters won't be affected.
So, another wrinkle.
I kind of wish someone else had figured out that as an Ashkenazi Jew
who developed breast cancer at 49, I met criteria for screening,
because now it's just one more test to worry about, but that is the
point of meeting with the medical oncologist--ironically, because the
breast health center staff routinely bungle appointments--I moved it
up myself from June 16--I would have already started radiation by
then.
It does add a whole different dimension--the concern that you've
passed along a risk to your children--and it brings up a visceral
concern for them.
My husband will get the testing whether insurance covers it or not,
we just have to figure out who orders it.
I'm so glad your daughters dodged the genetic bullet.
Judy



The first question my onc asked after my surgery was if was an Ashkenazi
Jew. It changes the odds, but the odds remain on your side if I remember
correctly. I am WASP so didn't pursue the details too far.

I understand fully the radiology wait. A 70 yr old cousin just had her
ovaries removed as a prophylactic move following her BRCA2 positive test.
My daughters all had differing but valid views as to how they would deal
with a positive result. It is a highly personal decision. I found my
genetic counselors to be very helpful and my onc as well. Unhappily they
deal with statistics and not the very real emotions that I, you and all
others must deal with.

Please let the group know how it all turns out.

Chas