Anyone do genetic testing?

Posted by deccakid @deccakid, May 29 8:13am

97 years old, stage IV metastatic castration resistant Prostate cancer. I just had my second Pluvicto infusion. I'll have to wait to see in PSA (1.0) goes down.
I was approached by a rep from Ambry Genetics to see if I was interested in genetic testing. After a fair amount of research, I started the wheels in motion. I found that genetic medical testing has come a long way recently. They can identify 77 markers (genes) that may have been deleted, mutated of epigenetically silenced. Some are cross-referenced to markers that cause other androgen-dependent cancers...e.g. Breast, ovarian, uterine, etc. As I have a daughter, I do it for her also, as many genes are passed down.
Has anyone else tried this?
I'll leave feedback when I get my results.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

deccakid | @deccakid | May 29 8:14am

Whoops, sorry ("Chemo brain"...I'm 67, NOT 97!!!...and suffering from brain fog!!!

brianjarvis | @brianjarvis | May 29 8:54am

I had genetic (germline) testing a few years ago. Found no gene variants related to prostate cancer. (They say that any type of solid tumor cancer may share one or more of these gene mutations.)

For anyone in the U.S. - If you can’t get the genetic test from your doctor or your insurance company won’t pay for it, you can get a free genetic test here: https://www.prostatecancerpromise.org/

deccakid | @deccakid | May 29 9:33am

In reply to @brianjarvis "I had genetic (germline) testing a few years ago. Found no gene variants related to prostate..." + (show)

@brianjarvis
Many thanks...I'm awaiting news from the local cancer center as to insurance paying for it...

Blessings

bajjerfan | @bajjerfan | May 29 9:36am

I believe it's free thru a study called Tapestry of which Mayo is a participant.

TurtBean | @turtbean | May 29 9:39am

Yep, I did, through the same folks. The cancer center told me it would probably cost me $100 and directed me to Ambry’s site to fill out the questionnaire there.

That came back and said, “Congratulations! Your adjusted cost is $100.”

Then I almost immediately got an email saying the cost would be $0, and that’s what it was.

deccakid | @deccakid | May 29 10:08am

In reply to @turtbean "Yep, I did, through the same folks. The cancer center told me it would probably cost..." + (show)

@turtbean
Thanks, I'll check into that! I'm curious as to how many genetic 'anomalies' they look for. I'm sure the Ambry looks at a total of 77.
Blessings

Jeff Marchi | @jeffmarc | May 29 11:02am

In reply to @deccakid "Whoops, sorry ("Chemo brain"...I'm 67, NOT 97!!!...and suffering from brain fog!!!" + (show)

@deccakid
Good to hear you’re getting tested. Some medical centers require everyone to get tested. They not only have drugs for BRCA2, but they also have drugs for PTEN (in trial but available).

The first thing I did when I found I was BRCA2 was to have all my cousins my brother and sister, and my two children get tested. One cousin who’s Mother had breast cancer Was cleared so her daughters don’t need to be tested. Another daughter of my cousin was cleared as well, her grandmother and her aunt died of breast cancer. Both my brother and sister were cleared and as a result their children Didn’t need testing.

Turns out I was the only one left in the family with BRCA2. My mother was the only one of the three sisters that didn’t have any problems with BRCA2, Just passed it on to me.

deccakid | @deccakid | May 29 11:40am

In reply to @jeffmarc "@deccakid Good to hear you’re getting tested. Some medical centers require everyone to get tested. They..." + (show)

@jeffmarc
Howdy Jeff,
Thanks for the reply...I bet there's some sighs of relief there!

Yeah, I had to push this. Apparently here they don't even regularly do genetic testing. With the almost explosion of Genetic science I think it's a valuable tool....My local cancer center barely heard of genetic testing...I'm sure they think I'm crazy! (Yep, when it comes to cancer!!)
LOL
I'm still waiting to hear back as far as approval and scheduling, and I found out there is a genetic counselor in our capitol city...a much larger facility...

I'll keep y'all posted

ecurb | @ecurb | May 30 7:37am

In reply to @deccakid "@jeffmarc Howdy Jeff, Thanks for the reply...I bet there's some sighs of relief there! Yeah, I..." + (show)

@deccakid my genetic test was. Negative. Two years later I m in remission after RT/ADT treatments.

deccakid | @deccakid | May 30 8:28am

In reply to @ecurb "@deccakid my genetic test was. Negative. Two years later I m in remission after RT/ADT treatments." + (show)

@ecurb
Great news all around! Congrats!!
I'm pursuing the genetic testing because ...I'm curious and LOVE to research...but also because I had 2 FM Cousins die of Breast Cancer, my Father died of Cancer, my Mother beat bladder Cancer and my daughter's grandfather died of Cancer...So I do this for her as well.
Blessings to all.