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.

Profile picture for deccakid @deccakid

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

Jump to this post

@deccakid
I have known that I have a germline genetic mutation most likely passed on from my dad who died of prostate cancer some 40+ years ago. Mine is of the rarer ilk, a mismatch repair gene that gives me Lynch syndrome. I also have a somatic BRCA2 mutation ()not germline). So, this knowledge has been most helpful because it has led me to avail of a number of treatment protocols over the past `12 years that are specific to my mutation. The downside of course is that there is no cure or lasting remission. As I embark on year 12, my PSA is once again on the move and I am probably going to have to manage and treat my 7th recurrence of this relentless disease.

REPLY

One other note: Ambry is a good reputable lab. Also Caris and Foundation Medicine are excellent labs for reliable genetic testing. I have used them all. I also used Guardant 360 in recent years and had sort of mixed results with them,.

REPLY
Profile picture for yougnu @yougnu

@deccakid
I have known that I have a germline genetic mutation most likely passed on from my dad who died of prostate cancer some 40+ years ago. Mine is of the rarer ilk, a mismatch repair gene that gives me Lynch syndrome. I also have a somatic BRCA2 mutation ()not germline). So, this knowledge has been most helpful because it has led me to avail of a number of treatment protocols over the past `12 years that are specific to my mutation. The downside of course is that there is no cure or lasting remission. As I embark on year 12, my PSA is once again on the move and I am probably going to have to manage and treat my 7th recurrence of this relentless disease.

Jump to this post

@yougnu Jeez, Lynch Syndrome really sucks. It’s like every organ in your body is susceptible to some form of cancer.
A guy I knew had something like 5 abdominal surgeries over a 3 year period. His surgeon said that next time he would install a zipper, instead of sutures!!
Gotta laugh, I guess…
Phil

REPLY

I wonder after 4 or 5 years if I should have it updated for additional markers.

REPLY
Profile picture for yougnu @yougnu

@deccakid
I have known that I have a germline genetic mutation most likely passed on from my dad who died of prostate cancer some 40+ years ago. Mine is of the rarer ilk, a mismatch repair gene that gives me Lynch syndrome. I also have a somatic BRCA2 mutation ()not germline). So, this knowledge has been most helpful because it has led me to avail of a number of treatment protocols over the past `12 years that are specific to my mutation. The downside of course is that there is no cure or lasting remission. As I embark on year 12, my PSA is once again on the move and I am probably going to have to manage and treat my 7th recurrence of this relentless disease.

Jump to this post

@yougnu
Peter, who runs the reluctant brotherhood advanced prostate cancer twice monthly meetings. Has Lynch syndrome, and somatic BRCA2. He’s had prostate cancer for 12 years and has had almost every treatment available. Had Pluvicto almost a year ago and it immediately dropped his PSA to .04 after two sessions. It has slowly been creeping back up, So at some point, he will need another treatment.

You might want to attend one of the meetings, you have such similar diagnosis. You could commiserate and discuss different Treatment options.

REPLY

@deccakid ,

i had my germ line and somatic. Came back with ATM and BRCA2 (VUS) on the germline and LDLR on the somatic side. ATM is a repair gene that fixes broken cells and yes it is linked with prostate cancer and BRCA2 also, but this is a Variation of Unknown Significance (VUS), so not the primary one responsible for my cancer. BTW, i am 45yrs old.
On the somatic side the LDLR mutation is responsible for high cholesterol.
Family history, mother had breast and stomach cancer (beat both of the) and my dad had prostate cancer (also nicely cleaned up after 2 sessions of brachy).

For my son, i have to wait until he turns 18 to do genetic testing.

Stay strong and be positive.
Dinu

REPLY
Profile picture for bajjerfan @bajjerfan

I wonder after 4 or 5 years if I should have it updated for additional markers.

Jump to this post

@bajjerfan
With the rapid advances in genetics, I would think so...not just to find new markers, but that many may have a treatment??!!
Blessings

REPLY

I had the genetics test for all cancers after reading one of Jeff’s posting on BRCA2. My Mom and her Mom had breast cancer. It came out negative but if I had not brought it up it would not have been done which is a mistake, you need to know what you are up against.

REPLY
Profile picture for bajjerfan @bajjerfan

I wonder after 4 or 5 years if I should have it updated for additional markers.

Jump to this post

@bajjerfan

After emailing I had a call today from someone at Mayo. No need for updating as they still have your sample. The Tapestry project is closed.

Mayo has lots of research opportunities for those who wish to participate. You'll probably get your DNA testing for free.
https://www.mayo.edu/research/departments-divisions/department-clinical-genomics-research/overview

REPLY
Please sign in or register to post a reply.