Genomic testing: Who benefits from... - Advanced Prostate...

Advanced Prostate Cancer

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Genomic testing

runtrails profile image
8 Replies

Who benefits from genetic testing and when? Is it mainly when someone becomes castrate resistant and or metastatic that they recommend it? Or is there value in doing it ahead of things while one is castrate sensitive? Had RP and then salvage radiation with 6 months ADT. 1st lab after.. T of 25 and undectable PSA.

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runtrails profile image
runtrails
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Tall_Allen profile image
Tall_Allen

There are two kinds of genomic testing - germline and somatic. You can get a free germline test here:

prostatecancerpromise.org/

A germline test will tell you if you have an inherited risk factor.

A somatic test is a test of tumors - usually via biopsy but also in blood.

Other than PARP inhibitors and some very rare mutations that may make Keytruda useful, there aren't many genomic-based therapies. Sometimes, there are clinical trials.

PCaWarrior profile image
PCaWarrior

My MO runs a somatic test on me every quarter. I've been HSPC for 5 years and have no mutations.

But she sees value in continuing to test for mutations. I do not disagree.

treedown profile image
treedown

My MO had one done on my original biopsy material for germline and somatic before I started treatment.

RMontana profile image
RMontana

Runtrails, definitely some of us could have or could benefit from either Germline or Genomic testing...which you need and IF you need them, is the key item to grasp. From my experience you will have to drive this train if you want to arrive where you think you need to be...I tried to bring these testing regimes up when I was being treated and got the cold shoulder treatment in return. BUT I could have benefitted from them...

My father had PCa and my Grandfather as well...so it runs in my immediate family. I should have gotten Germline testing as well as Genomic testing (which I did). Take a look at this.

healthunlocked.com/active-s...

If you have not gotten Genomic testing then I think you are missing an important piece of information that you would need in order to determine how aggressive to be with your treatment. My genomic testing was Decipher and my results were near maximum levels for cancer cell aggressiveness, so I doubled down and was equally aggressive with my treatment, meaning I did not 'wait and see,' but shot first and asked questions later...you may want to consider some type of genomic testing regardless your germline status...here is a good article on this.

healthunlocked.com/active-s...

By the way if you look at my posts on a smart phone the LINKS may not work...but on a PC they do work...good luck. Rick

PS even if your past your RP surgery your tumor tissue is stored by your hospital for some years...the test run later is progressively less useful as years go by but you may not be too far removed from the surgery for this effect to show up...TNX

RMontana profile image
RMontana in reply toRMontana

By the way, forgot to send this..its the best mapping of Genomic testing that I have seen...I dont have links to each type of test but with the name you should be able to search and find info...the important thing is to do your own research, determine that you want it and THEN push, push, push for the test...find a URO that will give you a script for it...and check insurance for coverage, THEN if you must, pay for it. Cash prices are really different from what these Labs charge insurance...sometimes on a factor of 5 times less...Rick

healthunlocked.com/active-s...

Maxone73 profile image
Maxone73

For sure, when you become castration resistant. But now they tend to do it more often because as soon as you get the "right" mutation you might be suitable for immunotherapy for example. And the sooner they know that, the better.

Mgtd profile image
Mgtd

I took the test via the Promise study that Tall Allen mentioned. Painless, easy and very professional. You spit in a tube they send you, mail it back postage paid and they tell you how the process is going every step of the way. Very similar collection to the 23 and Me test. They offer genetic counseling if needed.

Many urologists do not want to get involved because of lack of knowledge and if they do the test they are obligated to do or refer you to a person who does genetic counseling. It is my understanding that outside big cities they can be hard to find.

Cyclingrealtor profile image
Cyclingrealtor

I was on a call yesterday with a research doctor at UC Davis in California. He see's benefit in both Genetic and Genomic testing.

Genetic testing for familial reasons and associated risks.

The use of genomic testing gives the docs a look at the DNA and the aggressiveness of your cancer. Genomics and treatment options are small right now but the field is growing and progressing. He said that prostate cancer can grow and mutate while under treatment all the while having low psa levels. There are times that knowing the genomic results will allow your care team the insight if a specific treatment may be beneficial or not.

With that, I see both the genetic and genomic testing as tools to navigate your cancer at deeper level.

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