Genome / DNA cancer testing - does anyone have advice?

Posted by john6stodolka @john6stodolka, Jul 2 8:37pm

I'm thinking of having genome tests done by blood and saliva to find out more information about my advanced prostate cancer. This information could help me manage my cancer better and even prolong my life. The tests can also find over 100 different cancers and those results are the main issue. Primarily, it may be impossible for my blood relatives to get life insurance, and they may find out that they are very likely to get a certain type of cancer. This is a tough one for me. I would very much like to try anything that would help me treat my cancer but I would never put my family in a situation that they wouldn't like. What do you think?

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

There are many different biomarker (genomic) tests, depending on what you’re testing for:
> tissue tests: Decipher, Prolaris, OncotypeDx, ConfirmMDx, ProMark
> liquid (blood) tests: 4KScore; EpiSwitch PSE; Phi Prostate Health Index; FoundationOne®Liquid CDx.
> liquid (urine) tests: SelectMDx; PCa3 (PC Antigen 3); MyProstateScore (MPS), ExoDx.

Those biomarker (genomic) tests are not the same as genetic (germline) tests to determine which gene mutations you (and your siblings) may have inherited from your parents.

Go for it.

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I just had genomic and genetic testing done, Tests showed I had 2 cell mutations that were known to cause prostate cancer and lymphoma., both of which I have. It remains unclear how this will improve treatment. it didn’t. (Original treatment remained the same), It also remains unclear how this can help a family member since the di has already been cast. Anyway, at least I know what probably caused them.

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@lsk1000

I just had genomic and genetic testing done, Tests showed I had 2 cell mutations that were known to cause prostate cancer and lymphoma., both of which I have. It remains unclear how this will improve treatment. it didn’t. (Original treatment remained the same), It also remains unclear how this can help a family member since the di has already been cast. Anyway, at least I know what probably caused them.

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With known genetic (germline) mutations related to prostate cancer (see the most common ones in the attached graphic), should the most common treatments fail, there are PARP Inhibitor therapies (lynparza, rubraca, talzenna, zejula, or akeega) that may target those specific genetic (germline) mutations.

Though it may not seem like it, there is a method to what seems like madness.

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All good information. Thanks. My oncologist told me he has some patients that tell him to "throw the book at them" and give them any treatment available. I'm not there yet but I am willing to try new things - cautiously. This one is 50-50 thus far.

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@brianjarvis

With known genetic (germline) mutations related to prostate cancer (see the most common ones in the attached graphic), should the most common treatments fail, there are PARP Inhibitor therapies (lynparza, rubraca, talzenna, zejula, or akeega) that may target those specific genetic (germline) mutations.

Though it may not seem like it, there is a method to what seems like madness.

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The Prostate Cancer Foundation had a webinar on this subject on June 30. "How Genetic & Biomarker Testing Can Help Guide Your Care". Here's the link they sent of the recording.
https://www.pcf.org/how-genetic-and-biomarker-testing-can-help/?utm_source=newsletter&utm_medium=email&utm_campaign=june-30-2025-webinar-follow-up
Unfortunately the webinar specifically didn't address Decipher-like tests, which they said will be discussed in a subsequent webinar (no date given). FWIW, my R/O at a COE just told me that with a high decipher like mine (78) they recommend genetic testing. I haven't had it done yet and am on the fence. I may be like some other men who just don't want to know and/or don't want to create a genetic red flag for disability insurance and life insurance for my son, two categories of insurance for which the law apparently allows evaluation and consideration of genetic testing results. But I also want to know how big a risk it is for my son, though my R/O told me that because I have it my son is at higher risk and should establish a baseline PSA at age 40 and then start annual testing at ages 45/50.

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I’m waiting for the results of my testing, I went with Invitae by Labcorp at the recommendation of my oncologist

Zzotte

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@brian5837

The Prostate Cancer Foundation had a webinar on this subject on June 30. "How Genetic & Biomarker Testing Can Help Guide Your Care". Here's the link they sent of the recording.
https://www.pcf.org/how-genetic-and-biomarker-testing-can-help/?utm_source=newsletter&utm_medium=email&utm_campaign=june-30-2025-webinar-follow-up
Unfortunately the webinar specifically didn't address Decipher-like tests, which they said will be discussed in a subsequent webinar (no date given). FWIW, my R/O at a COE just told me that with a high decipher like mine (78) they recommend genetic testing. I haven't had it done yet and am on the fence. I may be like some other men who just don't want to know and/or don't want to create a genetic red flag for disability insurance and life insurance for my son, two categories of insurance for which the law apparently allows evaluation and consideration of genetic testing results. But I also want to know how big a risk it is for my son, though my R/O told me that because I have it my son is at higher risk and should establish a baseline PSA at age 40 and then start annual testing at ages 45/50.

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There’s a difference between genetic (germline) testing and biomarker (genomic) testing.
> Biomarker (genomic) testing looks for genes, proteins, and tumor markers that tell
more about the prostate cancer (for instance, what may have been acquired - mutated variants - caused by cell mutations or environmental factors).

> Genetics (germline) testing looks for genes (i.e., “germlines”) that have been inherited from parents. (e.g., BRCA1/2,
ATM, CHEK2, HOXB13, MSH2, etc.).

Which do those insurance companies look at - genetic, biomarker, or both?

There are other legitimate resources out there (like PCRI) that have information on all of these topics. PCF is just one of many available resources.

I never had a Decipher test; I had both the Prolaris test and the OncotypeDx test; both told me what I needed to know.

For me, I wanted to know any possible genetic component (and deal with whatever might happen later later). This organization gives free genetic (germline) testing: https://www.prostatecancerpromise.org/

I had none of the gene mutations they tested for (even though I was diagnosed with prostate cancer in 2012; my oldest brother had none of the gene mutations a different company tested for (even though he was diagnosed with prostate cancer earlier this year). My older brother probably had prostate cancer (suspected due to an elevated PSA); but he never pursued additional testing since he was dying of pancreatic cancer at the time.

They estimate that only about 15% of prostate cancers have a genetic component, so the odds are that you don’t. But if you do, that increases by 50% the chance of a 1st-degree relative having prostate cancers. (Also remember that prostate cancer and breast cancer share some of the same gene mutations. So, either parent can pass that gene mutation to sons or daughters.)

The recommendations for baseline PSA testing have remained relatively unchanged for over 30 years. (I started annual PSA testing at 45y.) Here’s an article from 1992 discussing this topic.

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@brianjarvis

There’s a difference between genetic (germline) testing and biomarker (genomic) testing.
> Biomarker (genomic) testing looks for genes, proteins, and tumor markers that tell
more about the prostate cancer (for instance, what may have been acquired - mutated variants - caused by cell mutations or environmental factors).

> Genetics (germline) testing looks for genes (i.e., “germlines”) that have been inherited from parents. (e.g., BRCA1/2,
ATM, CHEK2, HOXB13, MSH2, etc.).

Which do those insurance companies look at - genetic, biomarker, or both?

There are other legitimate resources out there (like PCRI) that have information on all of these topics. PCF is just one of many available resources.

I never had a Decipher test; I had both the Prolaris test and the OncotypeDx test; both told me what I needed to know.

For me, I wanted to know any possible genetic component (and deal with whatever might happen later later). This organization gives free genetic (germline) testing: https://www.prostatecancerpromise.org/

I had none of the gene mutations they tested for (even though I was diagnosed with prostate cancer in 2012; my oldest brother had none of the gene mutations a different company tested for (even though he was diagnosed with prostate cancer earlier this year). My older brother probably had prostate cancer (suspected due to an elevated PSA); but he never pursued additional testing since he was dying of pancreatic cancer at the time.

They estimate that only about 15% of prostate cancers have a genetic component, so the odds are that you don’t. But if you do, that increases by 50% the chance of a 1st-degree relative having prostate cancers. (Also remember that prostate cancer and breast cancer share some of the same gene mutations. So, either parent can pass that gene mutation to sons or daughters.)

The recommendations for baseline PSA testing have remained relatively unchanged for over 30 years. (I started annual PSA testing at 45y.) Here’s an article from 1992 discussing this topic.

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Thanks. So much to unpack in your response and I won't attempt to do it all.

First, so sorry about your brother.

Second, about insurance, in the PCF webinar they made the point that genetic testing (which is what they were covering) cannot be used as a factor with respect to health insurance but it can be for life and disability insurance, which don't enjoy the same consumer protections. My guess is that insurance will look at anything they can get their hands on to evaluate whether to grant or rate a policy. I know that my group life insurance provider says that if I want to increase my coverage above 500k I would have to submit blood work. Who knows if they don't do genetic testing of their own on that?

Finally, a lot has changed from 1992, and one thing is certain. PSA testing recommendations certainly have not remained the same. More like a yoyo than a flat line.

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@john6stodolka

All good information. Thanks. My oncologist told me he has some patients that tell him to "throw the book at them" and give them any treatment available. I'm not there yet but I am willing to try new things - cautiously. This one is 50-50 thus far.

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John6, Don’t fret about family members down the line. Pretty soon insurance companies will probably require genomic and germline tests before they’ll even insure you! AI will make it quick and easy for them to reject any application that seems risky…unless, of course, you are willing to pay quadruple for the policy.

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Thanks to all who have responded. Excellent information that is helping me decide what to do.
I've heard mention that AI will have (or maybe already does have) some sort of access to everyone's complete health records anyway. Who knows where we're going ...

I'm Gleason 9, high-risk, advanced, aggressive, Grade 5 prostate cancer. Lots for AI to work with!

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