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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?

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john6stodolka | @john6stodolka | Jul 6 7:40pm

Thanks, zzotte. If you can, please give your results here. Very interesting.

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john6stodolka | @john6stodolka | Jul 6 7:48pm
In reply to @brian5837 "The Prostate Cancer Foundation had a webinar on this subject on June 30. "How Genetic &..." + (show)
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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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It's a real dilemma, isn't it. At this point in time, we're on the cusp of all of this new medical information - it can be very confusing, yet interesting and downright scary. If you can wait long enough, something else will happen to change what you decide to do now.

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john6stodolka | @john6stodolka | Jul 6 7:55pm
In reply to @john6stodolka "It's a real dilemma, isn't it. At this point in time, we're on the cusp of..." + (show)
Profile picture for john6stodolka @john6stodolka

It's a real dilemma, isn't it. At this point in time, we're on the cusp of all of this new medical information - it can be very confusing, yet interesting and downright scary. If you can wait long enough, something else will happen to change what you decide to do now.

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The PCF webinar is perfect. Thanks for the link.

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hirejohn | @hirejohn | Jul 7 9:43am

John,
After being diagnosed with prostate cancer, my doctor and I discussed both genomic and germline testing. So I started with the Decipher genomic test having no idea what results I would get. With low risk / slow growing clinic markers (PSA, MRI and Biopsy), I was more than a little surprised with a .78 high risk Decipher score. After talking with my wife and both daughters, I went ahead with two separate germline tests with both being negative for any mutations despite having a strong family history of prostate cancer.
Did the testing affect my course of action? For me it did, as I just couldn't get comfortable with active surveillance given the high Decipher score. So I went ahead with a RARP at a center of excellence in April; and thereafter, my post-surgical pathology was upgraded from low risk to intermediate risk. So no regrets on my end.
I would suggest that you discuss the pros and cons with your family and that, provided you get their blessing, strongly consider both genomic and germline testing.
Best of luck on your cancer journey.

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ededed | @ededed | Jul 7 4:10pm

I had my blood tested (for free) by Color's Clinical Team to see if I was eligible for a drug trial by:
© 2021, Color Genomics, Inc.
831 Mitten Road, Suite 100, Burlingame, CA 94010
support@color.com

My results told me that I had a mutation that is associated with colorectal cancer. I also have another risk factor for colorectal cancer.
With this news I am more strict about eliminating foods from my diet such as meats with curing agents found in bacon, pastrami, ham, etc. so that I might avoid coming down with a second cancer.

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john6stodolka | @john6stodolka | Jul 7 6:53pm

Thanks, John.
I'll put your comments on the plus side. I'm learning a lot from these posts.

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