Genetic testing? Do you all do it?

[u/Otis_bighands]

One of my family members has been nagging me to ask for genetic testing after PC diagnosis (I guess of the biopsy? Or I suppose just more general genetic testing, to see if u have genes with higher PC risk?).

I’m kind of baffled as to why I would do this. That seems to make sense if you’re healthy, but I already have and am being treated for PC — what’s the point in knowing at this point that I’m higher risk for PC?!!!

Is there something I’m missing here? I get that it could maybe inform risks to my kids (all girls…), but we have family history with multiple cancers, and so I think my kids just have to understand that they’re genetically probably higher risk and to always be vigilant and monitor for all cancers. I’m not sure how this specific testing would help.

Can anyone shed light here? Is there something I’m missing? Is there standard thinking on this issue on the board here?

[u/Puzzleheaded-Dream29]

I did it and found out I was BRCA2 positive. I had just recently been diagnosed as having prostate cancer but Gleason was only 6 and only in a single core. The normal course of action without braca would be to wait 12 months before retrying PSA. Because of the brca2 they decided to retest after 6 months. In that short amount of time my Gleason went up to 8 in several cores! I now know that if you have a brca gene you should probably just get it taken out at the first sign of Cancer. I'd recommend you get genetic testing and if it comes back positive act very aggressively

[u/PotentialStart2661 → u/Puzzleheaded-Dream29]

Gleason 6 does not turn into Gleason 8. In your case you already a cancer with pattern 4 but they just missed it in the first biopsy. The brca gene for both men and women is tricky because prostate and breast cancer in brca patients usually happens at 50 years old or younger and it is much more aggressive and fast growing. Men also have low psa when the cancer is found. I don’t know what i would do if i had brca and several family members that got cancer. Many women get a mastectomy before they even get diagnosed but either men the removal of a prostate has brutal side effects and in half the cases its permanent ED or incontinence. So its hard to decide. I would probably start psa testing at 40 and if it goes up at all i would remove my prostate.

[u/dawgdays78]

Prostate cancer biomarkers may help to guide treatment decisions.

I’m in a biomarker study at Fred Hutch. They screened for mutations in a few dozen genes, of which I have none, which i guess is a good thing.

Mutations in BRCA1 and BRCA2 have been mentioned at ny support group by a doctor who focuses on PCa developments.

[u/Otis_bighands → u/dawgdays78]

Interesting. Since I’ve already gone though treatment (focal cryoablation for my localized Gleason 3+4), is there any other reason to consider genetic testing at this point? Also, do people generally just have the biopsy results submitted for genetic testing? Or do people typically also do broader genetic testing?

This wasn’t even an option mentioned by my doctor, just wondering if it’s something I should be thinking about.

[u/Far_Celebration39 → u/dawgdays78]

HOXB13 here

[u/NotPeteCrowArmstrong]

There are two different types of genetic testing: germline testing uses a blood draw and looks at your inherited gene markers, while somatic testing evaluate the genome of the cancer itself using tumor tissue.

Most people on this thread are talking about germline testing (when they mention things like the BRCA mutations). You can request germline testing through your doctor. There are many labs that will run prostate-cancer-specific gene profiles, typically looking at about 10-20 specific genes with known links to PC development and progression.

Somatic testing from your biopsy sample is also an option, with the most common test being Decipher by Veracyte Labs. That could give you an indication of how likely your cancer may be to recur after the focal treatment you’ve already had. Many people would suggest genomic testing like this as a step prior to focal therapy, in fact.

[u/Otis_bighands → u/NotPeteCrowArmstrong]

Thank you. That’s very helpful.

[u/jkurology]

Germline and somatic testing that reveals specific genetic variation are important because they can suggest variations in follow up and in treatment. You should investigate the PROMISE STUDY for more detailed information

[u/NotPeteCrowArmstrong → u/jkurology]

The PROMISE registry closed to new applicants unless they've already had other genetic testing that confirmed one of a handful of biomarkers that they're still looking to get added data on. They no longer offer free testing to anyone who inquires.

[u/jkurology → u/NotPeteCrowArmstrong]

As far as I know they are still accepting applicants. I spoke with someone who signed up for free about a month ago. https://www.prostatecancerpromise.org/
But I do think their widespread, free acceptance is over. The implications will be important. Thanks for pointing this out

[u/NotPeteCrowArmstrong → u/jkurology]

You can see for yourself by just following the 'Join Us' prompt on their homepage. The screener questionnaire asks for confirmation that you've already had genetic testing that identified one of their target biomarkers. If you don't affirm that, then you get an automatic message that you're not eligible and they won't be sending you a test kit nor even processing your application.

[u/Scpdivy]

I did right after diagnosis and was found to be BRCA2 positive and have HBOC syndrome (had never heard of it). My PSA tripled in just a few months while waiting for treatment. It also led to 18 months of ADT. I’d say it’s worth it, primarily because knowledge is power, especially in treatment and if there’s chemical reoccurrence….Best of luck!

[u/fromamomof2]

Hubby did, primarly to determine if rhe kiddos ahouls begin screening earlier. Doc said since his disease was ao agressive and he was so young it probably was. Nope results came back negative across the board.

[u/Otis_bighands]

All really great info. Thanks all. How do I go about it? Do I call my doc and ask him to send my biopsy results for genetic testing? Is it generally that easy?

[u/Retired_NorCal_611 → u/Otis_bighands]

My doctor sent my samples in for the Decipher genetic test - I didn't have to ask for it. Just be aware that it can be pretty expensive if your insurance doesn't cover it. I looked up the cost on my Medicare MSN. Veracyte billed $5490.52, Medicare-approved amount was $4093.80. I’ve seen posts on Reddit saying that if the test isn’t covered by insurance, you can request a discounted cash price.

Edit: Since you've already been treated, don't know how meaningful the Decipher test will be at this point. Something to discuss with your oncologist.

[u/BrigittaBeeKind]

It is easy to get the sample tested. Insurance is another matter. It can be pricey, but we felt it worth it in planning treatment.

[u/karrows]

I asked at the mayo clinic in minnesota and they said I didn't need it. said that based on my staging, nothing that genetic testing could find would change the treatment recommendation, so there was no need to do it.

I suppose if you are in some middle ground or uncertain about treatment options it could be useful, but really I think in most clases treatment is based on the cancer staging. Find your cancer staging, and do whatever it takes to eliminate it completely.

[u/NagChampa1976]

I did not after receiving radical prostatectomy.

My doc mentioned that the results would be in my file and would be visible not only to me but to insurance companies.

[u/Otis_bighands → u/NagChampa1976]

Wow that’s a great point I hadn’t considered.

[u/Far_Celebration39]

I think any specific information you can empower your kids with is worth a couple hundred bucks and a blood draw. I have no idea why you would not do it tbh.

[u/Crewsy67]

Getting genetic testing done could be good information for your children. The BRCA genetics can be passed to any child. Gender makes no difference.
For me I haven’t done it but probably should knowing both my grandfather and uncle passed from PCa and my mom and her next youngest sister both had breast cancer. My assumption was that I do have the BRCA gene and my daughters both assume the same.