Does anyone have an experience to share about getting genetic testing done on your biopsy samples? I'm interested in three tests: (1) a DECIPHER test, (2) a full gene sequencing of tumor DNA and RNA (e.g., at Claris Labs), and (3) the Artera AI analysis of digitized pathology slides. Also, if anyone has experience with using CureMatch, I would appreciate it. Thanks ! Bob
Genetic Testing?: Does anyone have an... - Prostate Cancer N...
Genetic Testing?
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janebob99
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I am 68, one 4+3, one 3+3. PSA was 7.8, Had second opinion on biopsy and had Decipher. Decipher was .84 which indicated an aggressive cancer more likely to metastasize. PSMA PET showed confined to prostate. Had Barrigel spacer placed. Completed 5 SBRT 10 days ago. Had focal boost to lesion and "urethral steering" to eliminate radiation "hotspots" from urethra (read minimize urethral radio-toxicity). The Decipher score indicated I may benefit from "treatment intensification and multimodal therapy." Hence I am on Orgovyx for ADT for 6 months. Any questions you may have, fire away.
Stay Strong Brother!
Hi, ToolBeltZia. Where are you located? I'm in Albuquerque, NM. I'm 69, so we are about the same age. Thank you for your detailed postings. I'm thinking I'll be doing SBRT soon. I think Barrigel is better than SpaceOAR, from what I've read. You mentioned "Perinural Invasion". What is that, and how did they detect it?
Hi Janebob99. I am in Las Cruces. The Barrigel is better as it has essentially unlimited working time whereas SpaceOAR polymerizes quite quickly as it is being placed. Perineural invasion is ascertained from the biopsy and means the tumor is approximating and/or invading nerves within the prostate. That is an indication it is trying to find its way out. My PSMA PET indicated it was all contained within the prostate.
Where are you being treated?
Hey, fellow New Mexican! My wife thought you were from here, based on your username. My name is Bob Watson, and I'm being seen at the UNM cancer center (Dr. Shah). But, I'm having a second option appointment next week at the NM cancer center (Dr. Kaplan). I wonder how they can determine PNI from a biopsy, unless they collected some nerve cells along the way. My tumor (1.3 x 0.9 x 0.7 cm) has already penetrated outside of the prostate walls I'm a T3a stage (PIRADS 5). Not happy about that...
Where did you get your SBRT treatment? Who are your doctors?
Spent four relaxing days in Las Cruces almost by accident back in 1999, really enjoyed it. Probably grown like hell since then!
I suspect it has.....they are building new homes like crazy! We spend winters here, and May-September in Wisconsin. Our mantra for arrival and departure in WI (with a nod to Karate Kid) is .....Leaf On.....Leaf Off......
Where abouts in Wisconsin do you stay? I did my Ph.D in Madison. Great town. Loved everything about southern Wisconsin.
I did my undergrad in Madison, it is a great town. We have a place on a lake outside of Land O Lakes.....way up north. Just a little difference between there and here, and we love both places.
Sounds sensible!
For what purpose are you interested in those tests?
He answered without a direct reply just below your response. I'm curious as to your response to his comment about ADT success rates. Thanks
Hmmm. I don't see Tall Allen's response, which I'm very intested in. Where would I go to find it?
Thanks. I only see replies because I usually only look at what lands in my inbox.
You're welcome
You know, that's a good question. Perhaps I'm jumping the gun.
I've read that you think the Decipher test is only useful for men on AS. I'm in a different category, T3a (High Risk). I'm hoping a Decipher test comes back intermediate risk, not high. My % Free PSA is 26%, which is a good number.
I've very interested in the Artera.ai test because they say 2/3 of men don't benefit from ADT. But, that's not a genetic test.
I guess I'm wondering now when is the right time to get genetic testing.
I don't know if I have metastatic PCa, because I haven't done a PSMA PET scan yet. That's the next step. Then, if I do have metastasis, genetic testing may be helpful to select individualized drugs (i.e., precision oncology, like PARP inhibitors for BRCA 1/2 mutations).
Do you know how long after getting a biopsy that you can do genetic sequencing on tumor DNA/RNA ? Is it weeks, months, years?
If it doesn't matter, then there is no hurry.
Thanks!
Bob
Decipher is validated for use with AS. There are a couple of major clinical trials that have recently begun to test whether it can be used in unfavorable risk patients to help decide as to whether intensification of hormone therapy is warranted. You don't yet have biopsy results confirming PCa, so all of this is premature. I hope you'll write back after you get results.
Thank you, Allen. I should get them in about 10 days. I'll let you know.
You know, that's a good question. Perhaps I'm jumping the gun.
I've read that you think the Decipher test is only useful for men on AS. I'm in a different category, T3a (High Risk). I'm hoping a Decipher test comes back intermediate risk, not high. My % Free PSA is 26%, which is a good number.
I've very interested in the Artera.ai test because they say 2/3 of men don't benefit from ADT. But, that's not a genetic test.
I guess I'm wondering now when is the right time to get genetic testing.
I don't know if I have metastatic PCa, because I haven't done a PSMA PET scan yet. That's the next step. Then, if I do have metastasis, genetic testing may be helpful to select individualized drugs (i.e., precision oncology, like PARP inhibitors for BRCA 1/2 mutations).
Do you know how long after getting a biopsy that you can do genetic sequencing on tumor DNA/RNA ? Is it weeks, months, years?
If it doesn't matter, then there is no hurry.
Thanks!
Bob
I had a Decipher test done right after the biopsy results were in (in fact before the final consult with my uro). FYI I think they call the testing done on biopsy samples “genomic” testing, as compared to “genetic” testing done on your DNA to look for mutations like BRCA 1/2.
My test was none of the ones you mentioned, I think it was Tempest. They charged my insurance a boat load and they paid a good chunk but that still left me $5000. My MO said it would be much so I was a bit po'd when it came back so high. Well turns out after looking closer yhey had something about treatment cost toxicity and by signing something saying the could use the results I think they reduced it to $100. Nothing was actionable at the time and not sure the results are of any benefit anymore.Hope that helps answer your question. It's just one experience and as with most things, the better your insurance the less you need to worry about when choosing . I would necessarily recommend the one I used.
I had Decipher. Came back low risk, but Dr. Kishan at UCLA said it was too new to be that useful. One reason they discount the price so much is to build the database. That takes years to see actual patient trajectories and map to genomic data. So while my result was encouraging and might help me sleep at night, it had no bearing on my treatment plan.
Take your PSA, Gleason Score and stage and plug it into the PCa nonogram and pick your treatment. Ain’t no magic out there (yet). Though PSMA PET and MRI guided SBRT are getting close. We’ll have to wait a bit on genomic treatments.
Thanks! That's very helpful information. Where do I find a PCa nomogram?
Here’s the MSKCC calculator:
And the national SOC guidebook:
As requested, what is the purpose and expectation you have for the testing. It would appear you seek to have every test under the sun done... But that doesn't mean that the tests may have any benefit. I notice today PSMA flalling into this gap... Get it just because it's there, but if you read the studies the benefit only comes with suspected metastatic disease, not in a newly diagnosed environment. Anyways...
I requested my RP pathology tissue be sampled and my MO agreed due to "family" history with cancer. It was all good that tissue, which surprised me. But not long after (2 years) when mets were discovered and surgically removed, I requested again that tissue pathology be tested and it showed 11 markers! Scary right...!? Both tests were performed as part of a study, just FYI.
Understand that the "Genomic" or individual testing, does not factor in much for the patient these days (yet) for a couple of reasons. First being, they've yet to track what type of treatment works best towards particular markers a patient may have, outside of the drugs made specifically for any of the markers. And second, there are only a few drugs approved for just a few of those markers "associated" with PCa. A very narrow window for those who may require an untraveled path in their journey! And even with all that said, it isn't understood that those drugs are approved in a particular setting as well, meaning you must have been through and failed multiple therapy lines in order to qualify! And lastly, although yes, there have been some miraculous results here and there, for most patients the drugs only provide a short period of efficacy before the PCa adjusts and moves on... So like most modalities, "TIMING" is very important. My mindset early on was if there's a marker identified, wouldn't taking that drug asap benefit me best? Now that I've been down the road quite a ways, I'm not so sure that's would've been the case. Disclaimer is, I am taking Lynparza, for BRCA Gene deletion identified in the 2nd test. And only got it after radiation, ADT and Chemo failed... So there's that...
So I agree, what "purpose" is the testing for? Do you understand what it is, what it does, and what it can do? Understand the difference between all the markers, the drugs available, and what, when, and why they might be used? They're not there "just because" ie, let's give it a shot, like some therapies... Lol
Good Luck and Best Regards
Excellent points. And, thank you for your detailed reply. I may be jumping the gun, as I have not had a PSMA-PET scan yet. Seems like the genetic/genomic tests are most helpful for metastatic disease. But, I don't know if I have that yet. I do think in 5 years it will be more helpful, as more is learned about it. I'm sorry that your RT, ADT and chemo failed. Hope the Lynparza works.
The PSMA is useful on new diagnosis, isn't it? As the most accurate scan to determine if the cancer has spread beyond the local area, so one doesn't have unnecessary surgery? At least I've understood that's a legitimate use.
But I agree people on forums seem to recognize it across the board in many situations where it wouldn't change treatment.
I'm a newbie, but from what I've read a PSMA-PET scan is the new gold standard in imaging distant metastasis (lymph nodes, bone). There are other linker molecules that are used than PSMA, such as Fluciclovine-F18, which bind to amino acids in the Prostate cell. Don't know which one is better, though. I would think that identifying mets early on would changes one's treatment choices.
Well, if considering it's efficacy alone, it is "better" if we can call it that. But in all things, you must consider the details. Efficacy in newly diagnosed is not so high largely because the contrast agent collects so much in the bladder and kidneys, it obscures avidity where needed most. And for the matter, the test itself in a diagnostic setting is used to "dismiss" distant spread, rather than validate it... Weird way to think about it, but that's the truth, lol. For newly diagnosed patients, localized testing is sufficient as I mentioned, only when suspected distant spread is present would the super sensitive scanning be worthwhile.
As in all things, all my opinion and as such, be taken by that weight. Can a patient request it? Sure! Will insurance ball at paying for a newly diagnosed patient which falls outside its approval? Maybe too... So then of course the patient is left to decide that benefit vs costs basis. For the record, when I was first going to have a PSMA scan back in 2018, pre-approval days, my discussion centered on benefit of the test being more important than cost and was willing to cover the cost out of pocket, off-script if need be. Would have been about $2000 then as I argued the CT portion of scan and read was the same as a regular CT and only the contrast agent (G68) was different. Had all parties agree prior to scan. But as luck would have it, was approved and entered into a study and got it that way, cost free 
My entire point is to try and enlighten those who may not be, as to the benefit or lack thereof with the test. Too many believe it to be a Unicorn, when it's not. Like all testing, it has its place when properly used. Otherwise too many have unrealistic expectations of what it actually does. The rage on the newer [18F]DCFPyL contrast with everyone paying attention to the "Better" commentary, rather than actually read the study results which would allow understand if what "Better" meant. And it was "Better" at seeing so to say. The most "Better" by using this agent was that producing it was more volume per cycle and the agent half life was pretty much 2x that of G68. But in the study MORE [18F]DCFPyL was used and it's dwell time prior to scan was longer than the comparison to G68, the Gold Standard (still). So what's the point of a PSMA scan that won't show anything for a newly diagnosed patient, just cause?
I remember when I was a kid, I got my tonsils out too, just cause! Hahahaha
It's all good!
Have a great day 
Very interesting thoughts. I appreciate your perspective. I agree that many organs light up because they also express PSMA (saliva glands, tear glands, liver, bladder, perhaps others), which makes interpretation challenging. A negative result would be fantastic (I'm T3a with EPE, PIRADS 5). I can afford the out-of-pocket expense, if it comes to that. Hopefully, insurance will cover it since I'm High Risk.
• in reply toCooolone
think i would gravitate towards treatment first. Scans aren’t always all that easy to read and can have ambiguous findings. A 10 PSA is not all that high. I’ve had several and still don’t know exactly what is going on.
janebob99• in reply to
Thanks, Anomalous. I appreciate the feedback.
I had the Prolaris test through Myriad Genetics and a test through Color. Prolaris was covered by insurance and Color was free because I had a prostate cancer diagnosis. Color is a germline test to see if you have any genetic mutations.Prolaris will give you a risk score for disease progression.
I originally asked my doctor about Decipher but he said he preferred Prolaris.
Thanks. I see a lot of people using Decipher. But, haven't heard much about Polaris. I'll look into that one. I'm waiting to get the results from Color (Promise registry).
genetic test gives you a probability, a % , that only helps you for a treatment decision. It depends than on the importance you wanna give to the result
Decipher is useful to determine whether you want to add ADT to your regimen. Though most already do add it, there is interesting discussion whether it is useful. I like reading this Doctor’s substack. He looks at Decipher-it’s widely thought to be accurate and there are studies finding it accurate.
Edit: looking back at some of your responses I see your classification is high risk so ADT will undoubtedly be recommended and I presume you will have radiation to the prostate and pelvic area as a whole, with good prospects. I added another substack piece by the same doctor that might be more applicable to you.
protons101.substack.com/p/f...
protons101.substack.com/p/h...
tall allen also has some excellent research findings in his blog.
prostatecancer.news/search?...
janebob99• in reply to
Thank You so much. Yes, I'm expecting to ask for SBRT possibly in combination with HDR brachytherapy (but not sure it would be needed). I subscribed to Protons 101. Thanks for the links...I will read them.
I had a gleason 6, grade 1 and they said I had an option to do AS. But my Father died of prostate cancer and I also had PNI. So I had a Decipher test done. It came back .76 high risk. That, along with the other factors helped me make up my mind to have my cancer treated and not do active surveillance.
While there may be genetic markers favorable to cancer, some current research is pointing to cancer, most all cancers, being a metabolic disease. Of course there's no profit in fighting a disease with diet, so research money is tough to come by. Look up Thomas Seyfried, PhD. I'm following part of his protocol by cutting almost all sugars out of my diet. Since I'm in watchful waiting (2yrs. now) we'll see if I can further cut down any growth between now and my next biopsy.
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