For us Decipher just confirmed high aggressiveness of cribriform cells and necessity of RP for better long term results. We are very glad that we insisted on having it done in spite of our urologist's refusal to order the test. IF your doctor refuses Decipher, find another doctor ASAP. Decipher test is very useful tool and if a doctor refuses to do it than his attitude points to ignorance and arrogance.
As I've previously shared on this site, I was leaning towards AS after all my clinical markers (PSA, MRI and Gleason) indicated low risk until my Decipher came back high risk. After further consultation with various doctors all at centers of excellence, factoring in a strong family history of prostate cancer and recognizing that I probably wasn't going to be comfortable with AS, I decided to go ahead with RARP at Cleveland Clinic. Four month out from surgery, no regrets as my post-op biopsy upgraded my Gleason score from 3+3 to 3+4, my first post-surgical PSA was "undetectable" and my surgical side effects have improved dramatically. So for me, my Decipher test definitely impacted my treatment decisions.
Best of luck with your journey.
Interesting info. Someone wrote that Medicare pays for the Decipher test. At the time of biopsy, I was "not" told that my "insurance" would not cover the Decipher test. I was still under my wife's medical plan in December 2024, but my Medicare had already kicked in mid-September. So, it "should" have been covered. I only learned of the Decipher test after my RP when reading this blog. That's when I asked and was told that my insurance would not pay for it. A couple weeks ago, I expressed to my urologist that I was angry that no one called me to see if I would be willing to pay for the Decipher test as cash out of pocket. My urologist's response was "now that we have the surgical pathology report documenting EPE, surgical margins, cribriform glands, and left seminal vesicle invasion (rolled up to a pT3b cancer classification), we know all we need to know...the Decipher test won't tell us anything more than we know now." I would like to hear from any urologists on this blog to tell me whether such a statement is "true." I also had separate Genetic screening done that tested for scores and scores of genes and mutations. I do not have one cancer gene or mutation of any kind in my body, per that test. So, needless to say, I am confused. I guess you can have prostate cancer without BRCA genes or another mutations. Thanks in advance to any urologists who respond to my question above.
I would like to see you results. Had Prolaris one year ago at another institution but Mayo wants Decipher on repeat biopsy this year . Said I can consider surveillance if decipher is low but Mayo preference is I go ahead and treat. My Prolaris was favorable for AS so on pins and needles awaiting decipher.
I had Gleason score of 8 and the decipher score was .84 which confirmed my prostate cancer is aggressive. This help me in knowing my treatment plan was correct and since my cancer is small and contained in the prostate that going hard at it is the best plan of action
My husband, Doug (he is 81) had a relatively low PSA of 6.4 but because it increased quickly, the doctor sent him to a urologist who sent him for a special MRI. The results were devastating. The urologist immediately arranged for a biopsy, which resulted in a Gleason (4 + 5)9. He recommended radiation for 12 weeks. We met with the head of radiology and he suggested before we start treatment that we have a Decipher test done and that the test would be done from the biopsy samples. When he received the test result, the radiologist called us to say that Doug’s Dehipher score on a scale from .01 to 1.00 was .99. He aid that with the urologist they were calling in the oncologist who would be the lead on Doug’ case. Doug has advanced prostate cancer (it had already broken through the capsule and was in nerve bundles and seminal vesicles. We have been on a course of 1000mg of Abiraterone with Predisone daily; in addition to Lupron Depot once every three months. The treatment will be completed in December. We shall see what happens from then. I am very glad we had the Decipher test. We also had other genome testing regarding Doug’s family. But the Decipher results were what quickly pulled the team togther. We have great doctors and for that I am very thankful.
I had decided on surgery and after having decipher test showing I was at 93% (highly aggressive) it just confirmed decision to do surgery. So yes I feel decipher test is worth doing from my point of view.
@jasonfarmer - what surgical procedure are you having? I’m looking into the single port robotic prostatectomy but my decipher score is .95 and not sure if that is too aggressive for that approach.
@jasonfarmer - what surgical procedure are you having? I’m looking into the single port robotic prostatectomy but my decipher score is .95 and not sure if that is too aggressive for that approach.
Ashley I had robotic surgery @26 months ago. I have no regrets having surgery it was right for me. Others I am sure have no regrets with their decision to follow a different path. I am still presently cancer free and doing well. Side effects from surgery ? Yes, but still happy with decision. ED yes but Trimix injections cover that. Incontence yes still need 1 pad in 24 hours for light dribble. I had axonics implant for over active bladder in June this year and happy with that procedure. Was having to pee @ 15 times a day now only @8 or 9 . I believe the right doctor helps guide the way forward. And can offer solutions for side effects or at least help us get through them. Hoping the best for you and this helps.
Interesting info. Someone wrote that Medicare pays for the Decipher test. At the time of biopsy, I was "not" told that my "insurance" would not cover the Decipher test. I was still under my wife's medical plan in December 2024, but my Medicare had already kicked in mid-September. So, it "should" have been covered. I only learned of the Decipher test after my RP when reading this blog. That's when I asked and was told that my insurance would not pay for it. A couple weeks ago, I expressed to my urologist that I was angry that no one called me to see if I would be willing to pay for the Decipher test as cash out of pocket. My urologist's response was "now that we have the surgical pathology report documenting EPE, surgical margins, cribriform glands, and left seminal vesicle invasion (rolled up to a pT3b cancer classification), we know all we need to know...the Decipher test won't tell us anything more than we know now." I would like to hear from any urologists on this blog to tell me whether such a statement is "true." I also had separate Genetic screening done that tested for scores and scores of genes and mutations. I do not have one cancer gene or mutation of any kind in my body, per that test. So, needless to say, I am confused. I guess you can have prostate cancer without BRCA genes or another mutations. Thanks in advance to any urologists who respond to my question above.
@rlpostrp
Medicare traditional not Advantage (if Advantage depends not that company) does pay for Decipher.
Was you wife still working when when both of you covered under her health plan? If so her insurance was primary. That is the company that your provider would have contacted. Was it your wife's plan that said insurance would not cover it?
Regarding Decipher. If your insurance does not pay for it Decipher has many programs to pay for the service which reduces the cost significantly. When I asked if I wanted Decipher and said yes Decipher sent me an information packet on the test and how the company would help pay if insurance did not pay or cover it.
Ashley,
As I posted above, my .78 Decipher caused me to rethink my situation after leaning towards AS with low risk clinical markers. Apparently my situation was somewhat rare with the high risk Decipher and the low risk PSA, MRI and biopsy results. Probably made my decision more difficult but ultimately decided to go with a single port prostatectomy at a center of excellence and by a very experienced surgeon after doing significant research and consulting with several doctors. As is often the case with a high Decipher, I was upgraded from a Gleason 3+3 to a 3+4 with my post-surgical biopsy. Four months out now from the procedure, I have no regrets considering the upgrade and the fact that my first post-surgical PSA was undetectable. Also side effects have diminished considerably. Only time will tell whether my cancer recurs but again I'm comfortable that I made the best decision for me at the time.
All the best as you continue with your due diligence to arrive at a decision which is best for you.
I would like to see you results. Had Prolaris one year ago at another institution but Mayo wants Decipher on repeat biopsy this year . Said I can consider surveillance if decipher is low but Mayo preference is I go ahead and treat. My Prolaris was favorable for AS so on pins and needles awaiting decipher.
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For us Decipher just confirmed high aggressiveness of cribriform cells and necessity of RP for better long term results. We are very glad that we insisted on having it done in spite of our urologist's refusal to order the test. IF your doctor refuses Decipher, find another doctor ASAP. Decipher test is very useful tool and if a doctor refuses to do it than his attitude points to ignorance and arrogance.
-
Like -
Helpful -
Hug
1 ReactionAs I've previously shared on this site, I was leaning towards AS after all my clinical markers (PSA, MRI and Gleason) indicated low risk until my Decipher came back high risk. After further consultation with various doctors all at centers of excellence, factoring in a strong family history of prostate cancer and recognizing that I probably wasn't going to be comfortable with AS, I decided to go ahead with RARP at Cleveland Clinic. Four month out from surgery, no regrets as my post-op biopsy upgraded my Gleason score from 3+3 to 3+4, my first post-surgical PSA was "undetectable" and my surgical side effects have improved dramatically. So for me, my Decipher test definitely impacted my treatment decisions.
Best of luck with your journey.
-
Like -
Helpful -
Hug
2 ReactionsInteresting info. Someone wrote that Medicare pays for the Decipher test. At the time of biopsy, I was "not" told that my "insurance" would not cover the Decipher test. I was still under my wife's medical plan in December 2024, but my Medicare had already kicked in mid-September. So, it "should" have been covered. I only learned of the Decipher test after my RP when reading this blog. That's when I asked and was told that my insurance would not pay for it. A couple weeks ago, I expressed to my urologist that I was angry that no one called me to see if I would be willing to pay for the Decipher test as cash out of pocket. My urologist's response was "now that we have the surgical pathology report documenting EPE, surgical margins, cribriform glands, and left seminal vesicle invasion (rolled up to a pT3b cancer classification), we know all we need to know...the Decipher test won't tell us anything more than we know now." I would like to hear from any urologists on this blog to tell me whether such a statement is "true." I also had separate Genetic screening done that tested for scores and scores of genes and mutations. I do not have one cancer gene or mutation of any kind in my body, per that test. So, needless to say, I am confused. I guess you can have prostate cancer without BRCA genes or another mutations. Thanks in advance to any urologists who respond to my question above.
-
Like -
Helpful -
Hug
1 ReactionI had Gleason score of 8 and the decipher score was .84 which confirmed my prostate cancer is aggressive. This help me in knowing my treatment plan was correct and since my cancer is small and contained in the prostate that going hard at it is the best plan of action
-
Like -
Helpful -
Hug
2 ReactionsMy husband, Doug (he is 81) had a relatively low PSA of 6.4 but because it increased quickly, the doctor sent him to a urologist who sent him for a special MRI. The results were devastating. The urologist immediately arranged for a biopsy, which resulted in a Gleason (4 + 5)9. He recommended radiation for 12 weeks. We met with the head of radiology and he suggested before we start treatment that we have a Decipher test done and that the test would be done from the biopsy samples. When he received the test result, the radiologist called us to say that Doug’s Dehipher score on a scale from .01 to 1.00 was .99. He aid that with the urologist they were calling in the oncologist who would be the lead on Doug’ case. Doug has advanced prostate cancer (it had already broken through the capsule and was in nerve bundles and seminal vesicles. We have been on a course of 1000mg of Abiraterone with Predisone daily; in addition to Lupron Depot once every three months. The treatment will be completed in December. We shall see what happens from then. I am very glad we had the Decipher test. We also had other genome testing regarding Doug’s family. But the Decipher results were what quickly pulled the team togther. We have great doctors and for that I am very thankful.
@jasonfarmer - what surgical procedure are you having? I’m looking into the single port robotic prostatectomy but my decipher score is .95 and not sure if that is too aggressive for that approach.
Ashley I had robotic surgery @26 months ago. I have no regrets having surgery it was right for me. Others I am sure have no regrets with their decision to follow a different path. I am still presently cancer free and doing well. Side effects from surgery ? Yes, but still happy with decision. ED yes but Trimix injections cover that. Incontence yes still need 1 pad in 24 hours for light dribble. I had axonics implant for over active bladder in June this year and happy with that procedure. Was having to pee @ 15 times a day now only @8 or 9 . I believe the right doctor helps guide the way forward. And can offer solutions for side effects or at least help us get through them. Hoping the best for you and this helps.
@rlpostrp
Medicare traditional not Advantage (if Advantage depends not that company) does pay for Decipher.
Was you wife still working when when both of you covered under her health plan? If so her insurance was primary. That is the company that your provider would have contacted. Was it your wife's plan that said insurance would not cover it?
Regarding Decipher. If your insurance does not pay for it Decipher has many programs to pay for the service which reduces the cost significantly. When I asked if I wanted Decipher and said yes Decipher sent me an information packet on the test and how the company would help pay if insurance did not pay or cover it.
Ashley,
As I posted above, my .78 Decipher caused me to rethink my situation after leaning towards AS with low risk clinical markers. Apparently my situation was somewhat rare with the high risk Decipher and the low risk PSA, MRI and biopsy results. Probably made my decision more difficult but ultimately decided to go with a single port prostatectomy at a center of excellence and by a very experienced surgeon after doing significant research and consulting with several doctors. As is often the case with a high Decipher, I was upgraded from a Gleason 3+3 to a 3+4 with my post-surgical biopsy. Four months out now from the procedure, I have no regrets considering the upgrade and the fact that my first post-surgical PSA was undetectable. Also side effects have diminished considerably. Only time will tell whether my cancer recurs but again I'm comfortable that I made the best decision for me at the time.
All the best as you continue with your due diligence to arrive at a decision which is best for you.
-
Like -
Helpful -
Hug
1 Reaction@michael91153
I am back in town and here is a copy of my Decipher test.