Decipher Test

Posted by hoover58 @hoover58, Nov 3, 2024

I had my third biopsy in the past 18 months in September - this one at the Mayo Clinic in Jacksonville. I have asked for a Decipher Test each time, but so far no luck getting it. I am 66 years old, gleason 4+3 on the last biopsy. When I asked the urologist at Mayo for the test he told me that the test is for people who have had a prostatectomy. I know that is not true. I feel like he has already made up his mind what my treatment should be and does not want any information that might contradict him. Has anyone else had trouble getting a urologist to order the test? It seems like it should be automatic after a biopsy.

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@jc76

@hoover58
I will be careful with my words here but my experience with Mayo Jacksonville urology department was not positive. I ended up going through Patient Advocacy.

The urologist I saw was one of those that said, "you won't die of prostate cancer, it will be something else." You will also see another post I posted where the same urologist wanted to do my biopsies via rectal. And then said it has a 2% more chance of infection but "you would only have to spend a couple of days in hospital if you did get it."

I did not accept his way of doing it and challenged it and had my cardiologist get involved who advised absolutely no issues with me having anesthesia.

I advised my PCP (Mayo) if he needed to refer me again to a urologist, I did not want to see the same one.

Mayo radiology/oncology was the division that gave me the information on Decipher and offered it to me to make a more specific diagnosis of my cancer risk. My decipher score came back at low risk where my biopsies had come back as intermediate.

I have posted many many times that I strongly suggest getting additional tests like Decipher, PSMA, bone, etc. to help clarify and get more specific information on your cancer diagnosis. AND get a second opinion.

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I read with regularity patients in the USA having an anesthetic when havingg a biopsy . This is the exception elsewhere . He in Canada I have yeet to meet anyone who had an anesthetic .
Additionally the USA , THE WORLD LEADER IN MANY FIELDS , ARE BEHIND IN PERFORMING Transperineal Biopsies . In fact several countries have banned the TRANSRECTAL procedure and a select few Urologists in the USA will no longer perform the outdated transrectal . In addition to the lower risk of infection . The transperineal has a better chance of reaching difficult to get at leisons , typically the ones a Urologist cannot detect on an DRE .
With respect to the Decipher Test . My recommendation as a first step after receiving your biopsy pathology report is : " Get a 2nd and 3rd opinion of the Gleason Score ."
I'm speaking of experience here , if you read my prior posts .

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My advice : Get a 2nd or 3rd opinion of your pathology report . YOU MAY FIND A CONFLICT IN THE GLEASON FINDINGS . If you read my prior postings - you will understand why .
Biopsy # 1 ALL TARGET AREA CORES NEGATIVE .
Biopsy # 2 All 6 Target area cores Gleason 3 + 3 = 6 , 2nd Opinion : ALL UPGRADED TO Gleason 3 + 4 = 7
3rd Opinion : 4 Cores Gleason 3 +3 = 6 2 Cores Gleason 3 + 4 = 7 Take your pick .
Both biopsies were TRANSPERINEAL MRI Fusion Biopsies . The 1st a Five Core in the Target area . The 2nd a 16 core , with 6 in the target area . Only cores in the target area showed cancer . I am currently on active surveillance
IF I WERE YOU -- I WOULD CHANGE UROLOGISTS FAST .

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@hoover58

I agree with you about the urology department. The week before I got my Decipher test results, I had a video meeting with the urologist, and he recommended I have Tulsa Pro Therapy. Since the radiologist ordered the Decipher Test I don't know if the urologist will see it. If he does I wonder if it would change his recommendation. He said he would ablate 1/3 of my prostate. He said Tulsa Pro is not FDA approved (wrong), that medicare will only partially pay for the procedure (I think wrong), that I would not be able to have surgery if the cancer returns (wrong), and that I would need to have an MRI every 6 months and a biopsy every year after Tulsa Pro (I think wrong).

I have not seen any discussion on how the decipher score impacts the decision to have Tulsa Pro, but it seems like leaving 2/3 of my prostate intact with a .9 decipher score is a bad idea.

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Correctamundo!! I don’t know why any doctor would leave ANY prostate tissue IN with that kind of decipher score. Get away from this a**hole pronto!
Look, Mayo is a great system but even great systems have clunkers in them. When I went to Sloan I was seen by the senior attending RO. He gave me a Prostate exam - I had it removed 5 yrs before - and almost killed me….I literally screamed - and he laughed and told me that I would need 39 sessions of radiation. A year later after many PSA’s I returned to start treatment and was seen by a new doctor.
“Where’s Dr F***face,” I asked. “Oh, he’s gone…thank God! But you didn’t hear that from me!”
“I didn’t care for him,” I said…
“No,” he replied, “not too many people did…”
And I then got 25 treatments - the newest research indicating it’s on a par with 39 and less time needed. So even the BEST of the best hospitals have losers on staff. You wouldn’t let an inept car mechanic work on your car - don’t let an inept physician treat your body!!

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I am 3+3 in one core and 3+4 in another core. I got the decider test but they were only able to test the 3+3 core because the 3+4 was too small to test. I was very disappointed because it was the 4 I was worried about

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@rice

I am 3+3 in one core and 3+4 in another core. I got the decider test but they were only able to test the 3+3 core because the 3+4 was too small to test. I was very disappointed because it was the 4 I was worried about

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@rice
Could you do another biopsy?
Speaking for myself I would want the Decipher test on the 3+4=7 as that is the one with most possible cancer aggression. The urologist doing your biopsies should have taken enough tissue to do this but not being a surgeon or urologist maybe there was a reason it was done to small.

I am not sure where you are going for treatments but would asked about another one or consider getting a second opinin from a different provider and explore another biopsy with need to address the area that came back 3+4=7.

I know this is redundant but my Decipher changed my treatment from Radiation and hormone treatments to just radiation. So you can see why I am a real promoter of this test.

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Glad you got the test. My experience at Mayo Rochester was completely different. They mentioned it, I kind of wondered if it might help in my decision, and BAM, he ordered the test using the tissue taken from an earlier biopsy by a doctor in a different state. Mayo took care of all the details of getting it done. That said, I'm not sure the test is a big factor. My risk was just in the low range (.42) but within a year the cancer growth had exploded to push hard against the prostate wall. So, went in to burn it out.

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@jc76

@hoover58 @clandeboye1
If you go to Mayo Jacksonville (which @hoover58 is talking about)they will not do a Fusion Biopsy transperineally without anesthesia. They will do it transrectal if you do not want or cannot have anesthesia.

The Mayo Jacksonville transrectal is done in an special procedure room. The Transperinial is done in a surgical room with anestheist there. Both are considered outpatient as do not require hospitalization and you are not admitted. Transrectal also comes with an increase in infection rate although not high.

Some have no problems with transrectal without anesthesia and others at facilities that offer transperinal without anesthesia but for me it is a very stressfull and anxiety procedure that the individual should decide what they want. I too feel the anxiety and stress over having it done without anesthesia is not something I want to endure, not the stress and anxiety over it. I had my fusion/biosies done transperinal with anesthesia.

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Thank you for this insight. Could you please offer information on how long it took for you to get the Transperinial biopsy appointment scheduled at Mayo Jacksonville? Is your Urologist with the Mayo clinic Jacksonville or were you referred to Mayo from another Urologist? I wonder if it makes a difference.

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@esteiny
As I mentioned my urologist wanted to do it transrectal. I said no and his reason was my cardiomyopathy. I got my HF and cardiology involved and they advised him there is not an issue with anesthesia. In my opinion it was just him trying to do it transrectal and not the additional involvment when done transpernial under anesthesia.

How long to get appt.: It took about 2 weeks to get the appointment after we resolved the type of procedure (only a couple of days as my HF doctor is Director of Heart Failure and Transplant and said no problem.
Is your urologist with Mayo: Yes
Wonder if it makesa a difference. Don't know but would in my opinion be restricted to referral for tests coming from Mayo doctors. I know second opinions are done there all the time but again that would be with a Mayo doctor.

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@jc76

@esteiny
As I mentioned my urologist wanted to do it transrectal. I said no and his reason was my cardiomyopathy. I got my HF and cardiology involved and they advised him there is not an issue with anesthesia. In my opinion it was just him trying to do it transrectal and not the additional involvment when done transpernial under anesthesia.

How long to get appt.: It took about 2 weeks to get the appointment after we resolved the type of procedure (only a couple of days as my HF doctor is Director of Heart Failure and Transplant and said no problem.
Is your urologist with Mayo: Yes
Wonder if it makesa a difference. Don't know but would in my opinion be restricted to referral for tests coming from Mayo doctors. I know second opinions are done there all the time but again that would be with a Mayo doctor.

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Thank you very much for your reply. This is good and helpful information.

Happy holidays!

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@hirejohn

Hi @colleenyoung - Just peaked at my earlier post and noticed that I misstated my Gleason score. I'm actually a Gleason 3+3. Currently awaiting Decipher results and will go from there. Active surveillance has been mentioned but not sure if that will work for me given family history of prostate cancer.

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Hi @colleenyoung - Thought I would provide an update now that I have my Decipher test results back. Unfortunately, my number came back at .78 which is quite high. So I'm now in that grey area with low clinical numbers (Gleason 3+3, low volume, most recent PSA of 3.8) and a very high Decipher genomic test. Have a few more genomic tests outstanding that will be looking specifically for gene mutations and have follow ups scheduled with a couple of different doctors before deciding on a treatment plan.

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