1. < Prostate Cancer

Decipher Test

Posted by hoover58 @hoover58, Nov 3 10:50am

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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clandeboye1 | @clandeboye1 | Dec 7 11:31am
In reply to @jc76 "@hoover58 I will be careful with my words here but my experience with Mayo Jacksonville urology..." + (show)
@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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clandeboye1 | @clandeboye1 | Dec 7 11:41am

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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heavyphil | @heavyphil | Dec 7 2:22pm
In reply to @hoover58 "I agree with you about the urology department. The week before I got my Decipher test..." + (show)
@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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rice | @rice | Dec 7 4:15pm

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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1 reply
jc76 | @jc76 | Dec 8 6:12am
In reply to @rice "I am 3+3 in one core and 3+4 in another core. I got the decider test..." + (show)
@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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cstrutt52 | @cstrutt52 | Dec 8 10:33am

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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