Why are urologists dismissive about Decipher?

Posted by topf @topf, Apr 25 6:31pm

I have talked to four urologists. All four told me that the Decipher score does not change their assessment. On the other hand, the oncologist and the three radiologists I talked to all stressed it. Why is it perceived so differently?

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Profile picture for rlpostrp @rlpostrp

I noticed the same thing. I first learned of the Decipher test a good month "after" my DaVinci Robotic-assisted RP. I posted a few things here, and nearly everyone asked: "What is your Decipher Test score?" I had no clue what they were talking about, so I researched it. I contacted my urologist asking whey he didn't order it? His first reply was that he tried, but that my insurance wouldn't pay for it." I told him that I was upset...upset that he never told me that he supposedly got an insurance denial, which would have offered me the opportunity to pay cash for the Decipher test. I got not reply (this was all "patient portal messaging"). I thought: "Wait a minute, at the time of biopsy, I had Medicare as well as being on my wife's outstanding health benefit plan. Fast forward a couple months to the point I was now divorced, but still on Medicare obviously. I contacted my Medical Advantage Plan, who said that the Decipher Test is approved for payment. Now I was REALLY ANGRY. So, at this point I am post-op having had my prostate, seminal vesicles, and vas deferens removed. I messaged my urologist back that I want the Decipher Test. His first response was " we don't need it now, we know everything we need to know based on the surgical pathology report" (perineurial invasion, EPE, surgical margins, left seminal vesicle invasion, and cribriform glands). I said, "nooo...we DON'T know everything we need to know...we don't know risk factor and probability of recurrence or metastasis and when." I "directed" my urologist to order the Decipher Test on my prostate tissue (probably better than doing it on biopsy core samples). So the test is ordered, and I am three weeks into the six week turn around time for the results. So...I totally agree...I guess there is a mindset or school of thought by some urologists that the Decipher Test is not worth the time or effort, but I don't know why, and of course, a urologist would never share their reasoning. I am still very angry that he claimed that my insurance would not pay for it. I think that was a convenient lie for the sake that he either didn't want to order the test or that he forgot to order the test.

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Excellent post rl, so glad you called him on it! The mindset of surgeons is godlike…
A friend’s wife is currently going thru breast Ca. His local surgeon told him that he’ll just remove the rest of the tumor - which had positive biopsy margins - and “she’ll be just fine”. The biopsy (he texted it to me) showed a rare, malignant form of cancer which spreads aggressively.
I erupted when I heard this and got him to go to Moffitt in Tampa. So now they are doing a complete work up with a variety of tests; will do surgery first followed by whatever is necessary.
Unbelievable what still goes on out there…
Phil

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My guess is that the experience you describe is related to your specific diagnosis and the follow-up treatment options that surgeons versus radiologists will offer. Decipher is of varying value in guiding treatment options, based on a man's Gleason score and his other clinical diagnosis specifics.

The Decipher test analyzes gene expression in tumor tissue to predict the risk of metastasis and prostate cancer-specific mortality.

Most references indicate that a Decipher score is best for guiding treatment recommendations in patients with intermediate-risk prostate cancer...Gleason 7...both 3+4 and 4+3.

A Decipher score for a man diagnosed with Gleason 7 can reclassify his risk (based on a Clinical/Genomic model) to better inform a treatment choice.

Active surveillance can be recommended for men with Gleason 3+4 and a low Decipher scores (< 0.45)...this was my situation.

Definitive therapy (surgery or radiation) may be a better choice for men with Gleason 7 men who have a Decipher score between 0.45–0.60.

Adding androgen deprivation therapy (ADT) to radiation, may be recommended for men with Gleason 4+3 and a high Decipher score (>0.60).

Decipher could provide value in high-risk men (Gleason 8–10), if longer-duration ADT or other escalations are being considered. However, its impact on changing treatment management, for Gleason 8-10 cases, is generally of limited value, since aggressive treatment is often standard.

In low-risk cases, men with Gleason 6, Decipher is usually of limited value, since active surveillance is typically recommended. Of course in certain high volume Gleason 6 it may be considered, if there's a suspicion of Gleason score undergrading.

Bottom Line: The Decipher score's value depends on how definitive your clinical results are in determining your best treatment option(s). I'm glad I had it done, as it was a key piece of information guiding my decision to start AS.

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We experienced the same with our team - the radiologist spoke with the oncologist an then with me. My husband is Gleason 9, 81 years old an a Decipher of .99 (the highest score). The plan of treatment was radiation (12 weeks) followed by 2 years of Aberaterone (1000 mg a day) with 5 mg prednisone, an Lupron every 3 months. My husband outlook is not good. The idea was to keep the hormones at bay an the cancer growth could be controlled. He looks horrible and feels horrible. We have our next appt. In 5 weeks. We shall see. So to answer your question - the Decipher predicts what your outlook is from your biopsy. This is one before you begin treatment.

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Profile picture for handera @handera

My guess is that the experience you describe is related to your specific diagnosis and the follow-up treatment options that surgeons versus radiologists will offer. Decipher is of varying value in guiding treatment options, based on a man's Gleason score and his other clinical diagnosis specifics.

The Decipher test analyzes gene expression in tumor tissue to predict the risk of metastasis and prostate cancer-specific mortality.

Most references indicate that a Decipher score is best for guiding treatment recommendations in patients with intermediate-risk prostate cancer...Gleason 7...both 3+4 and 4+3.

A Decipher score for a man diagnosed with Gleason 7 can reclassify his risk (based on a Clinical/Genomic model) to better inform a treatment choice.

Active surveillance can be recommended for men with Gleason 3+4 and a low Decipher scores (< 0.45)...this was my situation.

Definitive therapy (surgery or radiation) may be a better choice for men with Gleason 7 men who have a Decipher score between 0.45–0.60.

Adding androgen deprivation therapy (ADT) to radiation, may be recommended for men with Gleason 4+3 and a high Decipher score (>0.60).

Decipher could provide value in high-risk men (Gleason 8–10), if longer-duration ADT or other escalations are being considered. However, its impact on changing treatment management, for Gleason 8-10 cases, is generally of limited value, since aggressive treatment is often standard.

In low-risk cases, men with Gleason 6, Decipher is usually of limited value, since active surveillance is typically recommended. Of course in certain high volume Gleason 6 it may be considered, if there's a suspicion of Gleason score undergrading.

Bottom Line: The Decipher score's value depends on how definitive your clinical results are in determining your best treatment option(s). I'm glad I had it done, as it was a key piece of information guiding my decision to start AS.

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Excellent post - we are glad my husband hat it one as well. Our urologist administers the Lupron (I should say the NP administers it). But our oncologist leads the team a she developed the plan of action with the urologist a radiologist. We see her every three months for blood tests an an exam.

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Profile picture for ellen45 @ellen45

We experienced the same with our team - the radiologist spoke with the oncologist an then with me. My husband is Gleason 9, 81 years old an a Decipher of .99 (the highest score). The plan of treatment was radiation (12 weeks) followed by 2 years of Aberaterone (1000 mg a day) with 5 mg prednisone, an Lupron every 3 months. My husband outlook is not good. The idea was to keep the hormones at bay an the cancer growth could be controlled. He looks horrible and feels horrible. We have our next appt. In 5 weeks. We shall see. So to answer your question - the Decipher predicts what your outlook is from your biopsy. This is one before you begin treatment.

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I’ve actually run into somebody who had a decipher score of 1. Surprised me I thought .99 was the highest.

If your husband has a lot of fatigue from taking Zytiga and prednisone It May help for him to increase to 10 mg of prednisone instead of 5 mg. 10 mg is one of the standard dosages for prednisone with Zytiga but doctors usually start with 5 mg since that works for most people. I have one guy I have been mentoring who was so fatigued he would wake up in the morning and then have to go back to sleep for three hours. I told him about taking 10 mg and he got approval from his doctor and it made a big difference in his fatigue.

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decipher scoring is more for treatment and used by radiologist. My Gleason is 6, and Decipher 0.78 high, looking at treatment options. Any views on proton therapy and side effects. Any experience with ultrahypofractionated 5 sessions and centers doing it. Are side effects going to affect my QOL? Concerned

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Profile picture for nalubabuji2002 @nalubabuji2002

decipher scoring is more for treatment and used by radiologist. My Gleason is 6, and Decipher 0.78 high, looking at treatment options. Any views on proton therapy and side effects. Any experience with ultrahypofractionated 5 sessions and centers doing it. Are side effects going to affect my QOL? Concerned

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While the decipher score may have something to do with treatment. You can have radiation or surgery with your Gleason 6. Radiation does cause many fewer erectile issues, At least for a few years.

You call it ultrahypofractionated but it actually is just SBRT radiation, No need to use the fancy words when that’s really what’s happening. My brother had a Gleason 4+3 and a couple years ago had five sessions of SBRT and it has worked quite well for him, so far. He did have some urinary issues and had to go on Flomax for a few months, Those problems are gone. It’s very common for people to have five sessions of SBRT,

The decipher score is more intended to tell you how likely you are to have a reoccurrence no matter what kind of treatment you have.

With a Gleason six it’s unusual to have such a high decipher score. Were other things found in your biopsy that you have not mentioned. The question is does your biopsy show things that SBRT radiation may not be sufficient to Eliminate?

Proton therapy is a tighter beam that affects less nearby tissue. Proton radiation is probably going to be the standard in five or 10 years. It used to be they had to build a building for that proton machine, Now they can put it in one or two rooms..

The thing is, it’s very unlikely that SBRT is going to cause issues.

Here’s some more information about how SBRT radiation causes very low incidences of other cancers

Stanford.edu

In a study of about 145,000 men with prostate cancer, the team found that the rate of developing a later cancer is 0.5% higher for those who received radiation treatment than for those who did not. Among men who received radiation, 3% developed another cancer, while among those who were treated without radiation, 2.5% developed another cancer.
https://med.stanford.edu/news/all-news/2022/070/prostate-radiation-slightly-increases-the-risk-of-developing-ano.html

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Profile picture for jeff Marchi @jeffmarc

While the decipher score may have something to do with treatment. You can have radiation or surgery with your Gleason 6. Radiation does cause many fewer erectile issues, At least for a few years.

You call it ultrahypofractionated but it actually is just SBRT radiation, No need to use the fancy words when that’s really what’s happening. My brother had a Gleason 4+3 and a couple years ago had five sessions of SBRT and it has worked quite well for him, so far. He did have some urinary issues and had to go on Flomax for a few months, Those problems are gone. It’s very common for people to have five sessions of SBRT,

The decipher score is more intended to tell you how likely you are to have a reoccurrence no matter what kind of treatment you have.

With a Gleason six it’s unusual to have such a high decipher score. Were other things found in your biopsy that you have not mentioned. The question is does your biopsy show things that SBRT radiation may not be sufficient to Eliminate?

Proton therapy is a tighter beam that affects less nearby tissue. Proton radiation is probably going to be the standard in five or 10 years. It used to be they had to build a building for that proton machine, Now they can put it in one or two rooms..

The thing is, it’s very unlikely that SBRT is going to cause issues.

Here’s some more information about how SBRT radiation causes very low incidences of other cancers

Stanford.edu

In a study of about 145,000 men with prostate cancer, the team found that the rate of developing a later cancer is 0.5% higher for those who received radiation treatment than for those who did not. Among men who received radiation, 3% developed another cancer, while among those who were treated without radiation, 2.5% developed another cancer.
https://med.stanford.edu/news/all-news/2022/070/prostate-radiation-slightly-increases-the-risk-of-developing-ano.html

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thank you. I am on my way to the Mayo clinic and hopefully will get second opinion. My biopsy showed left sided lesion, which was Gleason 6, and was heading for active surveying till the Decipher showed up high. I am leaning towards Proton therapy at this time and I was referring to 5 treatments with proton therapy and not SBRT with photon. Most centers do 28 and more treatments. Any one with experience with proton therpy for prostate cance and side effects.

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thank you. I am on my way to the Mayo clinic and hopefully will get second opinion. My biopsy showed left sided lesion, which was Gleason 6, and was heading for active surveying till the Decipher showed up high. I am leaning towards Proton therapy at this time and I was referring to 5 treatments with proton therapy and not SBRT with photon. Most centers do 28 and more treatments with protons normally. Any one with experience with proton therapy for prostate cancer and side effects.

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Profile picture for nalubabuji2002 @nalubabuji2002

thank you. I am on my way to the Mayo clinic and hopefully will get second opinion. My biopsy showed left sided lesion, which was Gleason 6, and was heading for active surveying till the Decipher showed up high. I am leaning towards Proton therapy at this time and I was referring to 5 treatments with proton therapy and not SBRT with photon. Most centers do 28 and more treatments. Any one with experience with proton therpy for prostate cance and side effects.

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I know a few people that have had proton therapy. It really is equivalent to SBRT, but a different machine. As you probably know, there is a lower chance of spread to different areas are outside the prostate, and a slightly reduced chance of cancers as a result.

I really not heard of any problems other than the same sort of problems people have with SBRT. The most common problem is proctitis where you are have a short-term problem with urinary issues.

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