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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hoover58 | @hoover58 | Nov 4 9:51am
In reply to @pdcar4756 "Interestingly, Mayo is credited and responsible for developing the Decipher test. Self advocacy is so important..." + (show)
@pdcar4756

Interestingly, Mayo is credited and responsible for developing the Decipher test. Self advocacy is so important when it comes to this disease. We are the customers. The doctors are the service providers. Many forget this relationship. Fortunately for me my urologist, after doing an MRI fusion biopsy on me asked my permission to do the Decipher Test. I gladly said yes. Don't let them take your voice away from you.

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about 30 minutes after I sent a message to the Radiation Oncologist I got a reply back from his nurse saying they will be happy to order the test for me, so I'm all set.

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michaelcharles | @michaelcharles | Nov 4 1:11pm
In reply to @tango32652 "What is AS?" + (show)
@tango32652

What is AS?

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Active Surveillance - generally for those with lower Gleason scores and/or other low risk factors, such as low Decipher results.
Lay person comment.

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gently | @gently | Nov 4 4:27pm

It is easy to suspect that the urologist doesn't know how to order the test. You might contact https://www.decipheraaccesspoint.com/ You also might have more luck with the oncologist.
Is it the urologist doing the biopsy?

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clandeboye1 | @clandeboye1 | Nov 5 5:28pm
In reply to @hoover58 "I'm thinking the same thing about this urologist. When I met with him before the biopsy..." + (show)
@hoover58

I'm thinking the same thing about this urologist.

When I met with him before the biopsy he told me that I would have to have someone there with me when he did the biopsy, which is a problem because I do not have anyone to travel with me. When I told him that he said "no problem, we can just do it in my office". I know biopsy's used to be done that way, and probably still are in some places, but I am not having a biopsy without anesthesia. Could he even do an MRI guided biopsy in his office?

Fortunately his intern came back into the room and said I could come alone if I stayed in the Care Hotel on their campus, so that's what I did.

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hoover 58 Why on earth would you need anesthesia for a simple MTI Fusion Biopsy ? Hopefully a Transperineal not a Transrectal one . And yes many Urologists have a small clinic where they perform these biopsies , at least they do in Canada -- Toronto , for example .

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1 reply
hoover58 | @hoover58 | Nov 6 6:00am
In reply to @clandeboye1 "hoover 58 Why on earth would you need anesthesia for a simple MTI Fusion Biopsy ?..." + (show)
@clandeboye1

hoover 58 Why on earth would you need anesthesia for a simple MTI Fusion Biopsy ? Hopefully a Transperineal not a Transrectal one . And yes many Urologists have a small clinic where they perform these biopsies , at least they do in Canada -- Toronto , for example .

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I admit it I'm a whimp!

If there was a medical reason to not give me anesthesia then I'd do it, but otherwise I want to be asleep

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2 replies
jc76 | @jc76 | Nov 6 7:16am
In reply to @hoover58 "I admit it I'm a whimp! If there was a medical reason to not give me..." + (show)
@hoover58

I admit it I'm a whimp!

If there was a medical reason to not give me anesthesia then I'd do it, but otherwise I want to be asleep

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@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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clandeboye1 | @clandeboye1 | Nov 6 8:14am
In reply to @hoover58 "I admit it I'm a whimp! If there was a medical reason to not give me..." + (show)
@hoover58

I admit it I'm a whimp!

If there was a medical reason to not give me anesthesia then I'd do it, but otherwise I want to be asleep

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I understand your concern . Each to his own . Personally I have a high treshold for pain - during my 2 Transperineal MRI Fusion Biopsies , they were a walk in the park . I requested the 2nd biopsy given the the negative 1st biopsy results were in conflict with a PI-RADS 5 MRI . The 2nd biopsy results were all Gleason 6 in the target area . I subsequentlly had a 2nd and 3rd opinion on these results whic were revised upwards .
In Canada I have yet to hear of a patient getting an anesthetic for any biopsy .
I have an associate , like you , worried to death and months of sleepless nights before his biopsy-
eventually everything went fine . Now he is worrying about any pain during his upcoming NanoKnife treatment .

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1 reply
bens1 | @bens1 | Nov 6 9:58am
In reply to @clandeboye1 "I understand your concern . Each to his own . Personally I have a high treshold..." + (show)
@clandeboye1

I understand your concern . Each to his own . Personally I have a high treshold for pain - during my 2 Transperineal MRI Fusion Biopsies , they were a walk in the park . I requested the 2nd biopsy given the the negative 1st biopsy results were in conflict with a PI-RADS 5 MRI . The 2nd biopsy results were all Gleason 6 in the target area . I subsequentlly had a 2nd and 3rd opinion on these results whic were revised upwards .
In Canada I have yet to hear of a patient getting an anesthetic for any biopsy .
I have an associate , like you , worried to death and months of sleepless nights before his biopsy-
eventually everything went fine . Now he is worrying about any pain during his upcoming NanoKnife treatment .

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I will join the crowd with anesthesia. I had a transrectal biopsy and was put under. I have no need to test my pain threshold. I have also spoken to people who have had it without anesthesia, on this site and externally, and some used the words "never again. As @clandeboye1 said, to each his own.

I have attached a pdf file on prostate research sources that I used during my process. Maybe it will help you as well.

Shared files

prostate research-10-18-24 (prostate-research-10-18-24.pdf)

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1 reply
jc76 | @jc76 | 5 days ago
In reply to @bens1 "I will join the crowd with anesthesia. I had a transrectal biopsy and was put under...." + (show)
@bens1

I will join the crowd with anesthesia. I had a transrectal biopsy and was put under. I have no need to test my pain threshold. I have also spoken to people who have had it without anesthesia, on this site and externally, and some used the words "never again. As @clandeboye1 said, to each his own.

I have attached a pdf file on prostate research sources that I used during my process. Maybe it will help you as well.

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@bens1
I agree @bens1. It is a personal decision. To me the stress and anxiety over it is solved by anesthesia. I was not given deep anesthesia (I think proponol along with relaxer) but it did require an anesthetists there. I felt nothing and remember nothing other than being relaxed.

I had another poster so scared of having the procedures done without anesthesia was conteplated not doing them because of this. That is way to much anxiety and stress to have when facing prostate cancer.

Have I every gone through a transpernia procedure (not biopsies) yes. I had my space/or done that way. It was dramatically much more stressful and uncomfortable and and painful. I could feel the pressure even though they use an anesthetic to numb area of entry and at the location for the space/or.

For some who can live with the anxiety and stress, or not have it, that is great. For those who have anxiety and stress over it should go for anesthesia. Adding more stress and anxiety when you are already dealing with prostate cancer is not something you want to add but do what you can to lesson it.

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