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With a Decipher score of 0.29 has anyone done Active Surveillance?

Posted by Miggie @miggie, Jul 20 1:44pm

Has anyone done Active Surveillance with a 0.29 Decipher Score?

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Profile picture for Jeff Win. . .
Jeff Win. . . | @jbwmo | Jul 22 10:14am
In reply to @miggie "His biopsy showed a 3+4 on 1 spot and there were 3 spots with a 3+3..." + (show)
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His biopsy showed a 3+4 on 1 spot and there were 3 spots with a 3+3 Gleason score. They did a biopsy on 12 spots.
The Decipher score came back Friday 0.29 on the 1 spot. At this time the cancer is not outside of the prostate gland according to the MRI and the Urologist. He is going to the best in Kansas City for a Urologist. His last PSA score was a 5.3 and it has gone up in the last 6 months. He is only 65. Jeff you are wonderful to reply I can’t thank you enough.

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@miggie
I went to KCUC for m issues and the team there did a great job. My Gleason was 5-3 and everything still in prostate. Had a Robotic removal 2 yrs ago and ended up with a few cells in the surgical margins. A year later started on Orgovyx and then 40 proton sessions started a month later. Surgery went well, Proton went well, Orgovyx went will with the normal fatigue issues. I will be off of the yearly regimen of daily Orgovyx at the end of July. My fatigue levels should ease in a month or so. PSA levels have been stable for the last 4 months at 0.04 so that is probably my nadir.

I just turned 70, tall and slender and in great health. Take several supplements and do lots of juicing.
Hope things go well with your family. Jeff

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punz | @punz | Jul 22 12:53pm
In reply to @keithl56 "@miggie I am in a similar situation regarding my biopsy (2 of 16 cores, a 3+3..." + (show)
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@miggie

I am in a similar situation regarding my biopsy (2 of 16 cores, a 3+3 and a 3+4 with 10% being 4) and am awaiting my Decipher score. My surgeon said that I may be able to do AS, but is actually starting a second phase of a clinical trial using aquablation which I may be a candidate for at Johns Hopkins. I believe that there are other centers with similar trials, maybe his in KC. Might be worth checking out. Only 2/3 in the trial get the aquablation with the remainder on AS to compare results.

The aquablation offers many advantages over RARP - not invasive (trans urethral), very little comparable side effects (ED, incontinence), shorter hospital stay. I'm just hoping that my co-morbidities don't disqualify me.

Good luck!

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@keithl56

Keep us posted with the aquablation trial, I am currently on AS and have a similar number(s) as you; my decipher test indicated low risk. FYI I had aquablation for BPH in January 2025

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punz | @punz | Jul 22 1:04pm
In reply to @miggie "His biopsy showed a 3+4 on 1 spot and there were 3 spots with a 3+3..." + (show)
Profile picture for Miggie @miggie

His biopsy showed a 3+4 on 1 spot and there were 3 spots with a 3+3 Gleason score. They did a biopsy on 12 spots.
The Decipher score came back Friday 0.29 on the 1 spot. At this time the cancer is not outside of the prostate gland according to the MRI and the Urologist. He is going to the best in Kansas City for a Urologist. His last PSA score was a 5.3 and it has gone up in the last 6 months. He is only 65. Jeff you are wonderful to reply I can’t thank you enough.

Jump to this post

@miggie

I know it's a shock when you hear the word cancer the best thing you and your husband can do is educate yourself about prostate cancer (you have time). The numbers are similar to my numbers (I'm on AS), having a PSA blood test done every 3 or 6 months and an MRI done yearly is what most doctors recommend for monitoring.

You may want to review this website below or on YouTube and watch a few videos. I found the info very helpful
https://pcri.org/
Best of luck!

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1 reply
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TommyG | @tdgillett | Jul 23 9:11am

My decipher was .45 and I am still on AS even with a more recent biopsy showing 4+3. Because of my age and other deets (see y profile) I'm waiting on treatment through 2026 with PSA tests every 3 months and another MRI in December. None of the treatment options seemed like a good fit for me.

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Miggie | @miggie | Jul 23 9:50am
In reply to @punz "@miggie I know it's a shock when you hear the word cancer the best thing you..." + (show)
Profile picture for punz @punz

@miggie

I know it's a shock when you hear the word cancer the best thing you and your husband can do is educate yourself about prostate cancer (you have time). The numbers are similar to my numbers (I'm on AS), having a PSA blood test done every 3 or 6 months and an MRI done yearly is what most doctors recommend for monitoring.

You may want to review this website below or on YouTube and watch a few videos. I found the info very helpful
https://pcri.org/
Best of luck!

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@punz
Thank you for sharing. It is so nice to connect with different people and read what they are going through.

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Moderator
Colleen Young, Connect Director | @colleenyoung | 3 days ago
In reply to @miggie "@punz Thank you for sharing. It is so nice to connect with different people and read..." + (show)
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@punz
Thank you for sharing. It is so nice to connect with different people and read what they are going through.

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@miggie, your friend is lucky to have you doing the research for him. I get how paralyzing the words "biopsy" and "cancer" can be. It's a lot to take in. How is your friend doing? Is he comfortable with the treatment plan suggested to him with his cancer care team?

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midwestjulyguy | @midwestjulyguy | 3 days ago
In reply to @miggie "@jeffmarc Jeff the Carcinoma is approximately 20% that is the 3+4. A 3+3 is 10%, Another..." + (show)
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@jeffmarc
Jeff the Carcinoma is approximately 20% that is the 3+4. A 3+3 is 10%, Another area is 3+3 is 5% and another is 3+3 is 20%. I talked to him about the Genetic Testing. The Dr. says that his prostate is not enlarged. That was probably me that posted about the Decipher Score of 0.29. I am a newbie to Mayo Connect so I so appreciate everyone's kindness and support. I will watch the videos. I am just a friend that he has trusted sharing this diagnosis with.

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@miggie many wonderful people here with lots of knowledge and experience. It’s helped me immensely wish I had found the support group before my surgery.

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1 reply
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jasonfarmer | @jasonfarmer | 3 days ago

Muggier I went with surgery after a 5.3 psa up in 1 year from 3.3. Was 3+3 before surgery but after surgery was 3+4 upon prostate dissecting in lab. Dicifer score as 93% . I do have ed and very minor incontinace @ 2 teaspoons a day. Ed getting implant in 2 weeks. I have no regrets I just wanted cancer out of my body presently cancer free undetected psa, it has been just over 3 years.

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Miggie | @miggie | 3 days ago
In reply to @jasonfarmer "Muggier I went with surgery after a 5.3 psa up in 1 year from 3.3. Was..." + (show)
Profile picture for jasonfarmer @jasonfarmer

Muggier I went with surgery after a 5.3 psa up in 1 year from 3.3. Was 3+3 before surgery but after surgery was 3+4 upon prostate dissecting in lab. Dicifer score as 93% . I do have ed and very minor incontinace @ 2 teaspoons a day. Ed getting implant in 2 weeks. I have no regrets I just wanted cancer out of my body presently cancer free undetected psa, it has been just over 3 years.

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@jasonfarmer
Jason good luck with your implant. Keep us posted how you are doing.

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Miggie | @miggie | 3 days ago
In reply to @midwestjulyguy "@miggie many wonderful people here with lots of knowledge and experience. It’s helped me immensely wish..." + (show)
Profile picture for midwestjulyguy @midwestjulyguy

@miggie many wonderful people here with lots of knowledge and experience. It’s helped me immensely wish I had found the support group before my surgery.

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@midwestjulyguy
This has been great to find all of you wonderful people sharing your stories. Plus it gives questions to ask. Thank you.

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