Gleason 3+3 to Gleason 4+5 in 7 months.

Posted by Chevy @stanshintaku, 5 days ago

Hello
The lesion sample from the 3/2024 mpMRI fused biopsy was read as Gleason 3+3. After detailed option discussions, both the urology surgeon and radiation oncologist strongly recommended the monitoring option. A 12/2024 confirmatory biopsy samples showed a substantial aggressiveness upgrade to Gleason scores of 4+5 and 3+4. That was devastating to say the least.

With a subsequent 12/23/2024 PET CT PSMA scan, I was told I was lucky that there wasn’t any evidence the cancer had spread beyond the prostate (yet). I had played the odds by electing to monitor and I rolled snake eyes. I just want it out now, ASAP. I believe things can get worse and my option less promising very soon. I have an earliest available appointment with my surgeon on 1/17/2025.

As such and concurrently, I fly to Rochester this coming Tuesday 1/7/2015 to get an assessment and recommendation by the MAYO Clinic. I feel a second opinion by a top institution is justified given the aggressiveness. I have an appointment with Dr. Tollefson I believe is a surgeon.

Some questions I have:
1. Is RP now the best option. It seem having it completely removed now is best.
2. Should I also see a radiation oncologist while at MAYO just in case there are good radiation options I should consider? They only scheduled me for the one surgeon appointment.
3. Is there something I should take, avoid or do in the meantime for the cancer’s aggressive character? Shouldn’t we be trying to determine more about the cancer’s DNA and character?
4. Is my extreme urgency justified (based on Gleason 6 to 9 in 7 mos.)? I just feel it’s not long before it metastasizes.

Thank you for listening and your comments.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Chevy, consider starting ADT. Ask Tollefson for script for orgovyx and sample, if he agrees on Tuesday . Call the venue where you had the biopsy and ask for expedited Decipher testing. Tollefson's expertise is prostate surgery. You might look at his videos if you are idle on Sunday.
I'd want radiation. I'd want hypofractionated 5 treatment MRI guided treatment. When I checked last summer, none of the Mayos had the equipment. Consider video appointment because you can get them sooner and don't waste time traveling around. Often you can grab an earlier appointment with someone's cancellation.
ADT has the potential to stop the growth of the tumor and reduce its size. My understanding is that both surgeons and radiologists prefer that prostate patients take it for two months prior to treatment. But Tollefson will have a plan.
I would definitely want to see a radiologist before deciding
Sorry this happened to you. Safe trip. Bless your journey.

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Sorry you are going through this, my experience started in July of last year.
If your cancer is aggressive, I would think your doctors would put on on ADT drugs to a least stop it from progressing. My PSA went from 1.1 to 1.9 over the course of a year (2021-2022) I skipped my annual physical and blood tests in 2023 and in July of 2024 when I had my physical. PSA was 62, biopsy in August, Gleason 4+5. PSMA PET scan shows large tumor behind prostate, right lymph node, and in pelvis bones.
Doc put me on ADT drugs immediately and has of Dec, my PSA has dropped to 0.6.
They also did genetic tests on my blood and biopsy samples, I have the BRCA 2 gene, which means I am very high risk for prostate and other cancers.
Just thought I would share this because you don’t want to get to my stage of this disease.
I might have radiation in March, depending on how much the cancer growths have shrunk/died from the ADT treatment. I cannot be cured, but I am treatable for now.

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Prostate Cancer Foundation pcf.org has free Patient Guides that can be downloaded or requested in hard copy.
Patrick Walsh MD's book Surviving Prostate Cancer is a resource appreciated by many on this site including me.
You may be asked many questions by men on this forum including your age, PSA results, number of Biopsy samples taken each time and general health.
Surgery or radiation are the primary treatment choices.
At 72, I had surgery for Gleason 9, and would choose surgery again.
Hopefully your 2d opinion will provide insightful information.
I understand the whirlwind urgency; I had RP 4 wks after biopsy.
Best wishes.

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Professional PT for Kegel/pelvic floor: I was able to squeeze in one visit before my surgery and it was very helpful to me. Also continued PT a couple of weeks postop.

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@stanshintaku
I can see other poster providing information to you.

You are going to Mayo Rochester what in my opinion is best medical clinic out there. I go to Mayo Jacksonville.

Asked the question on your list to the specialist at Mayo. They have the medical expertise to be able to anser you by medical experts. The available treatment options continue to change over the years and even some new ones since I was diagnosed in January of 2023.

You have already had an important test the PSMA. Asked Mayo about Decipher test. I did not know about it until my Mayo R/O mentioned to me after my diagnosis. It is a genetic test that uses the same biopsies taken already to determine a more precise aggressiveness of your cancer.

My initial Gleason Score indicated I was intermediate risk level. The Decipher test came back at low risk. This changed my treatment recommendations (from two different medical facilities) to radiation only versus radiation and hormone treatments. I and many others mentioned it from personal expereince and something you should asked your urologist, surgeon, R/O about if you have not had it.

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@chevy Here is a link to a ucla web site talking about the Mirage randomized trial and the importance of having a radiation machine that has built in MRI vs fused images. The Mridian is one machine, which I had, and Elekta is another. Narrow margins around the prostate impact healthy tissue and toxicity/side effects.
https://www.uclahealth.org/news/release/mri-guided-radiation-therapy-reduces-long-term-side-effects

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@johnernest

Sorry you are going through this, my experience started in July of last year.
If your cancer is aggressive, I would think your doctors would put on on ADT drugs to a least stop it from progressing. My PSA went from 1.1 to 1.9 over the course of a year (2021-2022) I skipped my annual physical and blood tests in 2023 and in July of 2024 when I had my physical. PSA was 62, biopsy in August, Gleason 4+5. PSMA PET scan shows large tumor behind prostate, right lymph node, and in pelvis bones.
Doc put me on ADT drugs immediately and has of Dec, my PSA has dropped to 0.6.
They also did genetic tests on my blood and biopsy samples, I have the BRCA 2 gene, which means I am very high risk for prostate and other cancers.
Just thought I would share this because you don’t want to get to my stage of this disease.
I might have radiation in March, depending on how much the cancer growths have shrunk/died from the ADT treatment. I cannot be cured, but I am treatable for now.

Jump to this post

Thank you so much for sharing.

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@gently

Chevy, consider starting ADT. Ask Tollefson for script for orgovyx and sample, if he agrees on Tuesday . Call the venue where you had the biopsy and ask for expedited Decipher testing. Tollefson's expertise is prostate surgery. You might look at his videos if you are idle on Sunday.
I'd want radiation. I'd want hypofractionated 5 treatment MRI guided treatment. When I checked last summer, none of the Mayos had the equipment. Consider video appointment because you can get them sooner and don't waste time traveling around. Often you can grab an earlier appointment with someone's cancellation.
ADT has the potential to stop the growth of the tumor and reduce its size. My understanding is that both surgeons and radiologists prefer that prostate patients take it for two months prior to treatment. But Tollefson will have a plan.
I would definitely want to see a radiologist before deciding
Sorry this happened to you. Safe trip. Bless your journey.

Jump to this post

Thank you so much for the tips and comments!

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You got some great recommendations. Get that decipher test. Discuss getting on ADT before surgery or radiation. Get genetic testing, Mayo will definitely do it for you, just ask.

1. Surgery is one way to resolve it, Radiation works just about the same as surgery long-term. Then there are the other non-radiation treatments like HIFU, cryotherapy, TULSA-PRO or more. You have many options.

2. As others have said, Seeing a radiation oncologist is essential. When you go to a surgeon, they recommend surgery. You want to have many more options to pick from, radiation is very successful and you will Probably not have ED after having radiation.

3. The genetic test is one thing you need to do. Getting on ADT Should stop your cancer from growing, they frequently want you to do it for a few months before radiation. There’s really nothing else in the character of your cancer, The Gleason score and decipher score tell you the most right now.

4. A Gleason nine is definitely aggressive, So you don’t want to wait long before doing something. ADT Is what almost all of us start using to keep the cancer under control.

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@michaelcharles

Prostate Cancer Foundation pcf.org has free Patient Guides that can be downloaded or requested in hard copy.
Patrick Walsh MD's book Surviving Prostate Cancer is a resource appreciated by many on this site including me.
You may be asked many questions by men on this forum including your age, PSA results, number of Biopsy samples taken each time and general health.
Surgery or radiation are the primary treatment choices.
At 72, I had surgery for Gleason 9, and would choose surgery again.
Hopefully your 2d opinion will provide insightful information.
I understand the whirlwind urgency; I had RP 4 wks after biopsy.
Best wishes.

Jump to this post

Thank you
You were very decisive.

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