Gleason 8 diagnosis at 51: Likely opting for surgery

Posted by topf @topf, Mar 13 6:57am

I just got diagnosed with a Gleason 8 cancer and I am only 51. I think I will opt for surgery, but not 100% sure.

I would like to share my results and see if anyone is/was in a similar situation and could share their experience:

A total of 7 or 8 (with second opinion) positive cores out of 14.
3 are low volume gleason 6, 1 high volume discontinuous gleason 6.
One high volume discontinuous 3+4 with only 5% pattern 4
One high volume 4+3 with 70% pattern 4
Two low volume (10%) Gleason 8
Negative mpMRI
Negative psma
Decipher 0.2, low risk

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

Profile picture for topf @topf

I am looking into doing a second opinion on my PSMA. I had my second biopsy opinion done by JHU, they found the PNI in the discontinuous 3+3 core. They also found much larger volume in thee of the. ores than the first opinion.

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Either a 2nd opinion on the PSMA PET scan or —>
Note that up to 15% of prostate cancers may be PSMA-negative (or PSMA-naive), and not express any (or much) PSMA, such that a PSMA PET scan won’t even see them - even though you know something is wrong due to the elevated PSA or biopsy results.
Ask your doctor about using an older type of PET scan (one that ordinarily PSMA PET is much better than - when there is PSMA expression), one that isn’t dependent on PSMA - like the older Axumin PET or FDG PET scans - which might be able to detect the location of the recurrence that is causing your Gleason? (Mayo Clinic often uses the older C11 Choline PET scan for this purpose.)

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Profile picture for brianjarvis @brianjarvis

Decipher is a biomarker (genomic) test that looks for mutated genes, proteins, and tumor markers that tell more about the prostate cancer. These tests include Decipher, Prolaris, OncotypeDX, and many more. Knowing this may help with treatment decisions.

Genetic (germline) test tells you which genes related to prostate cancer you have inherited from your parents. (Like BRCA1/2, ATM, CHEK2, HOXB13, MSH2, etc.) Knowing this may help with treatment decisions.

If the 8(4+4) cancers in your prostate don’t exhibit enough PSMA to light up a PSMA PET scan, then if there are other prostate cancers elsewhere, those also might not exhibit enough PSMA to light up a PSMA PET scan either. You would want to know this. This is certainly worth discussing with your medical team. (An 8(4+4) should’ve lit up the PSMA PET image like a Christmas tree.)

ADT+RT is so advanced these days that results are statistically equivalent to prostatectomy. The purpose of ADT is to lower testosterone to starve/weaken prostate cancer cells, making them even more susceptible to death due to radiation damage. With your 8(4+4), they would likely recommend 18-24 months of ADT. (I had 28 sessions of proton radiation + 6 months of ADT for my 7(4+3).)

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Thanks for your reply! I am not sure whT you mean here:

« If the 8(4+4) cancers in your prostate don’t exhibit enough PSMA to light up a PSMA PET scan, then if there are other prostate cancers elsewhere, those also might not exhibit enough PSMA to light up a PSMA PET scan either. «

My medical oncologist told me that there was uptake, but not strong enough to be distingushable from non-cancerous tissue. You say thst the 4+4 tissue is covered by other tissue?

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Profile picture for brianjarvis @brianjarvis

That’s interesting. With an 8(4+4), the PSMA PET scan should’ve at least picked that up. (There are other PET scan options if it doesn’t.) And there’s rarely PNI with 6(3+3).
Have you had independent second opinions on your MRI, biopsy, and PSMA? Much of the interpretation of images, scans, and slides is often as much an art as it is a science and dependent on the skill and experience of whoever is doing the reading. It’s good to have an independent set of eyes reviewing the image/scan/biopsy. If insurance will pay for an independent 2nd opinion, I would get it.

Jump to this post

I am looking into doing a second opinion on my PSMA. I had my second biopsy opinion done by JHU, they found the PNI in the discontinuous 3+3 core. They also found much larger volume in thee of the. ores than the first opinion.

REPLY
Profile picture for jeff Marchi @jeffmarc

With surgery, they frequently leave Cancer tissue, someone else was asking for about it in the last couple of days, when they had positive margins after surgery.

Many of us have had surgery and then days, weeks, months, years later needed salvage radiation to clean up the prostate area. For me, it was 3 1/2 years after surgery.

The biggest complaint about radiation is that they damage organs near the prostate, Using something Like MRI guided SBRT can avoid that.

With your case you can also consider HIFU , Cryoabalation , NanoKnife , TULSA PRO, HoLEP.

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Thank you. I think that the biggest concern with RT is that they leave viable cancer inside the prostate. My 4+4 involves both lobes, so not suitable for focal treatments.

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Profile picture for topf @topf

I accidentally hit the reply button.

What is germline? My decipher was 0.2.

The PSMA report said negative in prostate, but my oncologist said that it lit up just not enough to determine cancer. Not sure what to make of that, but it is a little concerning.

For treatment, my main concern with RT plus brachy boost plus ADT is the risk of viable cancer cells being left in the prostate. I am aware thst durgery carries a high risk of SRT.

Jump to this post

Decipher is a biomarker (genomic) test that looks for mutated genes, proteins, and tumor markers that tell more about the prostate cancer. These tests include Decipher, Prolaris, OncotypeDX, and many more. Knowing this may help with treatment decisions.

Genetic (germline) test tells you which genes related to prostate cancer you have inherited from your parents. (Like BRCA1/2, ATM, CHEK2, HOXB13, MSH2, etc.) Knowing this may help with treatment decisions.

If the 8(4+4) cancers in your prostate don’t exhibit enough PSMA to light up a PSMA PET scan, then if there are other prostate cancers elsewhere, those also might not exhibit enough PSMA to light up a PSMA PET scan either. You would want to know this. This is certainly worth discussing with your medical team. (An 8(4+4) should’ve lit up the PSMA PET image like a Christmas tree.)

ADT+RT is so advanced these days that results are statistically equivalent to prostatectomy. The purpose of ADT is to lower testosterone to starve/weaken prostate cancer cells, making them even more susceptible to death due to radiation damage. With your 8(4+4), they would likely recommend 18-24 months of ADT. (I had 28 sessions of proton radiation + 6 months of ADT for my 7(4+3).)

REPLY
Profile picture for topf @topf

Ismging was all negative. The overread noted some pni in a 3+3 core. Overall, I am 4+4.

Jump to this post

That’s interesting. With an 8(4+4), the PSMA PET scan should’ve at least picked that up. (There are other PET scan options if it doesn’t.) And there’s rarely PNI with 6(3+3).
Have you had independent second opinions on your MRI, biopsy, and PSMA? Much of the interpretation of images, scans, and slides is often as much an art as it is a science and dependent on the skill and experience of whoever is doing the reading. It’s good to have an independent set of eyes reviewing the image/scan/biopsy. If insurance will pay for an independent 2nd opinion, I would get it.

REPLY
Profile picture for topf @topf

Thanks for your and detailed reply! I am moving reluctsntly towards surgery. The risk of leaving viable cancer tissue in the prostate seemsvtoo big.

Jump to this post

With surgery, they frequently leave Cancer tissue, someone else was asking for about it in the last couple of days, when they had positive margins after surgery.

Many of us have had surgery and then days, weeks, months, years later needed salvage radiation to clean up the prostate area. For me, it was 3 1/2 years after surgery.

The biggest complaint about radiation is that they damage organs near the prostate, Using something Like MRI guided SBRT can avoid that.

With your case you can also consider HIFU , Cryoabalation , NanoKnife , TULSA PRO, HoLEP.

REPLY
Profile picture for kujhawk1978 @kujhawk1978

You have choices....

Surgery is certainly one of them...you could input your clinical data into MSKCC's nomogram to get additional information on probability (not certainty) of outcomes - https://www.mskcc.org/nomograms/prostate/pre_op

If you elect surgery, then experience is a factor. You should discuss with your medical team about nerve sparing but also guidance to them about what to do if once they start, they see PCa in the nerve bundles, what then, take them out, stop, close up, then do radiation, ADT...?

As others have said, surgery has likely a more definitive answer with the pathology report on the whole gland vice a biopsy. Still, even that is not certainty. My surgeon was "positive" based on my pathology report and his surgery notes that I wouldn't have any future issues, aka, cured...meanwhile MSKCC's nomogram said 30% chance I wasn't...history says who was right...!

There is no "right" answer from my experience...there are choices, each has its outcomes and side effects. I remember my radiologist having me acknowledge that SRT could cause ED ("frying the nerves"), it didn't. As I've said before on this forum, keep in mind statistics, Bell Curve, Standard Deviations, Averages, Means, Medians...In my case, likely my outcomes and side effects are several standard deviations to the left - I never lost my libido while on ADT, the day my nurse pulled out the catheter after surgery, no incontinence (and I didn't do Kegels!), not bragging but even while on ADT, I could achieve erections, now if my wife....

You can do radiation, I have a friend who elected to do that, PSA has dropped from 11 to 1.3 in the first six months.

You can also elect to do doublet or triplet therapy, though that's generally consider for metastatic PCa - https://www.mskcc.org/nomograms/prostate/pre_op. While the clinical data you present indicates localized, in higher risk situations, micro-metastatic PCa too small to be detected by even the more sensitive imaging today is a possibility.

You can look through the NCCN Guidelines for guidance and discussion with your medical team - https://www.nccn.org/guidelines/guidelines-detail

I was 57 when diagnosed in 2014, choices were binary, elected surgery, "successful," until it wasn't. Still, 11 years later here I am, living large.

I did not lose sexual or urinary function from my surgery though the former took around 12 months. Within three months life had returned to normal physically, I was going to the gym, playing basketball and pickleball, taking vacations, skiing with friends, Yes, sex will be different, dry orgasms, likely greater physical and mental stimulation required to achieve and sustain erections, my Penile Rehabilitation Therapy (PRT) was "simple," 5mg daily Cialis and use it (masturbation), Others have more complex PRT such as injections, implants. I think UCSF has one of the better programs (I attached it).

I think the only "right" answer in your situation given the clinical data is do something, do nothing is not a right choice.

Good luck in your decision.

Kevin

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Thanks for your and detailed reply! I am moving reluctsntly towards surgery. The risk of leaving viable cancer tissue in the prostate seemsvtoo big.

REPLY
Profile picture for brianjarvis @brianjarvis

With your Gleason 8, was that a 4+4, 3+5, or a 5+3?
Any cribriform pattern, PNI, SVI, ECE, or other concerns?
When you mention PSMA being negative, what does that mean - nothing seen even in the prostate?
What were your genetic (germline) test results?
What are the many factors you’re using in deciding on treatment type?

Jump to this post

I accidentally hit the reply button.

What is germline? My decipher was 0.2.

The PSMA report said negative in prostate, but my oncologist said that it lit up just not enough to determine cancer. Not sure what to make of that, but it is a little concerning.

For treatment, my main concern with RT plus brachy boost plus ADT is the risk of viable cancer cells being left in the prostate. I am aware thst durgery carries a high risk of SRT.

REPLY
Profile picture for brianjarvis @brianjarvis

With your Gleason 8, was that a 4+4, 3+5, or a 5+3?
Any cribriform pattern, PNI, SVI, ECE, or other concerns?
When you mention PSMA being negative, what does that mean - nothing seen even in the prostate?
What were your genetic (germline) test results?
What are the many factors you’re using in deciding on treatment type?

Jump to this post

Ismging was all negative. The overread noted some pni in a 3+3 core. Overall, I am 4+4.

REPLY
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