Gleason 8 diagnosis at 51: Likely opting for surgery
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.
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).)
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.
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.
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?
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.)
Prostate cancers are very heterogeneous. Just like you can have prostate cancers, one a Gleason 6, one a Gleason 7, and another a Gleason 8, similarly one cancer might express a lot of PSMA, one a little, and another none at all. It’s very heterogeneous,
Normally (but not always) the more aggressive the prostate cancer, the more PSMA expression it has (measured by its SUVmax score). Your Gleason 8 should’ve (but, not always) expressed a lot of PSMA.
Your medical oncologist indicated there was uptake; what was the SUVmax score they assigned to that uptake?
The background, non-cancerous tissues they compare to are the blood, liver, and parotid (salivary) glands that express low, medium, and high levels of PSMA, respectively, without being cancerous . They assign SUVmax values to those (which should be indicated in your PSMA PET scan report); then they compare those scores to the SUVmax scores they’ve assigned to any cancerous lesions that “light up.”
Thanks for describing your case - would you be so kind to tell me how long ago you had Proton therapy and what were side effects (if any). We do not have proton therapy in our area so I am wondering would it be feasible to endure therapy away from home and travel. Also, what was extent of your PC (gleason , localized or not , etc. ) . Thanks so much in advance.
Thanks for the clarification. The average SUV in the liver was 4.6. There is no other mention.
About the prostste itself it says:
« No focal abnormal uptake within the prostate. »
I was told, though I amnot sure if I understood this correctly, that the PSMA would also have value as a standard PET CT if there is no PSMA take-up.
If the lack of PSMA uptake would indicate a less-aggressive cancer that would be good news, I guess.
I had my proton radiation treatments during April-May 2021 (with 6 months of Eligard and SpaceOAR Vue injected).
> Side-effects from the proton radiation —> I only had 1 day of adverse side-effects during my 28 sessions of proton beam radiation treatments. On the 3rd day of treatment, I had urinary issues. My RO told me that with some men there’s an inflammatory response to the radiation, and if that inflammation is near the urethra can cause the issues that I was experiencing. He recommended that I take 2 Tamsulosin/day for the remainder of the treatments. Everything cleared up by the next day; I haven’t had any issues since. My “recovery” from radiation treatments was uneventful. (My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me. The short amount of time that I was gone each day for treatment were no different than any other time when I simply left to go shopping or to the gym.)
> There are currently 46 operating proton centers in the U.S.: https://www.proton-therapy.org/map/
> If you have to travel for treatments, Hope Lodge communities across the country provide a free place to stay during treatment so people with cancer can focus on getting better. —> https://amp.cancer.org/support-programs-and-services/patient-lodging/hope-lodge.html
> At treatment, I had PSA of 7.976, localized, Gleason 7(4+3).
Prior to the three current PSMA PET scans (tradenames Illuccix, PYLARIFY, and Posluma), there were a number of PET scans that didn’t rely on PSMA. Some are still backups in case PSMA doesn’t work:
> F18-Fluciclovine —> Axumin® is the go-to these days other than PSMA. (Insurance still covers it.) Axumin doesn’t rely on PSMA. Axumin works by exploiting the fact that prostate cancers absorb amino acids at a much more rapid pace than normal cells. Axumin is made up of a radioactive tracer linked to an amino acid. Cancer cells absorb the amino acids more avidly than normal cells, so when Axumin is used, the radioactive tracer concentrates inside the tumor cells. When the patient is imaged, the areas that have a high concentration of the imaging agent signal the location of the cancer in the patient’s body.
> Choline C11–> works well for detecting prostate cancer; not sure who besides Mayo used it.
> F18-FDG —> Didn’t work so well for detecting prostate cancer (unless the cancer was very advanced); but, it did great for detecting lung and brain cancers which are more avid for sugar (glucose).
> F18-NaF —> worked well for detecting prostate cancer, but not sure if insurance still covers it.
You might consider asking your medical team what scan they use as backup if PSMA doesn’t see any known cancers.