My gleason score is 5+5 =10. I watched Dr.Scholtz's talk who mentioned 5+5 case is rare and I happened to be one of them. My problems are like a full truck and wonder if that is the reason why my PSA remains above 7 after RP. Cancerous cell seems have spread to lymphnodes as i heard it prodcues PSA to make my PSA so high. It seems 5+5=10's prognosis is very gloomy. I am seeking anyone who has the same score to share your experience and advice. Is it indeed pesssimistic and how to cope with it? I started hormonal therapy without radiation three weeks ago. Since I am 80 and I hope I can at least have a little quality of life left with my limited days on earth. My PSA has dropped to 1.3, this week , still very high .. . I will appreciate hearing any advice and experience. . Is the kind of cancer with 5+5 gleason score that aggressive and spreading around through blood stream much quicker? Any help?
Gleason Score 5+5: My gleason score is... - Advanced Prostate...
Gleason Score 5+5
I know a patient who lived six years with a Gleason 10. He got hormone therapy and Lutetium 177 therapy, now called Pluvicto. He also radiated visible metastases with SBRT.
The quality of live will be affected by the hormone therapy, not much from Pluvicto or SBRT.
Formosan wrote -- " ... My gleason score is 5+5 =10. I watched Dr.Scholtz's talk who mentioned 5+5 case is rare and I happened to be one of them ... "
My research 8 years ago this month when I was diagnosed 5+5 revealed that only 5 men out of every 100 diagnosed WORLD WIDE with PCa are 5+5. Belonging to the exclusive 5% Club means I FINALLY made it to the TOP of the LADDER, only problem is that it's not the ladder I wanted to be on top of. 🤔 My chosen treatment was a first of it's kind - non FDA Approved - experiment that I agreed to try knowing that no statistics for survival existed so going that direction was a total crapshoot and having accepted decades before my PCa diagnosis that my DEATH is the ultimate end I can not evade I had no problem taking a chance.
It is now some 8 years post dx and at age of almost 73, I bicycled a total of 35 miles this morning with 80% of them at an effort that most 60yo's would find hard to maintain. I thank the OUT of the BOX THINKING of Dr. Gary Onik for offering his Immunotherapy Protocol that as of this moment seems to be working. Tomorrow is hopefully another day of living a life of QUALITY and I am totally comfortable that tomorrow is not guaranteed as is my wife of 50 years, IF we both live for another 3 weeks 5 days. 👍👍
That's my story and I'm sticking to it and my advice is to try to live your story as best as possible 'cause we all have the light eventually go out.
Did you do Dr. Onik’s treatment before or after becoming resistant to ADT? Did you also do extensive genetic testing prior to immune injection?
The injection was a 1st used for someone with my diagnosis - experimental pre-Immunotherapy protocol that he currently has in use.
Not so dyer a prognosis in todays world, it is no longer a quick death sentience. I am GL9 with aggressive cancer. See my profile for my journey. Glad to answer any questions you have.
PSA of 1.3 after 3 weeks is a good sign for you, if it drops to 0.01 you could be around for Your 90th Bday.
Scout4, a month has elapsed since your response to me. On May 30, my PSA is 0.05, not 0.01 as you indicated. So perhaps, I will not live up to 90...
My new question that I hope others will help me understand: my problem is the met to lymph nodes. I did not do a PSAMA so no idea of where the met goes. Some told me that even if I did, it wouldn't show all since my PSA is now 0.05.
My treatment is still the same, a Casodex tablet daily and Triptorelin 3.75 i njection monthly. I never saw anyone mentioning this Triptorelin ( Diphereline ) in this net. I know it is the first generation drug for PCa. Now the cancer cells freely travel in my body through blood stream, anything I should take heed of ? Any advice ? Any food should I avoid? can I eat egg and bakery, rice....? Thank you.
In my evolutionary treatment book 0.05 is a good value for PSA reporting to the second decimal place. The logic behind this is if all hormone sensitive cells get killed their non sensitive counterparts will have more room to proliferate to the state of castrate resistance. So, the number is not the important factor but the stability of it is. And for a 2 decimal places reporting scheme 0.04 to 0.05 is more than 20% the purported precision of PSA analysis. Most people here are attracted by a low, as it can get, mumber and go around bragging about it. I am not. They falsely hope that they may have reached a state of "cure", or a least of a long lasting remission. I do NOT. I see it as opening the castle gates for the villains to assult. As to the PSMA nonsense you can find silly-misinformed docs all over the globe. There is currently a poster that was told the same by 2 docs but nevertheless insisted and got scanned. There was a host of detections brought to surface. Find it an read it.
I am not a doctor so any advice I would give is just opinion and no more.
re: Any food should I avoid? can I eat egg and bakery, rice....?
In the beginning I tried to follow a strict plant based diet , the science does not support diet as something that will stop the progression of PCa. None the less I try to eat a healthy diet with very little red meat or dairy.
Over all I would be happy with a 0.05 PSA as it is going in the right direction. Get busy enjoying what time you have left on the planet
I don't know all your details. This nomogram is based on a good database and should help give you a better idea of result s for men similar to you......this would be the "prediction" after you had biopsy and BEFORE RP...........
mskcc.org/nomograms/prostat...
This is based on your pathology post RP........
mskcc.org/nomograms/prostat...
And this would give you some idea should you decide on salvage radiation.......
mskcc.org/nomograms/prostat...
finally " This nomogram can be used by patients to estimate the risk of dying of prostate cancer if their cancer recurs, signaled by a rising PSA, after radical prostatectomy. The nomogram predicts the likelihood, in a man initially treated with surgery, that he will die of prostate cancer five, ten, and 15 years from the time his PSA begins to rise. " ..........
mskcc.org/nomograms/prostat...
all these nomograms can be found at.....
at 80, with all the other risks that age brings, your PCa is not a death sentence IMO.
PCa treatments can certainly be Catch-22 re QOL...and especially when diagnosed at 75+ IMO.
It seems in the same vid or esleswhere Dr. Scholz indicate that if your PSA does down 90% (roughly) in the first month with ADT, you are responding well. That said you might want to consider triplet just to be sure. At the age of 80, or somewhere close you might want to consider addition of cardiologist to you team. The reason is that it is a known side effect of the medication. Other than that, exercise and have healthy diet?
Dont mind me. I am just a layman.
I understand that once your cancer has spread from the prostate, your Gleason score is somewhat irrelevant. I was diagnosed Gleason 9 at 48 years old. I'm still here 3 years later and lead a somewhat active life even with bone metastases. Hang on in there. Have you been offered enzalutamide? My cancer was aggressive but even so, the drugs have contained it. This is by no means a death sentence. Sending healing vibes!
London cyclist. I am not on enzulatamide but on triptorelin.. I was heard that enzo..is a,second generation drug and my insurance does not cover it. I thought I should have something more besides triptorelin monthly injection and casodex daily.i wonder if psma will find where the cancerous cells spread in my body with a psa of 0.05.
I was diagnosed as 5+5 and oligometastatic almost 6 years ago with a PSA 5.4. Currently undetectable and planning to live a long time.
My husbands Gleason at 73yrs old was also 10 and indeed gloomy and continued to be even after treatments until Memorial Sloan Kettering Dr Morris repeated biopsy and found he was high MSH2 which prompted 2 doses of keytruda that put him into undetectable PSA and there he has stayed 4 yrs next month, he's now 77 and left at 6am this morning to go fishing. So everyone is different, there is always hope even Dr Morris predicted he wouldn't make it to 80 and now predictions are left to an even higher power. So don't despair.
This " Healthunlocked" has done a great service to people like me who is lost in the jungle of prostate cancer. In fact, I also suffer from thyroid cancer since 2012 that spread to my lymphnodes as well. It seems my lymphatic system is weak and vulnerable. With two cancers attacking me I am indeed scared but the responses from all of you give me a light to look forward. Perhaps I am not in the dark tunel. Your stroy, experience and sharing uplift me a great deal to which I am very grateful.
I try to figure out why my PSA was at 11 ( originaly about 30 before surgery) three weeks after the RP. Anyone like me ? I thought perhpas it was becauase of 5+5 Gleason scores or perhaps the met to lymph node ( one was found cancerous among ten that were removed at the operation). I just wonder why I am so ill-fated as I never found anyone like me whose PSA remained so high after surgery.
Re; lymphnode spread, I wonder if I go through PSMA (my hopsital where I see doctor does not offer that), can I find out how wide spread to the LN, but, what treatment I can have? I live in a country where cannot offer all kinds of treatments like in the USA or UK....
How effective will the ADT which I am having will stop the agression of the 5+5 cancer? I know it will not cure me but at least it will me more time.
PSA of 1.3 in your situation is not very high. It is actually good. I suggest monthly tests and you should see a decrease. Gleason means nothing after mets.
I was diagnosed in 2019. Details of treatment in my profile. In brief long term ADT with both lupron and abirateron/steroid, 6 cyles of docetaxel, followed by pelvic IMRT. Alot depends on your comorbidities and what you can tolerate physiologically.
Also a 5%er... did the SOC (ADT/Radiation/ADT) for G10, finished almost 3 years ago, and PSA has been hanging around 0.2 ever since (+/- 0.03). That was at 72, now (next month) 77, and no sign of fading away yet. You'll get more comfortable with G10 after a while.. give it time.
About those MSK nomograms - men seem to sometimes treat them as gospel and they're not - they're often irrelevant because (1) they're old (2) they're based on even older data (3) that older data was gathered from men who had treatment 15-20 years ago. PSA treatments have advanced GREATLY since those nomograms were relevant... There is NO nomogram there for radiation (of any type) being used as a primary treatment - and that's standard of care treatment.
The only nomogram that was useful when I first looked at them 4 years ago, was the expected male lifespan. Since COVID, even that one is woefully out of date. Keep that in mind as you fret over the graphs and whatever there.
Good luck to you! I hope your treatment is as successful as many G10 men have reported here.
my husband's Gleason score was 5+4 with extensive bone metastasis. Zyiga and then Xtandi both with ADT did not help him. Neither did chemo. He the had radium 223 which also did nothing. The end was when his platelets dropped below 2.
So sorry to hear this. It is a reminder that we face a serious and somewhat unpredictable foe.
I told you before............... you'll hit 90 standing on your head................
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 05/08/2023 7:31 PM DST
am GL 9...and also gloomy prognosis and genomic confirmation of aggressive cancer....but things have gone well so far (sound of knocking on wood)...4 years later...my last PSA was still undetectable post treatments. (started ADT in October 2020 and have been undetectable since...now I am more than a year post ADT). Bon courage!
I had same scenario as discussed by Vindog29. However, I stayed on Keytruda for two years while simultaneously on Lupron. PSA undetectable after two treatments of Keytruda and stayed that way for the next 22 months of treatment. Stopped treatment of Keytruda and Lupron after approximately two years and have been undetectable for an additional 15 months. Genomic test near end of treatment showed no mutations so was declared "in remission". Still that way now.
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