Hi all. I have never been able to get this question answered. My Gleason was 3+3 before having my prostate removed. It was confirmed 3+3 after surgery. One open margin of less than 1mm. No sign of spreading anywhere locally or distant.
My psa was in the .02-.03 range bouncing up and down for 8 years. Last visit 4 months ago it went to .05 which scared me.
My question is, if it is cancer cells that are growing, would they still be Gleason 6? If yes, would there be any risk to it since everything I read says Gleason 6 does not metastasize. I am 61 years old.
Thanks in advance.
Tom
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T_A - I saw no update on your referenced post dated *Saturday, November 18, 2017* -- are we to believe that more recent articles are incorrect when indicating that true 3+3 does not metastasize?
You mention "more recent articles" but are they actual studies like I referenced or are they just someone's uninformed opinions? You didn't provide any links.
I remember when I was first diagnosed I discovered and spent time on another prostate cancer forum. There was a thread there with about 300 replies with guys telling newcomers that 3+3 cannot metastasize nor can it turn into G4. I always questioned that because I never read it on a reputable source nor did I ever see a study indicating that to be the case. Thousands of guys are very fortunate to have you and Daryl here.
Actually, that reference contains the following: "(update July 2020) Salami et al. found that certain molecular "fingerprints" existed in the cancers that were GS6 and remained in their cancers after the patients progressed to higher grades."
Have you had/considered second opinions on the pathology and or a current mpMRI/PSMA and maybe a combo? I learned to not give this beast time and obscurity.
well, sharing, I learned six years ago, in Europe PSMA begins as soon as 0.03. At 0.13 I had six cancerous pelvic lymph nodes, including common iliac and left para-aortic removed by ePLND. Yep, well ahead of US guidelines but there is a small chance, and IMO, worth it, to be one of the fortunate few to get out ahead of this beast.
My Urologist at Hopkins said not to worry until PSA hit .03 after my RP. Fook that crap, I am not waiting around so talked to some of the best RO's in the Mid Atlantic area and they said don't wait to long, no one knows at what exact PSA reading / level does PCa start to metastasize. Once it does then your playing a different game.
A PSMA test when it finally shows the cancer spreading, hell it could have been moving for a while. These PSMA tests do not show the before or beginning, they show the afterwards...
IMO, if you had an RP and had a PSA bounce, then get another detailed PSA test. If the reading are back to what they were, very good. If not go see an RO ASAP.
At the PCRI mid year meeting last weekend, Dr. Kwon said patients should periodically measure PSA AND testosterone AND alkalinphosphatase AND get a PSMA PET scan. He said that in his lab’s experience 12-20% of metastases show no increase in PSA. He said bone metastases are sometimes only elucidated by measuring alkalinphosphatase. He also said that some liver metastases sometimes lie hidden and invisible to PSMA PET scans and can only be seen via pelvic CAT scan. So there is more than PSA to look at when wondering if there are metastases.
Makes sense and alkali phosphatase (ALP) blood test is part of the standard blood panel tests we get in the USA. But I would ask my Doc and other professionals about getting periodical PSMA Tests since they in themselves can cause harm with their Lutetium-177 or similar injections. BTW APL is normal at 39 - 156.
Mg urologist has always been overly cautious. When he saw it go from 0.03 to 0.05 he sent me to the radiologist for consultation. He said there is no rush as it’s been over 8 years since my surgery but if it goes up again he will recommend salvage radiation and wants me to be ready.
The radiologist scared the sh** out of me to be blunt. He told me that he recommends the salvage radiation but it will make no difference if I get it now or when it hits 0.2. The outcome will be the same. But he said “why wait”. Then he proceeded to tell me of all the risks to the radiation. The least being incontinence. Also bleeding and burning. But then he went on to say I will need yearly colonoscopies and bladder scans as the radiation can cause these types of cancers. Also it can cause many other type cancers. After thinking about his warnings, I felt that I am better if risking my 0.05 Gleason 6 PSA versus the other more serious cancers. He was not a reassuring doctor to say the least.
My personal assesment has been that the long term risk/benefit relation of sRT, finally, isn't rewarding. After such a belief, 2+ years ago, I set out to delay irradiation as long as possible. For the time, my N=1 experiment is working -for how long- it has to be seen. Detailed documentation of my doings in my thread entitled: "An engineer's Bicalutamide maneuvers".
Sorry, I am not the type to parrot studies. Over the years, I have run across a ton of them and my "distilled and settled" conclusion is that beyond any masking ADT period, 35-65% of those that underwent sRT will benefit 3-5 years of low PSA counts before the latter starts rising again. This is the benefit of sRT. 10-20% of those that had undertaken sRT, confront with risks materialization much later on, min. 3-5 years post sRT and are practically irreversible. They comprise a basket of incontinence, radiation cystitis/proctitis, blood weakening and ultimately second cancers. Not a walk in the park as many believe.
Thanks for your summary. Hopefully few believe it will be a "walk in the park"...at least with honest ROs as their Docs? I have found no "walk in the park" PCa treatments, other than do nothing!!
Question...why do you say " parrot studies " ...aren't studies what Docs use in advising on treatments?
Has your RO showed you studies/numbers on the risks of all those scary adverse consequences of SRT? I think TA has quite a bit of if study-based info....check out his blog.
I don't know how a man decides such things with no numbers to inform the decision.....none predict YOUR outcome, but they are still helpful IMHO.
Let us now what your further research finds.....and if brings into question what this RO has said, another visit with the results of YOUR research, and/or a 2nd opinion. You surely have more than a few days before action or no action will matter!!!
yes I was using labcor for the first 7 years and it was bouncing up and down from 0.020 to 0.029. Then he switched to Sonora and it came back 0.03 then 0.05 a year later. They only go 2 digits past the decimal and round off. I am doing some immune system boosting and planning on paying out of pocket for labcor at the 6 month mark from the last test just to see.
I am wondering why you chose RP with Gleason 6. From your previous comment I take it that you avoided the incontinence side effect anyway. I know that, like all of us, you were confronted with major decisions when you were least educated about prostate cancer. Just wondering if you were 'over-treated'.
Yes and no as far as if I was over treated. When I got the diagnosis my first thought was I’d be dead in a week. So part of my decision was “ panic”. I just wanted it gone. But there was another factor. My prostate was huge. And I was 53. My urologist told me about the seeds but did not recommend them for me. He said if I went that route, then my prostate could not be removed in the future. And since it was so enlarged at age 53, he said by the time I turned 60 I could be in big trouble. So removing it was my only option. Had I known them what I know now I am sure I would have tried other options but no use beating myself up over it. I feel like in his effort to spare nerves, he cut to close and allowed some cells to escape. So that’s a regret.
I kinda also regret posting my original question on here because it never really was answered and many of the posts have been pretty depressing. Gleason 6 does not spread like many say it does. It is not something that needs to be treated ASAP. It’s something you have time to think about with a clear head. I did not do that. Others that may be “new” to this, don’t get me wrong. It’s not to be ignored. But it’s not a death sentence. Just be smart and learn what you can before making a rash decision.
I don’t understand lettting the disease progress while deciding what to do. There will always be many more who will tell you the worst consequences and side effects of ANY given treatment than those who have done well. In fact they are usually those who have avoided them entirely.
This is especially true of radiation, the treatment that has made the most progress of all of them by far in this century.
If you have concerns and fears about a given treatment, you will have no problem finding people who advise against it.
Meanwhile those who’ve taken such and are in long remissions or cured, with little or no side effects, have sailed on. You are unlikely to read much from them in places like this.
Surgery, radiation, ADT, abiraterone, docetaxel. I’ve had all of them. Surgery is the only one I regret. “We got it all”, the surgeon’s credo.
He didn’t. Plus Incontinence, ED, shrinkage and some particularly adverse features post OP.
I was subsequently advised to act and I did. It has been 5 years and I am in peak health and on no drugs. I had considerably more advanced disease than you, but I chose a MO who did not believe in waiting for recurrence when he read my pathology report. I agreed, for I had already waited around too long prior to diagnosis.
Again no regrets whatsoever except the prostatectomy, which I could have well done without.
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