I am worried about recurrence 16 years after RRP.
I had RRP in 2008 at Johns Hopkins by Dr. Partin. I was 42. My post-op was Gleason 6 totally contained with no adverse pathological features. All PSA have been < 0.03 This year my Dr. switched to Quest labs and my PSA came back at .04 I had a life insurance physical 8 years ago and they sent my blood work to Quest and I got the same reading. Quest has a history of not reporting the "Total, PSA" test as < 0.04 So, being paranoid as I am I went to LabCorp and got an ultra sensitive PSA. 1st one I have ever had and it came back as .021 I had Johns Hopkins pull my prostectomy slides and re-read them and they said I am still Gleason 6 or GG1 organ confined by today's standards and total confined to prostate. I am now in freak out mode because LabCorp test should be < .006 for undectectable. I was told by JH that GG1 has a 4/10% of recurrence and they don't believe reading below .03 are accurate.....yet LabCorp does it all the time....so I have BCR with a cancer that by today's grading does not have the ability to spread, yet it has in my opinion.
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Guys, I know I am in a very lucky position with my post-op....however, I had RRP at 43 years old....so I have a long way to go with this. All studies go out 20 years and stop, since this cancer is usually found at a medium age of 65. Not many men live beyond 25 year after that, so you wonder if G6 simply just takes a longer time to be more lethal. All the talk about not treating is a good argument for a 65 year old, but nobody thinks about the small amount of people like me treated so young when they argue not to treat. I am now 59....
The logic in my head is "I had organ confined OC G6, there should be no PSA with a Gleason score that supposedly can't metastasize." Switching labs has nothing to do with it. If you don't have any PSA in your blood no matter the lab the reading should be below the labs limit. I had RRP by what I thought would be one of the best surgeon's in the world, Dr. Partin, so that there would be no risk of any tissue left behind and I would not have this issue to worry about.
Many providers consider < .1 with ultrasensitive that stays there non detectible. With that said I would love to have your number post RP. I would suggest taking a deep breath and see what your next 6 month numbers are before hitting the freakout button. If the same go forth and live your fullest life. Both of your tests indicate no recurrence.
There is always a risk no matter how good they are. Relax, your numbers are great. Look for 6 month doubles before freaking out. .2 is the magic action number and you are a long way from there.
Just to add to what I and others have said, surgery guarantees nothing. The best surgeon in the world using the best surgical robots and cameras cannot know if ONE CELL got out of the gland during removal.
But I am NOT saying what is what happened in your case, simply stating a fact. Do you know if Dr Partin removed your Cowpers glands? Many surgeons do not and with your low Gleason score he may have felt it was not necessary.
Cowpers glands produce low levels of PSA so that could be what you are seeing all along. If there is a way to find out , I suggest doing so; surgical notes could still be available.
The irony in all this is that you have been laser focused for the last 16 yrs on your PSA because you had prostate cancer. What cancer markers, blood tests and scans have you NOT had?
You may think you’ve covered all your bases with cholesterol, hypertension, colonoscopies, etc., but there are probably many preventative tests you haven’t had, right?
Case in point: My good friend, an optometrist, last year discovered optic melanoma during a routine eye exam for a patient wanting contact lenses. This is rare and deadly!
Sloan saved not only his eye, but his life, before the cancer could spread. But it could come back and like every other cancer patient - you included - he will be monitored til the day he dies.
So you are no different, you get no passes or guarantees; you simply monitor, feel that sense of dread we all feel every time we get tested, and move on. Yes, you had cancer at a young age, yes you have a right to be concerned about long term outcomes. But NO, there’s no freaking out allowed because whatever you have (or don’t have) can be treated easily, effectively and give you many, many more years of life.
You know the old expression, “Don’t sweat the small stuff”? This is one of those times…