Good morning . I have been a member since 2020 , but I read more than I write. However, I would like some feedback on my situation. First a review: I had requested a PSA test from my GP for several years. His response after a non remarkable DRE was that PSA tests were useful if he felt any abnormalities. I had a slow stream at times but not unlike many men in their late 50's or early 60's would have. Finally when I turned 64 I demanded a PSA test and it came back with a score of 40. After being referred to a urologist I had a TRUS biopsy which revealed 50% of the cores positive with a grade group 4 and PNI. A second opinion from Johns Hopkins revealed that I actuallly had a gleason 6 not 8. I decided to take my urologist's advice and under go external beam radiation and ADT (LUPRON) . My radio oncologist as well as my urologist claimed I had a curable cancer since my AXIUM PET SCAN showed no mets. Then during the appointment where I received my last LUPRON shot, I asked my urologist about recurrence and he told me he was more confident I would have a recurrence than not. My question is : what changed with the opinion that I had a probable chance for a cure? Did I hang one to those word more than I should have. I have finished my ADT as of October of this year and I am now nervous of the future.
End of treatment and worried - Advanced Prostate...
End of treatment and worried
How has your PSA done through the process and currently?
My PSA has been <.01 for 18 month. I get it checked on January7. About 6 months after my last LUPRON shot which was a 3 month version
I think your urologist thinks you have a gleason 8 and not six. With a gleason 8 a recurrence is likely. However, if you have a gleason 6 and radiation and ADT you should now have a long time without requiring further treatment.
thank you GP24. My urologist and his pathologist agreed on John’s Hopkins down grade of my Gleason score. But my urologist’s comment was “ that PSA is coming from somewhere - you still have a high risk cancer”
After radiation your PSA value has to get above 2.0 for a recurrence. So now you have to wait until your PSA creeps up from 0.01 to 2.0. I think this will take a long, long time.
You never had “High Risk Cancer” to begin with. Secondly, your PSA is essentially undetectable so they report it as < 0.01 and the negative Axumin scan all bode well for you.
Don’t let your guard down by thinking your cured as i did and got surprised with a recurrence 18 months after finishing EBRT.
Also you never mentioned a PCa Oncologist. Your beyond the urologist expertise now unless he is also an oncologist. You need an Oncologist.
None of them have a crystal ball. Cure rates are over 90%. The radiation oncologist might know that but the urologist would not.
Thank you to all of you. You guys made me feel slot better about the next chapter in my Pc book. I am beginning to realize that there are . no sure things in this battle. Staying positive and keep trying to stack things in my favor is key. I pray all of you have the best of holidays. As for me I am going to breathe easier the fresh Virginia air.
I would investigate “eat to beat disease” type of diet. We are high gleason and changed our diet to booze free, organic and plant based. The junk we put in feeds cancer cells imho. We are “no evidence of disease” and although not “cured” we are fit and feeling fabulous at 77 years young. Happy Christmas from Phuket.🌲⭐️
Happy Christmas to you. I have similar diet but a bit more meat. So far no wine even though my doctor allows me occasional steak and glass of red wine!.
In Australia our GP’s do very little study in their medical degree courses, on nutrition and disease prevention. My niece is a nutrionist and “the proof is in the pudding.”😜
The medicos here rely on drugs and treatment and not prevention. Sadly it is up to us to be our own advocate. Enjoy your time on this amazing planet.⭐️🌲
You need to consider yourself on "intermittent" ADT. Check PSA regularly, and if recurrence occurs, (over 2.0) repeat ADT. Cancer doesn't get cured, it grows.
Guitarwolf, wow...I am speechless about the 1st part of your treatment; astonishing that your GP would not give you a PSA test with every DRE that was performed...but that was then...you have received RT with a GS tumor...here is an article that states you have zero (0%) chance of dying from PCa without some pattern 4+5 GS present...that would be some consolation.
healthunlocked.com/active-s...
But check out this site for additional testing that you can ask for to zero in on your disease...I would not take 'no' for answer and if your insurance will pay for it, go for it and if not ask what it costs and pay for it...we b#tch up a storm sometimes about a $2500 test which is not covered, then choose not to take the test and on the way home form the doctors appointment stop at an Apple store to buy the latest iPhone 14 PRO for $1500, or take a vacation that costs a lot more...so see what tests are there and if you can try to get them taken...these can really help diagnose your specific disease and tailor a treatment that fits your condition. TNX Rick
Your GP failed you regardless if you have reoccurrence or not. Find a new knowledgeable GP who listens to you. Get away from this current one. I might suggest a women doctor, women are better listeners than men.
I have not been back to that doctor since getting the result of that first PSA test. I even considered suing him. At the time though, I had too many other things to concentrate on. A lawyer had told me that medical malpractice suits were very hard to win and since I was reacting well to treatment it probably would not be a profitable case for a law firm. My new GP is great and tuned in to my cancer and my urologist and radiation oncologist
I just completed such a suit, settlement resulted, second worse experience of my life after cancer. Two things achieved, Doctor is no longer practicing and I got compensated, It was an ordeal. Yes your result was much better than my primary treatment, so you haven't shown enough harm at this point for a suit.
Please stop worrying. Worry robs you of energy and serves no purpose. Seek data and act on it. I know this is easier said then done. You can never turn your back on PC. Get a good MO and get a PSA test often enough to trend data. Live your life to the fullest. Merry Christmas!
You gave absolutely nothing to worry about my friend. Thank the powers that be.
I would include a MO and consider a new Uro.
Hello to all. I thought I would drop in and give an update. I had my follow up in January and my PSA was still undetectable st <.01. urologist is happy and I am relieved about the progress. I am beginning to wonder if my sexual function is going to back My libido is coming back but my erection - not so much . I had my final LUPRON shot (3momth). Last July.Any comments not enough time for full recovery?
Just like everything with PC we are all different. I am younger than you and my libido and sexual function and T returned in about 3 months after last Lupron shot.
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