Connect
Three Years Post SBRT
Hello just wanted to introduce myself
I am in Manhattan and had SBRT for mostly G6 with one core of 8 upgraded at second opinion to G7
Suffered a lot over the years. has retention early on during regular radiation which caused a paraphimosis which was hellish! Switched to SBRT after a year I got a stricture which almost closed but balloon dilation two years ago seemed to have worked. Pain on voiding and often hematuria but good news is PSA down from 3.5 to 0.69
so yep doing well! I would add that I never gave up testosterone replacement. Oncologist and primary plus urologist were against but I found a way to get it and I am happy because my T level gets into the teens and I feel awful
Glen
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
If you had one 8 then you are a Gleason 8. That is high risk. Testosterone would feed your cancer so you should get monthly PSA tests while on it so you can see what’s going on. You need to tell your doctor you are taking testosterone so they can get the monthly test set up.
You might want to get a PSMA PET test to see if your cancer has spread and is causing your voiding issues.
I believe he was saying that one core of eight had PC, originally G6 then upgraded to G7.
-
Like -
Helpful -
Hug
1 ReactionI sent the slides to John's Hopkins for another opinion. They agreed except for one core seemed to them to be a G7 I do not remember which number core it was.
This process of deciding is not exact science because two viewers can see it differently.
In the end I decided that because the volume of positive cores had increased that it was time for treatment.
Glen
Yes a doctor at John's Hopkins where I sent for a second opinion graded one core as G7 but the other of the 8 core were G6 so I started treatment.
No way was I going off TRT I just cannot live with my extremely low testosterone. I was on opiate medication for years and it ruined my natural production. My T gets as low as the teens!
I also did not feel I was rolling the dice. I searched and researched and found that many doctors still prescribe T to cancer patients. The nearest was in Boston a Dr Morgenthaler but I could not see taking such a long trip.
I did find a clinic and have been on TRT throughout
3 years since radiation PSA .096
Glen
I am done with treatment over 3 years now. Only one core was upgraded to G7 the rest were G6
My current PSA is .069 which is down from each year post radiation. SBRT is radiation but given in less sessions then regular radiation with a higher dose.
I never had symptoms before treatment except a enlarged prostate but after a year I got a stricture which is a not uncommon effect.
The stricture was taken care of by balloon dilation for over a year (March 17th 2023)
I still have blood in my urine now and again plus a little pain when I void.
so yep I am doing quite well.
Glen
I did miss read your explanation the first time. Sounds like you’re doing well. That PSA should probably continue to drop over the years. If it does rise three times that’s when you need to do something.
-
Like -
Helpful -
Hug
1 ReactionYes thank you.
I still suffer symptoms of the radiation but hope in time they will get better.
I just voided and almost did'nt make it to the bathroom plus it was bloody at first.
The cause is know or at least suspected to be related to the stricture which was caused my radiation.
I am used to seeing hematuria so i am not alarmed until I see clots again-that would suggest the stricture is closing up again. If so instead of balloon dilation, I will have Optilume treatment.
Glen
-
Like -
Helpful -
Hug
2 Reactions