Rising PSA years after radical prostatectomy
I am 60 years and I had radical prostatectomy on 23rd Nov 2018. I was told out of the 15 lymph nodes taken only one was affected less than a millimetre. It was Gleason score 7B with PSA around 13 at time of surgery but 11 at time of diagnosis in June 2018.
The PSA been fluctuating between 0.09 and 0.18 since surgery on 23rd November 2018
I have no incontinence as well as Erectile dysfunction. I take hypertension medication – Norvask Amlodipine 5mg daily and Cetirizine 5mg for allergy. Below are some of the test results. I have many of these test results – a few below
Jan 2019: 0.11
April 2019: 0.11
June 2019: 0.09
August 2019: 0.12
December 2019: 0.12
April 2020: 0.12
August 2020: 0.11
October 2020: 0.17
December 2020: 0.15
February 2021: 0.18
I am worried the cancer may be returning or might have spread. I met my doctor today and expressed my concerns. He has agreed to refer me to the hospital where I had the surgery. Any suggestions based on this brief history?
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
The stuff I've read is that you're not in that bad of a shape.
That it's gone to your bone isn't good of course.
But that there isn't a lof it, is very good.
Apparently your Docs think it's still something they can treat with localized SBRT like radiation therapy.
My guess is if they thought otherwise they'd already be loading you up with ADT ARPIS and PARPIS.
"It's always the darkest before the dawn."
My heart goes out to out to you , in this day and age no one should be going thru what you described, I get in the dark hole often dealing with radiation and hormone therapy since the surgery didn’t get all my cancer . Not sure how I would handle a situation like yours, keep your friends close by and hope your nightmare is finally over
Hey Bud, First of all, I totally get how you must feel. Like, how many freakin times do I have to deal with this thing? It’s like the Terminator - just keeps comin back…
The good news is that there are many protocols now and quite a few guys on the forum are sure to weigh in with their experiences.
The bad news is that you will have to deal with this - as you’ve probably known already - for the rest of your life. It sucks, but that’s what we have to do, right?
I just had my second bite of this sour apple and the thought of having a third (like you) is always in the back of my mind. It’s just a total drag, to say the least.
Can’t comment on any special diet plan because I don’t ascribe to any of them; common sense stuff like go easy on the booze, eat a balanced diet and get regular exercise is the best I can offer. I know you will be bombarded with advice on supplements, foods to eat/avoid and all the rest, but I kinda doubt any of that is going to be a factor with something this persistent (if only!!).
Perhaps genetic testing might be your best bet going forward so the docs can see what drug combos might be most effective against what you are up against. Best
Phil
My first time on the chat line, I had prostate removed 2021, PSA went up to .5 and then went thru 2-months of radiation then 1 1/2 years of the shot starting in 2022 and PSA went down to .02 and was clear. Now in 2025 it's come back in my upper spine (size of a quarter) PSA is back to .5. Starting out with targeted radiation which they think will clear up but if not then either shot and/or pills.
Starting to go down those dark rabbit holes of depression but exercising and seeing therapist along with getting back to support groups and diets.
Any suggestions of building on my action plan? Thanks!
sure Scott, you don't have to take the hormone blocker. Six months is bearable, but you'll have undesired effects. I'd press for orgovyx instead of an injection. It is said to be more effective with dual effect and said to be easier to recover from--faster return of testosterone. Orgovyx can make radiation more effective because it disturbs the dna of the tumor in addition to stopping the testosterone feed. If this appears to be simple biological recurrence, and you've had prior somatic testing those test results would let you know how helpful or how susceptible this cancer is to antiandrogen therapy.
It sounds like you are getting excellent care.
bless your choice
@scotth22, what did the PET scan reveal? Will you be starting treatment with radiation and hormone blocker (ADT) soon?
This is really good data - thanks ! Great job ! 🙂 I read article for information too . Thanks . James !
My Salvage Radiation treatment was IMRT at Johns Hopkins; 37 txs; total 66.6 gy to whole pelvic region and pelvic lymph nodes.
Also had 4 mos ADT Orgovyx.
See SPPORT trial.
Note: A friend who had RP (3 or 5 yrs ago) now has rising PSA around .2 and is scheduled for Salvage Radiation at a MD Anderson affiliated location in NJ; however ADT is not being prescribed.
I am not a MD and have no opinion on the "ADT or no ADT " treatment, but wanted to report my friend's experience for informational purposes to you.
My PCa was a Gleason 9, so I am probably grateful that I had ADT, and worry that it should have been a longer course of ADT. However I certainly found the ADT to be a burden. Ok, ADT sucks; if necessary, then so be it.
Best wishes.
Sorry, treatment was done at Sloan Kettering in Commack, NY.
Hey Jackie, sounds like you have a plan - a good one. I think the docs are right in that PSA doesn’t just stall out; but mine took quite some time (5yrs) to hit the magic .2 and even then it bounced up and down for the last year until finally hitting .18.
I had IGRT radiation, since every day at treatment the machine would do a cone beam scan of my insides to check for gas, stool in the rectum, bladder fullness and relative position of all the organs to each other. Only once in 25 sessions was I kicked off the table for too much gas in the rectum, which is a very critical area.
Still amazed at the technology, even though we always use terms like fried, zapped, cooked, etc to describe what was done. My RO explained that they can actually “shape” the beam to go around the rectum but not thru it; the machine - a Varian TruBeam- actually goes underneath you and radiates you from the back as well….really amazing technology.