Rising PSA immediately following RP
Anyone here experience rising PSA on first test after RP? I am 57 years old. I was diagnosed in April with PSA of 35. PMSA Pet and MRI were clear. Biopsy Gleason 8. RP in June. Clear margins, cancer contained to prostrate. Raised to Gleason 9. PSA last month was .17 at 8 weeks. Followup PSA last week is 1.5. I was hopeful surgery was successful or would at minimum give me a number of years without treatment. I have PMSA scheduled next week and a consult next month. I feel defeated. Am I going to be actively battling this the rest of my life? I am just starting to feel like myself after surgery and now will likely have to start another treatment. Anyone else go through something similar? Did the subsequent treatment work and give you some quality of life time without being in active treatment? I imagine I’m looking at hormone therapy and radiation.
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This is exactly what I went through (although my numbers were a little lower). Unfortunately it's apparently not that uncommon.
Fist couple PSA's showed decline and the 6 mos showed an uptick, marched me right to the RO's office. It's a bit of a kick in the teeth for sure. The surgery was about 2 years ago now and the radiation completed about 14 mos ago. There is light at the end of the tunnel. On Orgovyx for another 10 mos.
As the radiation treatments went on, my only side effect for the most part was fatigue at the end of treatment, maybe last 10 and a couple weeks beyond. I went to the gym and ran every day after treatment. I scheduled an early treatment time, packed breakfast which I ate in my vehicle after then straight to the gym. I firmly believe you have to sort of fight through it and not give into it if you're otherwise healthy.
My experience was this, while waiting for, and during, the radiation you'll continue to heal from your operation. That healing process seems to continue for a LONG time, or maybe I'm just getting used to the new me? This example may seem odd, but it's the most recent...But, at about the 1 year mark, I bought a motorcycle, did a little touring. I leaked a little and had to stop almost ever hour to relive myself and because I was uncomfortable sitting that long. I just got back (last night) from a two day trip with 15 hours in the saddle only stopping when I needed fuel (about every 2.5 hours). Felt great. So, there was some improvement even in the 12-24 month time frame. Be patient.
I realize how daunting the upcoming treatments seem, but take my word for it, they'll be "ringing the bell" (last day of treatment) before you know it. Try to be Positive!
Again, 2 years from surgery, 14 mos from radiation, still on ADT. The healing process is a bit slow. It's a new normal for sure, but, I enjoy all the activities I enjoyed before the mess started with the exception of the sexual ability is somewhere between really different and non existent, (so be creative!) I'm hoping that improves a little more after the ADT is over. We'll see!
Best of luck to you!!
I've been through quite a bit since having my prostate removed in 2008. After 11 years it came back in the old prostate bed. I've had 36 radiation treatments while on hormones and worked outside 5 days in a row. I was very fatigued by Friday afternoon. It took me all weekend to recover for a Monday start over. Now 3 years since the radiation my numbers are once again coming up. I've had 3 PET/CT scans and they have all been clear. I'm not willing to treat just the numbers. I want to know where the cancer is and then I can make a decision about treatment. I'm 79 years old and in otherwise good health and a active lifestyle.
My advice to you would be to develop a attitude that it is what it is. All you and your team can do is make educated decisions about treatment or not. Your worries about this and that will not fix anything and will possibly do you harm. Get out and live a great life and take this stuff by the horns and wrestle it down. Be happy and good luck. There's lots of people with a lot more problems than you have!
I know it is what it is. Im just trying to wrap my head around the fact that I am already dealing with round 2. I’m happy you got 11 years after removal. I’m more curious about others similar to myself that had little to no time between removal and needing adjunct therapy and hoping there may be a prolonged period of time that I won’t be in some sort of active treatment.
Thank you! This is really helpful. I just need some hope that I also can do some activities that I enjoy and not feel unwell or tied down to actually be treatment.
Here's my clinical history...
When I met with my surgeon to go over the pathology report from my surgery he said, "Kevin, this is an excellent pathology report, T2CNoMx, margins, ECE, SV negative, 10% involvement and GS downgraded from 4+5 to 4+4...and combined with my surgery observations, you should not have any problems in the future."
Hmm, I looked at the Mx and thought, I don't like that they don't know if there is any metastasized disease. Keep in mind the state of imaging in 2014, MRT and CT.
I knew based on MSKCC nomogram with that clinical data, especially the GS, statistically I had a 30% chance of BCR. Wouldn't you know, 15 months later he looks at his computer screen to see my PSA results and hesitates before turning to me...yep, pity party #2 began.
I won't say that with each recurrence, I haven't had my pity party, albeit briefly. Then, I pick myself up off the floor and deal with it.
Almost 9-1/2 years later...nine holidays with my family, vacations aplenty, daughters graduating from college and going out in their worlds and being successful, many bike rides, pickleball and skiing with friends...you get the idea. ALong the way, I have fired various members of my medical team who failed to match my outcomes, long life and who recommended only the SOC.
So, you are entitled to your pity party but briefly. If your furfure holds treatment, so be it. I expect at 57, you have a lot of living to do. There is the possibility of a "cure" with initial BCR, if not, your advanced PCa may be a chronic disease that you live with and manage.
Kevin
Bob65:
Hang in there Buddy! It's a setback, and yes, I was hoping for a clear period of time postop.
RP Aug 2022 at Johns Hopkins (JH).
Clean margins, lymph nodes and seminal vesicules.
However, G 9, together with EPE (extraprostetic extension) foretold BCR @ 1st 90 day PSA 0.19 (repeated 0.18).
Radiation Oncology at JH recommended 38 Radiation treatments, together with 4 mos of ADT (I chose Orgovyx).
Completed rad tx May & ADT June. 1st PSA upcoming in Nov 2023.
Hoping and praying again for a quiet period.
Best, Michael
My PSA before treatment was 9. I had RP plus lupron and Erleada and they tested my PSA after 3 months after surgery and it was .01 and it has remained at that level for 17 months. It could be a PSA test right after surgery is not instructive to guide in treatment decisions.
Hope you get a quiet period also.
That is what we had been hoping with the 8 week test, but the second one was also elevated (unfortunately it raised significantly).
Thank you Kevin. Happy to hear you have had quite a bit of quality time with family and doing what you love. I’m hopeful for the same.