Connect
One year past prostatectomy, in waiting mode.
A year ago I had my prostatectomy- Gleason 8, age 71. Path report indicated ECE, but surgeon removed lymph nodes, seminal vesicles and bundled nerves. Essentially, it was the whole roto rooter job to remove all potential new landing zones. Have had three PSA checks in three month intervals since then, all undetectable.
This is a strange place to be. They won't give you radiation or ADT until there is evidence of spread, but with ECE there is probably some micro-metatastisis going on where the prostate used to be and that no one can see. I'm wondering if others have been in this DMZ-like state, but then went on to never have a recurrence. Does that ever happen? Visit this discussion board and you would reach the conclusion it doesn't. Everyone here discusses their on-going ordeals with ADT, radiation, or other treatment. I feel like I am waiting for the inevitable, and in a strange way, almost wish I could get it over with rather than have this hanging over my head, if that even makes any sense. How do you wrap your head around this? Being in this sort of no-man's land can really play games with your head. The psychological impact is something I never really thought about when all of this began a year ago. Now, it's all I think about. Thank you.
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
Your positive attitude is a inspiration to me Sir ! I am post surgery 3 years ago and then underwent External Beam radiation ( EBRT) or Salvage radiation as my PSA was kind of rising a little after surgery from 0.09 to 0.14 over a year . So had EBRT 22 sessions at hospital . Crew was great ! That was two years ago . It took a while but now my PSA is at 0.041 ....from0.13 and then 0.11 right after radiation , then 0.072 , then 0.056 , now im at 0.041 . thats after two years . SO , I gather im doing ok? I always wonder ! God Bless you Sir . James on Vancouver Island .
I'm having the same experience as you with Mayo Phoenix. My 3 month PSA test after bilaternal NS RALP was a standard PSA test at .04 and there was no discussion about getting an ultra-sensitive PSA test nor increasing the frequency. I don't know but I suspect you're correct that with a favorable pathology report with clean margins it just isn't indicated to ask for ultra-sensitive PSA testing unless the PSA gets up to .1
A little confused by your results. You say you are at .04 without an ultra sensitive test. I don’t get an ultra sensitive test and the lowest number I can get is less than < .1. How are you able to get .04 without an ultrasensitive test?
-
Like -
Helpful -
Hug
2 ReactionsGood question. I may have misspoke. I'm remote from Mayo Phoenix so I get the PSA locally through Quest laboratory in my town. So my Mayo lab order that I printed and took to Quest simply ordered a PSA test. When I got the results, the Quest lab report showed a number of ".04" rather than something like "< .01". The lab report also said it was done with using the Siemens chemiluminescent method. Frankly, I didn't look further until your question to me. So maybe Quest in my town just did an ultra sensitive test, even though I don't believe that's what Mayo ordered. I don't know and I haven't followed up on it yet to see what Quest says. To further complicate it, my brother (a 30 PC survivor) continues to get routine PSA tests annually. He shared with me that his PSA has been undetectable (with the standard PSA test) for years, and that his last test at Quest showed .04 as well. Seem coincidental that we both ended up with a .04, so he speculated that .04 might be the bottom of sensitivity at Quest on their "standard" PSA test. Speculation aside, I do believe the PSA test Mayo ordered was just the standard PSA, but .04 was what was reported by Quest. I also agree it's contradictory so your question was valid and appropriate.
-
Like -
Helpful -
Hug
2 ReactionsMy uPSA test results from Qurst Diagnostics explains that the lower limit of reliable detection is .02 and that all results at that level or lower are reported as less than .02
My blood draw is in PA, and the tests are run in a Quest lab in CA.
-
Like -
Helpful -
Hug
2 ReactionsI agree with peterj116 "don't get ahead of yourself and there is no point in researching things that may not apply to you." I was diagnosed with PC in 2016 (Gleason 6) and placed on Active Surveillance for two years until my final biopsy indicated Gleason 7. During this 2 year period I did lots of reading but no serious research during this part of my journey. However, the Gleason 7 changed things and I did a lot of research as I had to make a decision; RP, Radiation or Brachytherapy. I chose RP. Like you, my PSA after surgery was undetectable < .008. I would recommend going to a lab that uses an ultra sensitive PSA; in British Columbia that is < .008. My PSA did rise to .052 by March/2020 and my urologist referred me to an oncologist for a consult. By September 2020 my PSA had doubled to .110, so something was definitely happening down there. Six months later it reached .210. I was willing to pay privately for a PSMA-PET scan but wanted to wait, with the support of my oncologist, for my PSA to further increase so there was a better chance of the PSMA-PET scan detecting the location of the cancer. During this period I was doing lots of research as some professionals were recommending waiting until your PSA reached .400 while others were saying that you should have salvage radiation once your PSA reaches .100. This was a very stressful period . By January, 2022 my PSA had reached .290 and the PET scan detected a small cancerous cell where my seminal vesicle had been. The decision was made to have salvage radiation. It is now 27 months post radiation and my PSA continues to be undetectable at < .008. Am I cured, who knows, but I am now 82, still golfing, skiing and playing squash and hope to reach age 90 and I am not doing any research on what may lie ahead. We are on a long journey which will have some twists and turns but just take it one step at a time.
-
Like -
Helpful -
Hug
6 ReactionsAsking guys for their results on a forum like this isn’t going to give you a realistic perspective. You would need thousand of responses to understand the patterns. Check out the Sloan Kettering monograms to get some perspective which is based on data:
https://www.mskcc.org/nomograms/prostate/post_op
-
Like -
Helpful -
Hug
4 ReactionsTango, you sound. Exactly like ME! After RP. I immersed myself in online research, knowing deep down that my cancer (4+3 unfavorable) was gonna come back.
As my PSA’s inched up ever so slowly - and then dropping! - I felt tortured by the waiting game. I asked my urologist to send me to an RO but he refused, saying that the PSA’s were nowhere near the magical POINT TWO.
Why wait? It’s gonna spread to my bones! I’m gonna die while you guys watch!
I did this to myself for almost FIVE F****ING years!!! So when I finally was sent to a RO with a PSA of .18 I literally jumped for joy and became incredibly calm and serene. All scans were negative and I am now on ADT and will start salvage radiation in 2 weeks.
Yes, it sounds insane that I could be happy over this outcome, but my personality simply demands action, prevention and peremptory strikes on things I deem threatening. It is a character flaw I can do nothing about.
You may NEVER have a relapse but take heart in this: recent studies show NO difference in outcomes for men with intermediate grade PCa whether they are treated immediately or ten years down the road. As long as you tend to your PSA’s and have PSMA’s done if your numbers get close to .2 you will be fine.
Enjoy your time NOW and don’t try to micromanage or worry yourself sick. I did, and it was a total waste of time and energy. Best
Phil
-
Like -
Helpful -
Hug
10 Reactions