So, so many questions and worries.

blockphi

First time visitor, first time posting…

A bit about my story first. I was diagnosed on 9/28/23 when I was 48 years old. Gleason 9, CHEK2 mutation. Had the prostectomy in November of '23. Prior to the surgery I was having lots of low back and lower body pains and fatigue. Post surgery those pains and fatigue were absent until about June.

First post op PSA: .013

Second post op PSA: .048

Third post op PSA: .104 (Results received yesterday)

We knew that there were positive margins post op and that radiation was on the horizon, just not 100% sure when we will start that. Since about June, though, I've been having lots lower body pain again along with heavy fatigue.

Obviously my first question is whether or not there is a connection between my rising PSA values and the resurgence of pain and fatigue.

The second question is really how worried should I be about the rising PSA values? Having the CHEK2 mutation raises my susceptibility to other cancers and it appears that the mutated gene came through my mom and her mom. Her mom passed in her mid-60's after three or four bouts of cancer in quick succession. I think the memory of her illness (Back in the dark ages of the 1990s when cancer was more of a mystery…) has really raised my overall anxiety about things.

Anyone else here of a similar age? What have your experiences been? How did your recovery go? How's your functionality after recovery?

And the big question: How do you all keep from just saying fugg it all? The appointments, the tests, the uncertainty, the drastic changes to sexual function… . It feels overwhelming so often (Even without adding in the fact that my partner has a chronic illness of her own that we are also dealing with…)

Thanks all,

P

Wheel

p,

Prayers are with you. I had my surgery last Thursday. In ER Friday with catheter blocked by blood and ER needing to flush out the catheter to clear the blood. In ER again today Wednesday, blood clot in calf. I just got back from ER. My wife is getting overwhelmed emotionally. She just was not expecting this. Let alone Surgery was 6 1/2 hours when she expected me out by 4 hours and was thinking in her mind the worse that the surgery had gone south but actually the Surgeon was so good although he was certain he had it he decided to not close and send to Pathology and wait and they came back and he was shocked later saying it was deeper then expected or could be seen with his experience. He then went back into to clear more and spent all the extra time although he had another operation at 1:00pm and did not finish with me until 2:30pm. I think the blood clot formed from me being in the surgery position so long. I also have non Hodgkin’s lymphoma and had chemo therapy 20 years ago and later Rituxan so you just keep pushing forward. As you will see even eith many worst cases of high Gleasons people are still around 15 years later.

Rob.Ski

Blockphi,

Hang in there, the fight can be a drag but, what else we going to do.

Have you had a pet scan?

Regarding experiences, I was 51 at time of RP, gleason 7, 53 now. Very fortunate in recovery, fully continent and sexually active.

Clevelandguy

Hi,

I would think that a year later you still have some recovery improvements to come, I plateaued out at around a 1.5-2 yrs. I assume your talking about ED and bladder leakage. As RobSki said I would look into a PMSA Pet scan which should pinpoint any new cancer and if it’s related to your back pain/fatigue. The PET scan results should point your medical team towards the next step. I would not get discouraged yet, if they do find more cancer there are a lot of tools left to treat the new cancer. Unfortunately the tests, biopsies, uncertainties are all part of the dance we have to play. I try and put it out of my mind as much as I can and get anxious only around medical appointments. Take the trips, go to the family functions, enjoy life as much ad you can.

Dave 3+4

Marlon

blockphi, Thanks for coming here and sharing. I am 2 months post surgery, and my first PSA was non-detect. So Im happy with that. But I know it could come back anytime. What my doc said was that they would watch any positive results but that PSA would have to get high enough for them to be able to identify exactly where the cancer was, in order to target treatment. It's the rate of change that is significant.