I'm 69, retired, and live a peaceful life in southwestern Virginia with my wife and cats. When I turned 65, I had my first Medicare annual physical. The routine PSA test result came back at 14.0! A retest had it at 13.8. Now the backstory. I was diagnosed with severe ulcerative colitis in 2001. Fast forward to 2016 when I ended up in the local hospital for six weeks with my colon inflamed and drug-resistant. After five blood transfusions, the docs said time for a sub-total colectomy. I had an end ileostomy for 13 months. I was told I still needed another major operation--(1) I could keep the ileostomy but would still have to have my rectum removed and the anus closed; or (2) I could lose the ileostomy and have an internal j-pouch created from my small bowel which would allow me to poop as usual, only it would be 7-9 bowel movements per day. I hated the ileostomy. After much research, I selected a surgeon at the Cleveland Clinic and had the j-pouch procedures in 2017. Both surgeries went fine. The j-pouch however, never met my expectations. My diet was severely limited. I suffered from chronic butt-burn. I lost sleep as I was up emptying my j-pouch 3x a night. I was miserable but kept thinking things would improve; the docs could surely figure something out. Invasive testing followed with no change in my misery, followed by months of uncomfortable pelvic floor physical therapy. That was my state of being when I received the 13.8 PSA test result. My primary doctor said I needed a MRI of my prostate. When the MRI came back positive for cancer, a biopsy was ordered. I went back to Cleveland Clinic since a transperineal biopsy was required because I had a j-pouch. The biopsy had my Gleason score at 3+4. Because of my j-pouch, radiation was never an option. A radical prostectomy was in order, however a major concern was all the scar tissue from my previous j-pouch surgeries. Fortunately, at that time, a newer single-port Da Vinci was being used successfully. Using a single incision in the abdomen, the prostatectomy was performed as a transvesicle operation through the bladder, bypassing all the scar tissue. During the surgery, both seminal vesicles were also removed. The pathologist later reported that cancer was also found in my right seminal vesicle. My PSA post-surgery was 2.0. A PSMA scan followed but was negative. It wasn't until I had a routine pouchoscopy in the fall of 2023 that biopsied tissue showed evidence of prostate cancer in my j-pouch! Apparently, this was an extremely rare occurrence. My oncologist ordered another PSMA and this time it showed an uptake on the backside of my j-pouch. I looked at the bright side. I thought now is the time to finally get rid of the j-pouch--and with good reason. My colorectal surgeon and gastroenterologist agreed and today I'm back to a permanent ileostomy. That surgery took place in January 2024. I am so much happier. I can eat pretty much whatever I want, I have gained 15 pounds and am back in the gym. So losing the j-pouch was a good decision. It also lowered my PSA to 0.3 where it stayed for about six months. Last week's quarterly PSA test came back showing a rise to 0.4. I'm to discuss next steps with my oncologist next week. He has had me in active surveillance so far. I don't know what's next; we've discussed starting ADT if my PSA rises enough to warrant it. Glad I found this forum. It's been interesting to read about others' experiences with this disease, the various therapies out there, and what's on the horizon. I appreciate you all. Thank you.
JohnP
My hubby's story
My Story
post prostatectomy psa
My first year with prostate cancer
PSA vs PSMA
