hope this helps others

[Takenca]

in 2004 I had my yearly physical at work and Dr said my PSA was rising and I should see my urologist. Saw urologist who gave me a DRE and d didn’t think much of it and thought I might be an infection and gave me some antibiotics to take. Btw, had just turned 51. Next year has the work physical and again told to see urologist. Gave me a DRE and didn’t think it was anything. This continues and in late 2008 my urologist gave me a sonogram and said it didn’t reveal anything.

shopping for a better price on life insurance I chose a Carrier who sent a nurse to my house for a blood sample. They denied me because my PSA was too high , I think 6. Something. I wrote a letter to then copying my urologist. He called me in for a biopsy. While on the table he was looking at my chart and said I don’t even know why you are here, I just did a sonogram 3 months ago. He continues with the biopsy . Next day my urologist calls me at work and tells me I have prostate cancer.

We have another meeting and he asks what I want to do. I think to myself this guy is suppose to be the doctor. He said he could do the surgery it I could go out of system ( I am in a HMO). I speak to a radiologist in the system and a robotic surgery at another facility. I chose the robotic surgery. Turns out my Gleason score was 7. I also had cancer cells on the margins. I monitored my PSA and it was 0 for a long time. 0 sex life since surgery (wasn’t that much before either).

Then in 2018 I visited a new urologist on another matter who said update was .18 last test and if it came back.2 she would recommend salvage radiation. It came back .3. Had 39 sessions of radiation and there was no change in my PSA. Monitored PSA every 3 months with ultra sensitive test and it was always creeping up (except when I tried the KETO diet and it dropped from .52 to .46)

In 2021 did pet scan with Auxim which didn’t locate anything. Recent PSA was .76 and had pet/ct scan with PSMA which located 2 tumors in my lymph nodes. I am in the middle of 5 sessions of SBRT..

Lesson learned

Looking back I always have felt my initial urologist failed me for not addressing rising PSA with a biopsy quickly.

Just realized today from reading posts that with cells on margins my pelvic region should have been radiated.

If it wasn’t so sad it would be a comedy of errors.

[BrentW]

A comedy of errors. Not so for me. My initial urologist did his utmost with brachytherapy, way back in 2004. It's just that two years of watchful waiting (I had 4 biopsies in that time, with 43 samples) had let the beast escape. I have been on continual ADT ever since. Sometimes life has felt good -- really good. Not so now, with Xtandi doing a real number on me with side effects. I do all I can to feel grateful and privileged.

[DesertDaisy]

You aren't alone.

My husband faithfully saw a urologist for 3 years due to a continually rising PSA. After the first year he did a biopsy in the office which was negative. The PSA continued to rise and the urologist assured us everything was okay and the rise was due to my husband's age which was 68 at the time. He said after the next PSA he would probably cut him loose after one more PSA and let his primary care follow-up with yearly PSA's.

When his PSA went up to 12 on the next visit, he finally decided a MRI would be in order. The results showed cancer and that it was probably out of the capsule.

He had an RP in 2021 and had a positive lymph node. He was given a 6 month Lupron injection after surgery and that was it was far as treatment. He switched over to an MO after the surgery and also consulted 3 times with an RO. We were assured that no other treatment was needed. I asked about radiating the pelvic lymph nodes and prostate bed and the RO's reply was "I can do that if you want me to, but there really isn't anything to radiate". So nothing was done.

He was undetectable until March of this year when his PSA came back at 6.3 on 3-31-23. Scans have been done and now there are positive lymph nodes as far up as his neck. He was given Casodex and an Eligard injection. We meet on 5-22 with the MO to see where we go from here.

I really feel more should have been done at several points in time with his treatment and have lost faith in doctors in general.

Wishing the best for you and all the guys here.

[maggiedrum]

Based on my personal experience I would recommend seeing a urologist when the PSA is 5 or higher. And a DRE before that. I don't think DREs are very accurate though. My PSA got to 9 before I saw a urologist and that was way too late. Biopsy showed cancer in every one of 12 quadrant samples and all on the margins. RP scheduled very soon after with MRI with special contrast before that. The cancer had spread past the prostate margins and into tissue that the RP could not remove. All in the seminal vesicles and at least one lymph node.

I really wish I had seen a urologist long before I first did. My MO was partly to blame and part of it was the change in recommendations on rising PSA due to false positives. My MO had also stopped doing DRE's on my annual physicals despite increasing issues with urination.

Personally if it were me I would have had biopsies much earlier too even if the urologist might have said it would be optional. Just my opinion.

I wish you well on your own journey.

[j-o-h-n]

Men should turn lousy doctoring around and I do mean around. We should give all of those shithead doctors an individual BRE......Broomstick Rectal Exam......

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 05/06/2023 6:22 PM DST