PSA Rising: Had surgery in November... - Advanced Prostate...

Advanced Prostate Cancer

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PSA Rising

Whatnext2019 profile image
21 Replies

Had surgery in November 2021. Gleason 4+3...Post surgery PSA was 0.01. Positive margin (1 millimetre).

PSA has risen from 0.1 to 0.06 in 24 months.

Doctor says I should do nothing. Until it hits 0.2. Next test is June 2024.

Any advice will be appreciated.

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Whatnext2019 profile image
Whatnext2019
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21 Replies
GP24 profile image
GP24

Your doctor is right. When it gets above 0.2 ng/ml you can get salvage radiation.

Justfor_ profile image
Justfor_

From the only two PSA values that you quoted, your PSA doubling time is (like mine) 9-10 months. It is in the gray zone for aggressiveness. Half-full glass people would stratified your case as "intermediate favorable", but most would landed a notch further up to "intermediate unfavorable".

Waiting until June 2024 for the next PSA count is perfect for your, apparently lazy doc, but not the best service to yourself.

Disclaimer: I am not the typical patient that: "Finds a good doctor/s and follows their advice", because there aren't unanimously accepted criteria on the competences of a "good doctor". I am my primary self advocate and do things my way. My bio has enough information, if interested.

dans_journey profile image
dans_journey

I posted this in response to another person's question on the same topic:

I had a prostatectomy and 54 months later, my PSA came in at 0.05 ng/mL. I went into full panic mode.

My PSA bounced up and down between 0.04 and 0.08 for the next 18 months, so we opted to just monitor it. But then it started a steady but slow upward climb. It took 6 years for it to get to 0.20.

At that point, I paid out of pocket for a PSMA PET scan to see if we could located the cancer when my PSA was 0.22. The good news was that the scan didn't light up like a Christmas tree; the bad news was that it didn't provide any useful information to the radiation oncologist.

I really wanted the RO to know that he would be zapping in the right location, and one of the reasons for the delay was my hope that the PSA would get high enough for the PSMA PET scan to be able to determine the location. I mean, why zap the prostate bed and risk damage to the surrounding area if the cancer has already moved elsewhere?

Six months later, just before starting salvage radiation therapy (SRT) to the prostate bed only, my PSA increases had accelerated and it was at 0.36.

The SRT knocked my PSA down to 0.13 and then two months later to 0.11. It was good to see a downward trend. My next PSA test six months later nearly doubled to 0.21. That was disconcerting, so we retested five weeks later, and it was up to 0.33. That was in November 2023.

We're in the process of trying to figure out the next steps. I go for a bone scan next week and, while it likely won't show anything at my PSA level, it's part of the protocol where I'm getting my treatment. If it's negative, I should be able to get another PSMA PET scan, this time paid for by my insurance.

BTW, my initial diagnosis was Gleason 3+3 that was upgraded to 3+4 after surgery. My prostate came out cleanly—negative margins, no ECE, LNI, SVI, nothing.

Obviously, it appears that the SRT failed, so that raises the question: Should I have started SRT sooner? I don't know. Maybe. Maybe not. I do know that I had 6 years of a decent quality of life while waiting for my PSA to hit the traditional definition of biochemical recurrence at 0.20.

I was worried about suffering side effects from SRT, so that was another factor that went into the delay. That worry may have been unnecessary.

The SRT has been completed 18 months now, and fortunately, the side effects have been minimal. My stress incontinence has grown slightly and my ED has worsened slightly. Fortunately, no bowel control issues (but I understand those can pop up years down the road).

In your case, keep PSA testing and try to determine the PSA doubling time to see how rapidly it's growing. The PSA doubling time calculator on the MSKCC website needs PSA values of 0.1 or above to do the calculations.

For me, it was important to preserve my quality of life for as long as I could while not letting the cancer get away from me. It was a crap shoot that I was willing to take. You may have other priorities or desires.

Because you had a positive margin and I didn't, that certainly adds a complicating factor to your situation and may make getting SRT more urgent.

If you watch the video from the Prostate Cancer Research Institute in my post here, Dr. Scholz talks about the value of letting the PSA rise to the point where newer imaging technologies can detect the location of the cancer. It runs counter to the traditional standard of care, which is to start salvage radiation after three consecutive increases in your PSA after a prostatectomy.

dansjourney.com/2023/11/14/...

RJAMSG profile image
RJAMSG in reply todans_journey

I’ve been following your journey since mine began in 2019. I’ve found it quite helpful along the way. One thing I’ve not seen on your Journey page is what the pathology report showed for your cancer besides 3+4 like % of each type and if you’ve had any type of genetic testing. Thanks

dans_journey profile image
dans_journey in reply toRJAMSG

Thanks for the kind words.

You know, that's one bit of information I don't have. I don't think I was savvy enough to get the Gleason score breakdown by percent after the surgery.

I haven't had any genetic testing yet, either. I'll be speaking with a medical oncologist in the future, and that's one of the questions on my list.

All the best!

Tall_Allen profile image
Tall_Allen

Doctor is right. There is no benefit in getting salvage radiation sooner. You want as much time as possible for tissues to heal.

Steve507 profile image
Steve507

In February of 2021 with PSA at 0.05, I went forward with 8 weeks of radiotherapy 23 months after surgery. I was quite aggressive. I'm less than 0.01 today. Glad I chose this at 62 yearsof age.. No side effects worth mentioning. That was me!

Good luck...

Radars profile image
Radars in reply toSteve507

why did you have radiotherapy with a psa of0.05 that's undetectable, mine has been 0.04 for nearly 8yrs after rt/ht.

Steve507 profile image
Steve507 in reply toRadars

I had DaVinci Robotic Surgery March 2019. My PSA rose 3 consecutive times to 0.05 starting after 9 months fr9m surgery. I also had a 0.5 mm margin. In a perfect world, I would have waited until 0.11( not until 0.2), but I was retired at 62 from my university in Doha, Qatar. I was uninsurable in the USA, (great country) so elected radiotherapy before leaving Qatar. 2.5 years later I had one bladder infection in August 2022. Otherwise, my plumbing works as it should and my private 1st class Woody Johnson still stands at attention like a good soldier does.

I made a good choice--- that is the right choice! I was a bit lucky, too. Remember PSA of 0.2 is no magical number. It's is an historical cutoff for Biochemical Recurrence. It was considered BCR before the ultrasensitive assay came along.

Remember fellas! It's your life and not the Doctors' Be your own best advocate for no one else can be.

RJAMSG profile image
RJAMSG

I may be in the minority here, but since you had positive margins and were GG3 why wait if you’re ready health-wise. What was the GG at the margin? Also, was it <1mm or 1mm. Did you have Decipher genetic test done on your pathology post surgery? Sometimes that can determine how long you wait too. My thoughts.

NecessarilySo profile image
NecessarilySo

"PSA has risen from 0.1 to 0.06 in 24 months." FYI that is a 40% drop, not a rise.

Whatnext2019 profile image
Whatnext2019

Sorry, it was 0.01 to 0.06

Whatnext2019 profile image
Whatnext2019

Thank you all for your response, well appreciated.

Tommyj2 profile image
Tommyj2

unless my math is off your psa has dropped not increased.

Teacherdude72 profile image
Teacherdude72

PSA has risen from 0.1 to 0.06 in 24 months? That's a decrease not an increase. No need to be concerned. Doubling time and 2.0 or more is cause to have other treatment discussion with your MO.FYI. I am now in my 8th yr and started G9. Starting a Holiday from Lupron and Nubeqa tomorrow. PSA has held steady at <0.02 for years. On those meds 32 months before today.

My suggestion is: Relax, live your life and enjoy

ron_bucher profile image
ron_bucher

Make sure you have on your medical team an oncologist who has had 100 or more prostate cancer cases.

Get your PSA tested every month or two since the trajectory and doubling time are more important than the absolute value.

Take with several grains of salt whatever recommendations you get on treatment decisions from anyone who isn't an oncologist with a lot of prostate cancer cases.

I'm happy to discuss privately if you have any questions about my experience shown in my profile. Having been diagnosed at a relatively young age, I've been on the aggressive end of the spectrum with my treatments.

Steve507 profile image
Steve507

It rose 3 consecutive times.

j-o-h-n profile image
j-o-h-n

The military drill command is "Mark Time!”

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 01/09/2024 11:29 AM EST

Mgtd profile image
Mgtd in reply toj-o-h-n

Have not heard that in years. Thanks for the memories.

j-o-h-n profile image
j-o-h-n in reply toMgtd

Looking back.... they're fond memories now.......... Young and full of piss and vinegar...

youtube.com/watch?v=y3KEhWT...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 01/09/2024 7:34 PM EST

NanoMRI profile image
NanoMRI

Well, I would not wait. Six years ago, at 0.01, after RP and salvage RT, I had salvage extended pelvic lymph node surgery, after Ferrotran nanoparticle MRI lite up suspicious pelvic nodes (Ga68 was 'clear'). Cancer was confirmed at the para-aortic lymph nodes. Just today, latest usPSA, 0.031, no ADT, no chemo.

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