Post prostatectomy: What do rising PSA levels mean?

Wojo ,
Follow the Drs that you’re working with. I had RP removal and margins were clear……… for 6 years. The numbers started rising. 39 treatments of radiation treatments. That was in 2020. Sorry to say , buts lots of issues followed 2 years later. I would ask about ANY type of alternate therapy to radiation IF it comes to this later. Sorry this is so negative , but just want to stress to look at options versus automatically going with routine radiation. Best of luck to you.

Phil,
The damage from the radiation cystitis was producing a fistula near the bladder neck. I had a prior surgery in October to try to repair and seal that area with no success. Thus the cystectomy, while I was waiting for my appointment once we determined the repair was unsuccessful, the area that they had tried to repair started leaking again Through another fistula. The bacteria in the urine settles in the lowest part of your abdomen, which then can infect your pelvic/pubic bones. Through an MRI with contrast, they found that this infection was starting to deteriorate the pelvic bone in that area. So when they went to remove my bladder, they had to take out the damaged area of the bone until they saw a good bleeding bone For recovery. They tied in some antibiotic seeds to this area and now I am on a six week regiment of heavy duty infusion but able to do it at home thank God. The abdomen pain from the surgery is going very well. It is just the hip pain infection that is causing me mobility issues that I was not expecting. Al

Hey buddy, great news for sure! What was the debridement all about - was that part of the procedure?
Phil

Phil, just thought I’d pass on a note that I’m outta the hospital(Mayo Rochester) 6 days after surgery. I had to have debridement to my right pelvic bone and am on a 6 weeks antibiotic regimen for the infection from my bladder leak. Feeling pretty decent other than slow and sore walking. Great team of drs here. Now to learn the art of urostomy world. Al

Phil, she sounds like you’ve got a great attitude towards what you’re facing. I too was on ADT for a while, but that too was terrible and its own way. I will try to see if I can get a postop message out but yes, I am looking forward to The new me. It’s about a year of really rough go of it. Wishing you the best of luck in whatever works for you. Feel free to contact again just to hash out similarities Al

I've been checking and according to " chatgpt" the PSE test is not available in the USA . I've seen many people in the chat suggesting that people get the PSE test ? My health care provider has no information on the PSE test but always require a PSA test . Is it true that the PSE test is not available to patients in the USA ?

Welcome to the Prostate Cancer group, @hoard.
You ask a good question. What can rising PSA levels means years after having had a prostatectomy?
There are several reasons why one's PSA level may rise after being stable for a time. This article explains it well:
- PSA levels after prostatectomy https://www.medicalnewstoday.com/articles/323899.php

Here's an excerpt from the article:
"Seeing a rise in PSA level does not always mean that prostate cancer is returning or spreading. The test is very sensitive and can pick up small changes in PSA levels. Doctors will usually want to know how quickly levels of PSA in the blood are rising. To find this out, a person will need to have regular PSA tests. If levels of PSA remain stable or rise very slowly, treatment may not be necessary.

In some cases, high PSA levels in the blood are not due to cancer cells. Some factors that can affect PSA levels include:
- older age
- ethnicity
- medication
A doctor will take these factors and the person's medical history into account when looking at test results. This can help them decide if PSA levels are high enough to cause concern."

The PSA test alone is not enough to determine cause or next steps. Your doctor will likely consult with your husband and possibly order other tests. How long ago did your husband have his surgery? Did he have other treatments after surgery? Do you have a followup appointment schedule with his oncologist?

Hey conchman, it sounds to me like the 39 sessions of radiation did a job on your bladder neck. Not being a radiologist or knowing if your recurrence was in that area, I cannot hazard a guess as to why your treatment had such disastrous effects.
I know I was given a list - and a speech - of possible adverse consequences to having radiation but I didn’t know - and still don’t know what other options I had other than lifelong ADT.
What happened to you can certainly happen to me sooner or later. I will be pissed (not funny) at the world but all I’ll be able to do is shrug and have surgery like you are having. I’ve met men with bladder cancer (which I’ve also had) who’ve had the ileal conduit since their treatment involved complete cystectomy and they were pleased at having the option of not having to catheterize themselves or otherwise invade their body cavity many times during the day.
I was told that salvage treatment could reawaken my bladder cancer to a more aggressive form, but again I had to choose between dying from this or dying from that.
Surprisingly, my urologist told me that prostate cancer kills you slowly over many years but bladder cancer can kill you in ONE. So now I have 6 month cystoscopes which are far more anxiety laden than the regular old PSA’s let me tell you!!
I will be thinking of you and looking forward to hearing that all went well and your life has been made better for once…
Phil

Hi Phil, sorry I must’ve misread or didn’t understand that you have already had prostate removed. I am guessing the EBRT therapy is probably what I had also without looking everything back up. The only thing I can add then is I ended up with 39 treatments at Mayo Clinic in Rochester. The conversation was deeply about avoiding critical areas and they felt they could limit exposure. But as I learn where the targeting was it affected my bladder neck extensively. I don’t know if I really want to share everything as it doesn’t help you with any positive thinking. I will answer any questions the best of I can as long as you ask. I will be celebrating my 64th birthday in March. Currently scheduled to have ileal conduit surgery on Friday. In a way I am so looking forward to the surgery to get things back to normal. Again, ask anything and I’ll do my best.

I don’t believe cryo is an option for salvage treatment and he has no prostate so seeds are out too. Only option left is some form of EBRT