Prostate Cancer Survivors






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Re: Explanation for nondecrease in PSA despite prostatectomy?

Thanks for sharing that, Ted. It really highlights the fact that we are all different and it reminds me of a story we were told by the ships doctor on one of our sea voyages.

She said that early on in her career, when she was learning the art of surgery under trhe watchful eye of the Registrar, she came across a piece of anatomy that she didn’t recognize. She asked the Professor what it was and what she should do. “Don’t worry,” he responded, “That’s a GOK and the bst thing to do is whip it out.”

Naturally we asked her what a GOK was. “God Only Knows,” she laughed, “we see quite a lot of those!”

I have had a number of health issues to deal with over the past three years, most of which are a puzzle to the medical people I have consulted, one of whom told me that I should beware landing up as a medical mystery, since no-one knew what to do with them.

Good luck for your next PSA check – and may it stay below 1.6.

Re: Explanation for nondecrease in PSA despite prostatectomy?

Just a brief update. I enjoyed my holiday off from prostate worries over Christmas and New Year, now back to work on it I guess!
I had my third PSA test at the six month mark out from my robotic RP and it is now down to 0.67 (from 1.58 then 1.62). This seems to be consistent with the 9.4 gms of prostate which they left in me (see previous posts!).
The follow up MRI and TRUS seemed clear as have DRE's. The HAMA test also showed no interference by mouse anti-bodies in the sample (BTW my second opinion Uro was very grateful for the HAMA pointer and intends to make use of it in other cases if need be).
So, the plan now is to keep testing the PSA and if we get 2 rises we scan and biopsy,and then my Uros will advocate radiation I think. I will also look up the possibility of HIFU in that case. I do have quite a big target of prostate left to maybe consider a range of more unusual approaches!
But at the moment I could possibly just have a benign 9.4 gm lump of prostate. Time will tell.
I should also share with you that I achieved pad free continence in mid January, just over 4 months post surgery. However ED is taking longer!!!!

Re: Re: Explanation for nondecrease in PSA despite prostatectomy?

Thank you for your postings. I had rp on 1/18/08 and the first psa done was the same as before surgery. 2.8 before and 2.9 four weeks after, then another week it was 2.3. Yours is the only info I have been able to find. My surgeon passed away one month after surgery, and my urologist had not seen this. I have had a bone scan that showed nothing. I was thinking that maybe because I had problems after surgery (cat reinserted and then also a cystoscope to open scar tissue) that it affected my numbers. I noticed on the biopsy that the prostate was "stapled" together, and so I think there may be some benigh prostate left behind. Interesting on the hama because I had pet rat when I was kid. I am 63. I now am going to not be so worried and wait.

Post-RP PSA persistence: Social network / discussion

For guys who belong to this peculiar club, there's now an area of the prostatecancerinfolink social network where this issue is discussed and debated:

Re: Explanation for nondecrease in PSA despite prostatectomy?

John, I don't know why they wanted you to have PSA tests at 4 and 5 weeks post op. Walsh recommends nothing before 12 weeks.

I am sure that this is because of inflammation and it is interesting that your PSA is going down as the weeks go on.

I was left with 9.4 grams of prostate after my robotic and the PSA was 1.58 at 6 weeks, 1.62 at 3 months but right down to 0.67 at 6 months. In other words it took 6 months to go down.

My Uros believe that even though my remnant is largely detached from the urinary system, it will still be subject to inflammation which will cause PSA variations.

In June/July I am having a sequential MRI and TRUS to examine the remnant further, along with another PSA. If any area is suspicious I may leave it and go on with active surveillance or I may have HIFU. I am thinking that HIFU may have less side effects and no collateral damage compared to radiation. I have been to see a UK HIFU specialist who thinks HIFU as salvage in my case would be succesful. But then I guess he would wouldn't he?

One thing for sure is that I will not rush in again!

Anyone got a view on this? I have read the HIFU stories here and one of them is alarming but the scare stories seem to be after radiation. I can't find any for post surgical situations like mine.

Ted from England

Re: Re: Explanation for nondecrease in PSA despite prostatectomy?

Well, here's my reason for having elevated PSA after surgery:

Paul from Rhode Island, USA

Re: Explanation for nondecrease in PSA despite prostatectomy?

Hi Paul A

As you can see from reading my bits here, my story has some similarity with yours.

My surgeon (Professor Roger Kirby), unlike yours it seems, is very experienced. (Over a thousand by the open method and I was about 220 of his robotics). He was thrown by my previous TURP and to use his words, he lost his landmarks.

He did however get 50 grams of prostate out and "only" left 9.4 grams behind. It appears from what you say that your prostate was only 17 cc to start with and yet yours left behind 15 cc! You have to wonder what he was doing whilst you were out!

My last PSA was 0.76 (with PSA density of 0.08)and a non multisequence MRI and a TRUS seemed to show benign appearance. But I am having a PSA in June and a multi sequence scan and another TRUS in July to see if I need another biopsy of the residue.

Then what? I'm beginning to think that the cancer I had originally was insignificant. (Very small percentage of 3 needles out of 33 taken in 2 biopsies and then the path. report after the operation showed only 0.3 cc of cancer volume with no SV or other involvement). In fact my third opinion uro speculates that I might have been better advised not to have had an op at all.

So if new tests show insignificant cancer I might just say SOD IT and leave it alone. I'm fully continent now although still with ED and I don't want to regress.

On the other hand if it looks bad I have to decide between radiation and HIFU. My previous uros who told me that the robot was the gold standard, now tell me that in my situation, radiation is the gold standard. My third opinion guy tells me that HIFU would be the gold standard in my case. (He is a UK HIFU pioneer, so no surprises there).

I guess I'll just choose on the basis of which side effects are the worst to live with. Radiation and collateral damage. HIFU and all those blockages and sloughing. Watch and wait with its psychological pressure and possible cancer progression.

Choices, choices.

Ted from England.

Re: Explanation for nondecrease in PSA despite prostatectomy?

perhaps residual? Unless I missed have you had radiation? I have had rp and rad and it still rises from .25 to now 4.86 2-3 yrs later...I can feel your FRUSTRATION...LOOKING INTO PAW PAW, CURRENTLY TAKE IP6

Re: Explanation for nondecrease in PSA despite prostatectomy?

Hi Phil,

Since my initial post, I've undergone three different kinds of therapy, and my two most PSA tests have returned "undetectable" (i.e., <0.1).

I've never received an explanation for the phenomenon (nondecrease in PSA despite prostatectomy), but I have succeeded in ruling out two possibilities: The prostate gland was indeed removed, and the standard HAMA-based PSA assay is indeed valid for me.

I don't know what you mean by "perhaps residual?". The surprise was not that the first post-RP PSA test found residual PSA; it was that it found so *much*. If you have a 2-liter bottle full of water and you empty the bottle, you might then expect to find a few drops left, but finding a residual 1.9 liters is extraordinary.

Re: Explanation for nondecrease in PSA despite prostatectomy?

Paul C, what other therapies did you have before the PSA dropped to undetectable?