Prostate Cancer Survivors






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Re: Explanation for nondecrease in PSA despite prostatectomy?

Funny you should ask that today, Ralph, as I do have news, but it’s not promising.

I had my second post op PSA yesterday, which came in at 1.62 (at 86 days) compared to 1.58 on day 43. To all intents and purposes that is 2 PSAs of 1.6 which is the PSA I started with when I first tested for it back in 2000. DRE today was negative as was urine sample (suggested by Terry’s contact Dr K).

After my TURP in November last year the PSA fell from 2.2 to 0.99 after 3 months.

My uro is one of the leading urology professors in the UK and has conducted probably more robotic procedures than anyone over here. (His early training in the open method was under Walsh). He is perplexed since the pathology (no SV involvement, no ECP, clear margins, no LN involvement and confirmed moderately well differentiated Gleason 3+3 along with all the pre-op biology such as 3 needles out of 33 in 2 biopsies showing only minute amounts of adenocarcinoma, clear MRI and bone scans, did not suggest this). The excised prostate in August this year was 50 grams and the tumour volume was 0.3cc. He is insistent that he achieved complete cancer clearance and there was no spread.

But he also tells me that he left an amount of benign tissue underneath the bladder neck which he thinks is causing this. The reason he had to leave this was because my first uro (who is also a leading exponent of the LP technique in the UK and a European professor of urology) did such a thorough TURP last year, that during the RP this year it was difficult to see where the prostate started and finished. My uro had to err on the side of caution as he neared the bladder sphinctre and the ureters. Had he been too heroic he could have cut the sphinctre and left me like a leaky bucket and - worse - he could have damaged the ureters and affected the kidneys.

It was my TURP uro who discovered the cancer and with whom I was doing Active Surveillance, who recommended me to my current uro. Each of them tell me that if they had to have prostate surgery they would choose the other to do it. I trust these guys implicitly and I am assured that I could not be in better hands.The two of them are intrigued by my story and have decided to work together to get to the bottom of it. As a first step they sent me for another MRI today to get a picture of the post op anatomy. They are also looking into the HAMA theory. They confessed that this was new to them and my RRP surgeon assigned his nurse to locate a lab in London that will either screen the blood for HAMA and/or provide a PSA test that screens for it. This is not so easy to find in the UK as I had hoped and it may be that they will have to send the sample to the States. They are enquiring of Bostwick, Quest and TDL so far. His gut feeling however is not for HAMA involvement but for PSA from the residue and possibly I suppose from the other glands mentioned in this thread in Terry's email from Dr K. Also, despite the prostatectomy, we have to even consider BPH at the margin where tissue remains!

I guess the pessimist in me is prepared to find out that this may have spread but like I said in an earlier post, I am determined to check all basic premises and data before I consider any new treatments and morbidities. I still need an answer (as does Paul?) as to why, if indeed the CaP had spread before excision, are the PSA figures virtually identical before and after surgery? Why were the pre-surgery PSA readings not bigger if there was any spread? (After all, my TURP removed at least 15 grams of tissue and 2 needles with less than 5% of tumour and yet the PSA fell from over 2 down to 0.99).

Watch this space!!

(PSA history: 2000 to 2004 = 1.5 > 1.6. 18 Jan 06 = 2.04. 21 August 06 = 3.23. 30 Sept 06 = 2.64.
TURP November 06. 05 February 07 = 0.99. 24 May 07 = 1.18. 17 July 07 = 1.75. RP 21 August 07. 03 October 07 = 1.58. 15 November 07 = 1.62)

Re: Explanation for nondecrease in PSA despite prostatectomy?


That’s fascinating stuff – for us as observers, but probably not so much for you. I have had some very odd medical issues to deal with in the last year (not apparently prostate cancer related) and one of the medical men I consulted said “You don’t want to be a medical mystery, you know. We don’t know what to do with you then!” it certainly seems that you fall into that category.

I must say, that from what you have said here, the view of our good doctor that a bit of left over gland is what is causing the problem makes a deal of sense. Although I would also share with you the puzzlement as to why the PSA is the same before and after the surgery when the tumour has been removed. But then it was a very small tumour and one wonders if it was generating much PSA or whether the pre-op PSA was coming from the enlarged gland – even after the TURP it was double a normal gland in size.

Have you ever done any of those calculations which attempt to estimate the PSA generated by an enlarged gland. It might be interesting to see what the estimated tumour related PSA was. There is one of the calculators available here

Please let us know how things go.

Re: Explanation for nondecrease in PSA despite prostatectomy?

I now know a lot more about why my PSA remained virtually unchanged after my robotic and never decreased. In reply to Paul earlier I said my PSA at the 6 and 12 week marks post op, was 1.6 (virtually the same as 6 years before surgery!)and that my uro had told me that he had left an amount of benign tissue behind the bladder neck.

I have now had another MRI and a TRUS which shows that he in fact left behind a piece of prostate about 9.4 grams. (I had 50 grams removed at prostatectomy and 15 grams removed last year by TURP). His opinion and all the second opinions I have had, say that the PSA I am registering now is commensurate with a piece of gland that size - especially in its post-operative inflamed state.

The radiology second opinion confirms it is likely that the current PSA level is the natural nadir for me. Further it states that the evidence is that the sustained PSA level is secondary to retained prostate tissue and that on both MRI signal criteria and vascular criteria, there is no evidence of residual tumour.

The way we are going with this is to watch the PSA and also to do a repeat MRI in 4 months. The repeat MRI will be done as a dynamic sequence with diffusion-weighted imaging. If we need at any point to biopsy we shall do 12 needles.

If cancer does come back or is still present, we have a big enough target to be quite adventurous with a choice of therapies that could include seeding, cryo, HIFU.

Obviously it's a bummer that he could not get all the prostate out, but he and the second opinion said that my anatomy was very different and that my previous very thorough TURP had confused all the landmarks and the anatomical architecture. Under these circumstances they had to err on the side of caution as too much heroism could have given me much bigger problems. My uro has done around 1,500 prostatectomies and my second opinion tells me that if this man couldn't get it all out then no-one would.

I did have a blood test to check for HAMA interference with the sample, but we are still waiting for that to come back from the States. It doesn't look as though interference is involved here now that we know the size of my remaining prostate tissue, but it's still worth checking.

I am now a firm believer in not rushing anything and resolutely checking the simplest premises before moving on. I'm just resigned to being one of nature's different cases. Both my uros have never had anyone in either of their series with my story.

Anyway I'm taking 2 months off prostates now until I check my PSA again maybe in February.I am 105 days post op now and continence is going really well (one TENA level 2 pad per day which I only wear when I go out). The other bits are stirring too, so all in all I'm quite relaxed.

Happy Christmas to all and a good prostate holiday!

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?