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Explanation for nondecrease in PSA despite prostatectomy?
I ask because of a persistent PSA that seems remarkable to me:
5.2 and 4.6 in May, before RP
4.7 and 4.6 a few weeks post-RP
I'm guessing that a post-RP PSA decrease of less than 15%
implies one of the following:
I was born with ten prostates; only one was excised. :-)
I have a lot of non-prostate tissue that makes PSA.
I have some non-prostate tissue that makes a lot of PSA.
The serum half-life of my PSA is vastly more than 3 days.
Almost all of my prostate cells were extraprostatic, AND my actual prostate had been manufacturing no PSA, AND my nonprostatic prostate cells are not doubling.
The lab mixed me up with someone else on both occasions, or put the decimal point in the wrong place on both occasions.
My question is this: What other explanations might there be
for this phenomenon, if any? How rarely does it happen that
RP has no effect on PSA? Is there any literature on it?
I find it intensely frustrating that whenever I ask the question,
"What could explain this phenomenon?" I never get a reply to the
question I asked. Instead, I'm told that the doctor is concerned,
I'm told about followup tests to be done, I'm told what kinds of
treatments might be considered, but am never told the possible
cause(s) of the phenomenon.
In the past six months since my initial diagnosis, I've read
several thousand pages on prostate cancer and read the stories
of hundreds of men, without encountering even one case resembling
mine. And yet my case is lumped with the cases of the thousands
of men whose RP decreases their PSA level to near-zero, followed
by slow relapse over the next months or decades. Perhaps this
lumping is appropriate; but maybe it isn't -- how can I know?
Thanks in advance for whatever information or reference
you can provide!
Paul Carpenter
PaulC1956@yahoo.com
Below is a summary of my case to date.
PSA values before prostatectomy:
0.9 on 2002-04-19, per general practitioner, lab#1
0.8 on 2004-01-15, per GP, lab#1
1.3 on 2005-05-20, per GP, lab#1(?)
5.2 on 2007-05-09, per GP, lab#2 (Hybritech)
4.56 on 2007-05-21, per urologist (different lab)
PSADT: ~14 months (as computed in May by me)
Biopsy (performed 2007-05-29):
Prostatic volume: 19 cc
Dimensions: 30mm x 41mm x 29mm (height x width x length)
Hypoechogenic lesion, right mid
Three samples positive out of 12 total --
{A,B,C} = left {base,mid,apex}; GHI=lateral
{D,E,F} = right {base,mid,apex}; JKL=lateral
A_CD_FGHIJ_L neg: "benign prostate glands and stroma"
B (left mid) : G3+3, measuring 1mm(=10% of tissue)
E (right mid): G3+3, measuring 4mm(=10% of tissue)
K (right mid lat): 43+3, measuring 4mm(=70% of tissue)
Pathology report from RP performed 2007-08-24:
Lymph nodes (three L, three R): no evidence of of carcinoma
Neurovascular bundles (right base and right mid): "No evidence of carcinoma or prostatic glandular tissue"
"Prostatic adenocarcinoma, Gleason score 5+4=9, involving the right prostatic lobe and extending extraprostatically to involve the right posterior adipose tissue"
Re: Explanation for nondecrease in PSA despite prostatectomy?
Hey Paul, you've definitely got the right attitude - keep it up. Obviously you have some prostate cells that are still making the evil elixir, PSA. From my understanding a Gleason of 9 is pretty damned high-risk. I had a friend recently diagnosed with that score and his surgeon is a self proclaimed "guru" that said RP was the only treatment he would need. He now also has a "detectable" PSA. Since I don't believe you were born with 10 prostates I would suggest getting with a radiologist. If you're immediately worried about rising PSA, you might want to consider ADT. Scarey, of course, but you need to go somewhere else to check out your options. Your currrent physician obviously does not have the answer. You can also research doing nothing medically and going on a special diet which has kept the PSA levels down for many men. As far as your comment "What could explain this phenomenon?" you have to remember the first rule of prostate cancer is that "there are no rules". I wish you well in your research of treatment and keep googling and dogpiling until you see something that you and a trusted medical professional can agree upon.(It took me weeks of typing in every related term I could think of and I still could not find a case scenario that "fit" my disease.) If you don't get an answer from a medical specialist you think important to your situation then find another!
Re: Re: Explanation for nondecrease in PSA despite prostatectomy?
I agree with Patrick. Get a radiology and medical oncology consult.
If there was extrcapsular penetration (this means the cancer was outside the prostate) then there are still cancer cells there.
Not all "aggressive" cancers give off a lot of psa. My husband's psa was only 4.2. He had a gleason of 8 and a very "aggressice" cancer.
Had RP in April of 2004. Had radiation in January of 2005. PSA is still climbing. We have a medal oncology consult this Wednesday.
Every case is different That is for sure.
I am a nurse and I think this is one of the hardest cancers to treat.
One thing for sure YOU CAN'T LET IT GET YOU DOWN!!!!!
Believe it or not there are people worse off.
Get those consults and keep us up to date.
This is a good site.
Best of luck.
Roberta
Re[3]: Explanation for nondecrease in PSA despite prostatectomy?
Thanks, Patrick and Roberta, for taking the
time to reply -- I appreciate it.
My question is very elementary, and I wonder
how I can phrase it any more clearly:
What is the EXPLANATION for the phenomenon?
(Or, better: What's the most likely explanation,
and what were the premises and reasoning used to
determine that it is the most likely?)
Patrick said that I obviously have some prostate
cells that are still making PSA. This is not
obvious to me; that's why I ask the question.
He also said that there are no rules; I agree
that there seem to be few or no black-and-white
rules, but there are plenty of statistical and
probabilistic ones -- that's why anyone ever
chooses one treatment over another, or perhaps
chooses to forego treatment altogether.
Other cells (bladder, urethra) routinely produce
PSA in small quantities; perhaps my nonprostate
PSA-producing cells are unusually numerous in
this regard, or unusually productive of PSA?
The idea of nonprostatic cells producing PSA in
quantity is far-fetched, of course; so is the
idea that I have multiple prostates. (But it's
not entirely ridiculous -- I was a twin in the
womb but not at birth, and there are plenty of
cases of one twin prenatally "absorbing" organs
from another, most usually hair and teeth, as
a teratoma. The most sensational, but rarest,
cases of prenatal competition for shared organs
are those of conjoined twins, where neither fetus
completely loses the competition.)
But my point is: Why should anyone reject this
far-fetched explanation, or any of my other five
far-fetched explanations, in favor of a competing
far-fetched explanation -- namely, the notion
that for nearly two years, almost all of my PSA
was being produced not by my prostate itself
(which was found to have a significant bump of
cancer on it), but by extraprostatic PCa cells
that are invisible to bone scans, CT scans, and
PET scans? I don't find such an explanation to
be "obvious", merely plausible and far-fetched.
And I'm not keen to subject myself to further
damaging treatments without someone at least
paying attention to the other possibilities.
I know I'm a layman, and therefore that I'm
likely to have some ridiculously wrong ideas
based on ignorance and out-of-context reading.
I accept that. And I have no problem learning
why my theories are ill-founded. My problem
comes from the fact that they are not even
heard and addressed.
Any thoughts? Am I being unreasonable to insist
on knowing the (tacit or explicit) explanations
before opting for any particular treatment?
Re: Re[3]: Explanation for nondecrease in PSA despite prostatectomy?
Paul,
My husband, John's psa has been rising for the last 3 times (he has it checked every three months0.
From everything I have read, this means he has cancer cells somewhere.
He is 63 years old (was 59 when 1st diagnosed in April 2004).
He looks "gret" and feels good. All scans are negative and he has "NO" symptoms. Came through his surgery and his radiation with no problems, except he can't eat a lot of dairy products or sweets (causes diarrhea).
In short, he is fine but looks "BAD" on paper. The rising psa.
The psa is the only thing the doctors have right now to monito if the cancer is recurring before you have symptoms.
From what I've read the psa can rise quite a while before you actually experience symptoms.
Every case is different but I'd definitely get an opinion from a radiology and medical oncologist.
I'm no expert but I do try and read everything I can. John is my best friend, as well as my husband.We've been together 38 years and I plan on keeping him with me and in the best health I can.
Hope this helps.
Roberta
PS If you had another prostate they would have noticed when you had surgery. I work in surgery and have seen a lot of RP's.
Also, the prostate is the only gland that secretes psa.
Re[5]: Explanation for nondecrease in PSA despite prostatectomy?
Hi Roberta, and thanks again.
I'm also very glad to hear your husband is
doing well -- he's lucky to have you as an
involved and caring partner.
So far as I know, my PSA is NOT rising.
That's why I get so frustrated when my case
is lumped together with those of men whose
PSA goes to near-zero and then starts rising.
That is the typical clinical picture, and it
seems to have nothing to do with my case;
that's what prompts my search for explanations.
A rising PSA does not necessarily mean a person
has prostate cancer; it simply means that a
person has more and more cells that produce PSA.
Prostate cancer is one excellent explanation of
the phenomenon, since it means more and more and
more prostate cells are coming into existence.
However, I know several men who have rising PSA
but repeatedly negative biopsies. They are all
said to have BPH. (Of course, they *might* have
cancer as well as rapidly enlarging prostates,
with no cancer turning up on repeated biopsies.
Both explanations are plausible.) For men who
still have prostates, unlike your husband and me,
a rising PSA is more likely to be age-related
or BPH-related than PCa-related.
I'm searching for the best explanation -- or
even a decent one -- for my different picture.
My PSA was nearly unaffected by surgery, with
no indication (yet) that it's on the increase.
So far, I've not encountered any comparable
case history, and I've not encountered any
explanation that is well-supported by facts
and physiology known to me (well aware that
I lack the knowledge and experience of a
medical professional).
Best to you and your husband,
/Paul
P.S. I'm not really very serious about the teratoma
explanation, but I would point out they can be found
anywhere, not just in the locus of the healthy
twin's corresponding organ.
Also, there are numerous documented cases of non-prostate
cells that produce PSA. I'm not claiming to have a Skene's gland
or anything, but take a look at this PDF file:
http://www.ihcworld.com/_newsletter/2005/2005-09_Prostate_markers.pdf
> There are a few other tumors and normal structures that may
> express PSA, including breast carcinoma (~9% according to one
> study), some salivary gland tumors (particularly mixed tumors and
> salivary duct carcinoma, the latter sometimes presenting with
> metastatic disease), anal glands in males, urethral glands,
> urachal remnants, areas of cystitis cystica or cystitis glandularis,
> and Cowper's glands. PSA has also been reported in 36% of
> nephrogenic adenomas of the prostatic urethra. Rare carcinomas
> arising from the posterior urethral glands (Skene's glands) in
> females express PSA (as well as prostatic acid phosphatase),
> and there are reports of PSA reactivity in villous adenoma and
> adenocarcinoma of the bladder, as well as Paget's disease
> involving the male external genitalia.
<--------------------------------------------------------------------
Re: Explanation for nondecrease in PSA despite prostatectomy?
Paul,
Your case is certainly an interesting one and I’m pretty certain there is no definitive reason that can be advance – as Patrick says the one rule about prostate cancer is that there are no rules.
I was surprised to see that your PSA test was so soon after your surgery – you say “a few weeks” – but don’t mention if you have had any further tests since May and if so what they were.
If you had posted your query in May soon after getting your PSA results I would have said that the most likely explanation was simply that there was PSA still circulating in your system following the surgery. It is for this reason that most doctors do not take a PSA test for at least three months after surgery – it is only then that the test will accurately represent the outcome.
Of course if your PSA tests are still showing similar results, then that theory goes out of the window, but please tell us what the series of test you have had since your surgery show.
Re[2]: Explanation for nondecrease in PSA despite prostatectomy?
Hi Terry, and thanks for your interest in this.
Yes, the first post-RP PSA test was early, and was repeated a week later with similar results. Below is a chronological history of my PSA readings to date, most recent first.
PSA values before prostatectomy:
4.6 on 2007-09-25, per hospital (32 days post-RP)
4.7 on 2007-09-18, per hospital (25 days post-RP)
RP done 2007-08-24
4.56 on 2007-05-21, per urologist (different lab)
5.2 on 2007-05-09, per GP, lab#2 (Hybritech)
1.3 on 2005-05-20, per GP, lab#1(?)
0.8 on 2004-01-15, per GP, lab#1
0.9 on 2002-04-19, per general practitioner, lab#1
In other words, my PSA values this year have been:
- May 2007: 5.2 and 4.56 (different labs)
- Aug 2007: Prostatectomy
- Sep 2007: 4.7 and 4.6 (same lab, ~1 month post-RP)
I'm will certainly want to see another PSA reading or two before making any life-changing treatment decisions. Also, the HAMA possibility cited by Ted Coxhead looks very interesting (see parallel thread).
Re: Explanation for nondecrease in PSA despite prostatectomy?
At last someone with my story! My PSA from 2000 to 2006 wandered up from 1.5 to 2.64. November 2006 TURP (urodynamics showed obstruction), biopsy showed Gleason 3+3 less than 5% of 2 needles of 13.
PSA Feb 2007 0.99. Up to 1.18 June 2007.
June 2007 20 needle second biopsy. showed 2 areas of less than 2% Gleason 3+3.
July 17 PSA 2.75 (6 weeks after saturation biopsy)
August 21 2007 RRP with top UK robotic Professor.
Post op pathology Clear Margins, no SV involvement, no lymph node involvement. Gleason confirmed at 3+3. No capsular penetration. Pre-op bone scan and MRI negative.
Post op PSA at 6 weeks 1.58!
So like Paul I wonder how my 50 gram prostate with 4 tumours with a volume of 0.3cc Gleason moderatley well differentiated gave off 1.75 PSA before the op and getting reid of it all I still show 1.58.
My Prof says it's because due to the TURP he had to leave some benign tissue.
But Walsh amongst others says that 6 weeks is too early in some cases to test PSA. Should be left for 3 months. So that is what I'm doing.
There is however some interesting literature about persistently elevated PSA after ops that were regarded as completely succesful. It seems that the assay can be interfered with by Hunam Anti Mouse Antibodies. It seems that you can have anti bodies in your blood from having kept rodent pets or recent vaccinations or just from across the placenta whilst in the womb, which will skew PSA blood tests.
If my next one is higher than the clinical scenario suggests it should be in my case, then before I decide on any further treatment I am going to test for HAMA. If your blood does have these antibodies then the PSA assay must be treated for them or use a GOAT based polyclonal detection antibody.
The articels were published in LABMEDICINE, Vol 37 number 8 August 2006 and The Japanes Urological Association in July 2006. The authors are Sangtae Park, J A Cadeddu et al.
Re[2]: Explanation for nondecrease in PSA despite prostatectomy -- HAMA?
Wow!! Thanks, Ted, for your excellent sleuthing!
I took a look at the URLs you mentioned
http://www.labmedicine.com/2006/Issue_08/1001241.pdf (PDF: Park, Cadeddu, et al., 2006
http://www.blackwell-synergy.com/doi/pdf/10.1111/j.1442-2042.2006.01648.x (HTML: Park, Wians, and Cadeddu, 2006
and I think you may be onto something. Speaking for myself, it's not implausible: my family have had mice and rats as pets at various times, although not recently.
If the explanation for my anomalous PSA is indeed HAMA interference with the assay, it validates my instinct to request a deeper dive into more sensitive lab work before proceeding with any further life-changing treatment. (I only wish I had requested the lab work before going in for four different imaging studies at a thousand dollars or so apiece.)
Ted, you're diligence is a godsend to me. Let's keep in close contact as we work this with our physicians on opposite sides of the Atlantic, and share whatever we find.
Re: Explanation for nondecrease in PSA despite prostatectomy?
Re my post about possible interference with the PSA assay due to HAMA and other animal antibodies that sometimes occur naturally in the blood, here are the web links to the articles that deal with this.
Isee from their website that Quest Labs in the USA offer a post RP PSA test that contains HAMA treatment. Here in the UK Quest do not offer this.
Re: Re: Re: Explanation for nondecrease in PSA despite prostatectomy?
Thanks,Terry. I should just clarify that before I look for this HAMA sensitive test in the UK, my first step will be to have another conventional PSA test done at the same lab which did the first one at 6 weeks post op. Walsh and others insist that the first post op PSA test should be no earlier than 8 to 12 weeks.
I think the reason for this is that no-one is absolutely certain what the half life of PSA is and whether it varies between individuals.
There is also literature which shows that PSA massively increases during manipulation of the prostate by biopsy, TURP or excision and can increase 20 to 50 times. If that is true and if the half life can be as much as 5 days, it would justify waiting longer than 4 to 6 weeks before the first post op PSA test.
I guess I shall soon know. But I think when a person is categorized as a "low risk" which is confirmed by the pathology (and when your uro wakes you up after the op and says "Relax - you're cured" and his nurse tells you to open a bottle of Kristal when you get home, yet your first PSA at 6 weeks is virtually the same as when you had a 50 gram prostate with 4 tumours in it, you can say this is contrary to the clinical scenario!
In that situation, before risking new morbidities, I think it best to check our premises and look over the info we have. In my case a second opinion from a leading uro said before my op that I could easily watch and wait and having an op was a 50/50 decision for me.
My feeling is that if it wasn't a rush then, I'm not going to be rushed now.
Re: Explanation for nondecrease in PSA despite prostatectomy?
Ted,
You are absolutely correct in all you say. I just wish that all men were as phlegmatic as you - and that the medical world was more circumspect in both the urging of immediate treatment and the early pronouncement of "cure".
I'm sure we're holding thumbs for an undetectable result after the stautory 3 monthd waiting period.
Re: Re: Explanation for nondecrease in PSA despite prostatectomy?
In the course of my wanderings around the Net I cam across this piece by Dr Arnon Kronstad - The Major’s PSA.
As you will see Dr Kroinstad relates the story of one of his patients with a high PSA after surgery as follows:
" The Major had a slow stream because of a scar at a suture line. When radical prostatectomy is done, the prostate is removed from between the bladder and urethra. The bladder is then sewn back directly to the urethra. Here, a scar forms, at times so dense that it interferes with urination. Under anesthesia, I incised the scar, which would fix the problem. I promised a smooth course. I was wrong.
"A few days after the urethral scar incision, the Major saw his internist. A PSA blood test was ordered. That's when he called me in a panic: “The PSA is 4.6 ng/ml – the cancer is back!”
"It took all my effort to persuade the Major that his alarm was false. It took a lot of hand waving and explanations. I had to teach him the fundamentals of PSA: It is not prostate specific. I assured my marveling Major that as the urethral incisions healed, the PSA in his blood surely was produced by non-prostatic organs and would drop again, which it did."
I mailed Dr Kronstad giving him the gist of your conditions and asking him if he had any comment. He said in part
“In the early weeks after surgery, if things are not well healed, then PSA from the glands of Littre and glands of Morgagni can leak into the serum. This PSA would have nothing to do with cancer.” And then went on to say
“……I'd send off a urinalysis and culture (UTI – urinirary tract infection can likewise can cause "leakage" of PSA) and then wait for any residual inflammation to disappear before re-testing the PSA.”
Re: Explanation for nondecrease in PSA despite prostatectomy?
Thank you very much for your detective work, Terry. The point Dr K makes about residual inflammation rings a lot of bells in my case.
In an earlier post you said that we learn something new about this disease every day. Today I learnt that the PS part of PSA may not be as PS as we had all thought!!
Re: Re: Explanation for nondecrease in PSA despite prostatectomy?
What an extraordinary thread this is to read, but it's been 11 days since the last reply. Paul, Ted, any more news?
Perhaps we won't hear anything from you two until your next PSA results.
Thank you all for participating, fascinating subject.
Ralph
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?
Ted,
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 http://www.prostate-cancer.org/tools/software/tumorvol.html
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.
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.
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.
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.
