Creeping PSA

I have done two recent PSA which read a .3.

The Doctor is prescribing an MRI, Bone Scan, and then a biopsy of the fossa.  with the possibility of radiation treatments. (My feeling is that once down this path the chance of NOT being radiated is 0% and being radiated 100% with or without the tests!

My prostatectomy was in 1997 with no additional treatment (and also a participant of the casadex study)and subsequent PSA have gone from neglible to a .3 and that seems to be the incentive for these tests.  Has anyone received a "Creeping PSA diagnosis?" and what did you do? Or what was the point at which the Doctor took 'action?'  What questions are relevant to be asked or to get information about? 

I recently broke up with a lady friend-so does sexual interest affect my PSA? or does my PSA affect my sexual interest?  

And I hate to say but I think that the tests are motiviated by facility costs rather than actual concerns about MY situation/and CYA concerns as well.  

Any thoughts/questions/and knowledge would be most appreciated.

BARR

Welcome Barr, dale is quite right, would need some more information and a little clarification to help you better. Hope you hang around and stay with our PC brotherhood. Great place to be, great place for information and support.

David in SC

I do grow weary of the continuous suspicions of some people against doctors, tests, medical faciloities, etc. Like some giant conspiracy theory. If someone feels that strongly against all of that, than just don't go, see if you can heal yourself. Most doctors, not all, are highly educated, up to date, caring, and are looking in your best interest. They are not working against you, that would be self defeating. That has been my experience at age 57 having gone through a hell of a lot of major medical maladies since age 28.

In BARR'a original post above, the tests mentioned would be all considered normal and typical for what very well could be reaccurance after his surgery. A post surgery psa of .3 would be considered serious by most doctors and oncologist that I personally know.

The fact that the surgery was 12 years ago, and now there is a rise to that level, is a good reason to be concerned. That was a long period of remission, if that is what it is indeed.

The thing that doctors and nurses hate most of all (and I am married to a nurse) is non-compliant patients or patients that think they are more educated than the doctors. Not suggesting that we buy everything we are told at face value, there are ways of cross checking information and suggestions, but at some point, you have to trust the experts, or you are on your on.

David in Sc

Purgatory,

I agree with the underlying basis for your post. On the whole, our American medical community is the finest in the world.

As we read these posts, we are dealing with second and third hand information, so our interpretations can be skewed because the patient tells us what he thought the doctor said.

Most of the time, after he says "you have cancer", we don't really hear much more of that whole office visit.

On that basis, I think a second opinion for our own understanding is a good thing, not that the doctor is bad. Secondly, we all freely admit that surgeons fairly routinely recommend surgery, and radiologists recomeend radiology. I have been to all of them in my quest. I saw a top prostate oncologist at U of M besides the 2 surgeons, and a radiologist. Each one added another piece to my understanding.

I will certainly admit there are some regular posters on this site who are fairly suspicious of the advice they have received. Some for good reason, most for no reason, or some that haven't heard the answers they want, that they will be fine and cancer free for 20 years.

It really is a process we all go through to arrive at an answer we can be comfortable with, not necessarily an answer that is any more correct than one someone else has arrived at. Probably none of us are 100 % right, but probably not 100 % wrong either.

I'm not sure even time will tell.......

goodlife,

It is an assumed given, that a urologist/surgeon is going to suggest surgery, and if you went to a radiation oncologist first, they would suggest radiation. A well performed biopsy with a good pathologist reading it, still gives any us a foundation or basis for our cancer. And even if all of that is performed to the best of ability, it is still an estimate at best, a base point. And from that base point, we have to wade through a plethora of information: from books, the net, friends and family, medical pros, etc. When it becomes hard, is when it is insinuated or implied that the resullts will be about the same regardless of the primary treatment chosen.

As we all know, no treatment comes without its costs in terms of quality of life issues, it's kind of like the classic question, do you want to be stabbed with a knive or shot with a gun? Both hurt.

Going back to biopsies, people have to remember how random it can be, unless you have the more thourough satuation biopsies. I believe my cancer was well in place in my original biopsy 1 1/2 years before my dx. came in. The first biopsy just didn't poke the right area at the right time, and bingo, no cancer found. My point, our biopsies are just a starting point, I worked on the premise in my mind, when the 3rd one found the cancer, that there probably is more, and in the end, after surgery and the final pathology report came in, there was much more, and it had been there awhile.

Some of the attitude I pick up in here is to be expected, that is in classical denialism. It's very much a human nature thing. In denial, one can assume the appearance of being diligent in looking for the correct medical solution to their cancer, but in reality, they are looking for every possible excuse to disprove the obvious,and the facts at hand. In my lone opinion, that non-productive, and can lead to needles delays, and at the extreme, worsen the person's chance for containment.

David in SC

David,

I agree with most of your last post. What I have found in my 10 year journey is that most urologists radiologists, and surgeons don't really understand PC and all it's varients. Most patients take their word as gosple, because they think he is an expert and don't question anything. They do everything from bladder, ED issues and many other things. The good ones may see 50 to 100 PC patients a year. Most are excellent surgeons or radiologists, but they don't specialize in PC and don't specialize in advanced PC. There is a world of difference in a doctor that only specializes in PC and has seen ALL treatments in ALL stages for tens of thousands of PC patients. The knowlege of about what test to perform and what tests are reliable and what treatments work is based on a lot of knowledge from seeing thousands of surgery and radiation patients, and a diagnosis is composed of the totality of many pieces of information, not just a biopsy and psa.
The radiologist who did my seeds and the one who did my IMRT are excellent radiologists, but all they saw was a G4+3 with a PSA of 40 and a bad prognosis. When I explained all the other information that I had, they had never even heard of half the tests. My surgeon at least heard of them but was unfamiliar with what they were, and he was trained by Sardino at Sloan Keterring. He was trained to cut and that's what he believed in. He's an excellent surgeon, but a poor diagnostician; all PC roads led to surgery. None of my doctors knew how a transition zone tumor acted biologically. My oncologist knew.
We continue to believe just because one is a good PC surgeon he knows everything about reoccurrances, micromets, advanced PC and diagonostics. It took me 9 years to figure out how little they really know.
I'll use a surgeon to operate on me and a radiologist to radiate me, but I won't use them to diagnose me if I have a reoccurrance.
PC is the only cancer left of all the other cancers in which the surgeon provides the diagonsis and recommends treatment. If you see a surgeon for breast ca or any other cancer you will always be referred to an oncologist not another surgeon. What have they learned that we haven't.
Also there is no way that a bone scan is going to show anything with a psa of .3; PC migrates to the prostate bed then to the lymph nodes then to the bones. By the time it reaches the bones it would be generating a ton of PSA unless it is a very rare varient.
JohnT

JohnT,

You did bring up a good point I can relate to first hand. I have been through 3 bouts of the ultra rare porocarcinoma. I have been clear now, after 5 surgeries, including 1 extensive bout of plastic surgery to my scalp. At the time, I was one of only 38 known cases in American medical history. My surgeon did the right thing, on the last bout, he refered me to one of the best radiation oncologist in my state, and by sheer coincidence, he had one other patient, female, with the same ultra rare cancer. So with 2 of us, kind of made him the expert, and both our cases have been used in researching that strand of cancer. They can only guess an origin, but in my case, I was exposed to lots of formlyahyde when I was a machinist back in my early twenties, which is very dangerous from a cancer vantage. The point, my surgeon knew he was out of his league when the pathology came back. Even the American Cancer Society had never heard of that cancer or had any record of anyone with it. So yes, John, one can't be an expert in everything, regardless, that includes doctors, surgeons, and even specialists.

David in SC

Good Morning Barr,

Just got here and noticed your post. You have a couple of questions and so I will give you my take from what I have read about recurrence of PCa.

Most doctors will consider a 0.2 a biochemical relapse after surgery, some 0.4. With yours at 0.3 it would be something that should be investigated or at least watched. The MRI will look for suspecious lymph nodes for enlargement or any other signs of abnormality. The bone scan won't show any disease progression at the 0.3 mark but will be valuable as a base line in case futher scans would be needed. The biopsy honestly I don't understand at this point. Unless they can feel something on the DRE to target the biospsy needle, to me it would be more like a shot in the dark in finding anything.

Bottom line with the numbers and length of time since surgery, yes it is something that needs to be monitored. JohnT said earlier that there are a host of other tests that can be done to establish if the recurrence is local or systemic. But that would need to involve a prostate ocologist that specializes in PCa. The reason for determining if the disease is local or systemic will establish which treatment would be best, including doing nothing at this point.

Good luck and welcome to Healingwell

Thanks Les... concise and to the point...
Can I get some information regarding other tests marking systemic or local? And treatments? Radiation is not the only treatment?
And the point is well taken that an oncologist specializing in PCa might have a better fix on this than my surgeon..So anyone know who that might be - in Philadelphia? I am presently involved with HUP with this so maybe someone from somewhere else? For a second opinion.

I just feel as if I have to slow this down. Also involved is the fact I will be moving from Blue Cross to Medicare in October. so there is cost factors involved as well.... though not to the point where my ultimate health is concerned. Is speed a concern?
Again - can anyone say what affects a PSA score? .
Much thanks.
Barry

Barry,
After prostatectomy, PSA will only rise with th presence of prostate cells. There have been recorded cases of PSA rise in very small amounts below 0.1 but rarely above that number. Unlike when we still have our prostates when sexual or physical activity or infection can cause jumps in PSA. That stated, you need another PSA test to verify if there is an upward trend...If so, a visit to the radiaologist is not a bad idea...

Tony

Barr, My recurrence was a lot faster than yours. about nine months post surgery PSA has began rising. I started to be concerned with PSA at 0.13, when next test showed 0.17 I decided to act. (By the time I talked to a couple of doctors and chose a treatment plan, my PSA was 0.27). Your PSA velocity is a LOT slower, so you can take some time to decide what to do. You PSA numbers do look a bit strange, going up and down like this. Is this all from the same lab? Also, can you share your PSA stats post surgery and from your annual tests? This will tell a lot about the dynamic of your disease. If it has been around 0.3 for years maybe you don't need to do anything other than active surveillance?

I've been lying in the weeds , so to speak, reading all of your posts here which have been extrememly helpful to me post surgery. I've been meaning to jump in and join, just haven't taken the time to register. But I wanted to suggest to BARR, that an option for an oncologist who specializes in PC close to Philly would be Dr. Stephen Grubbs of Christiana Medical Center in Newark, DE. I consulted him prior to treatment, and w/o a dog in the race, he validated the process by which my wife and I reached our treatment decision. He also pointed out some other considerations to watch for since the female side of my fanily has been beset with breast cancer......he's knowledgable, easy to talk to, and it sounds like you're within driving distance. Now that I'm out of the forum closet, I have a few topics I'd like to weigh in on, especially since there may be more guys like me in the Mid Atlantic region who are looking for MD's options, etc.---------hope this helps first time out of the shoot!

ggggggggggggrrrrrrrrrrrrrrrr
neither options are likable... what is life without a libido, and my boner - my home grown boner.... and incontinence !!! Geezzzz that's nice.
I can see where you get depressed... pissing all over yourself because your dick won't see the sky ever again! quality of life ! ? versus quantity ....
I will get back to you...