Eleven years ago today was my first full day as an "official" prostate cancer survivor. I had received my biopsy result the preceding afternoon, and the results were not good: following that PSA (first ever) of 113.6 that triggered this journey, the biopsy revealed all cores were positive, most with 100% cancer, and with a Gleason of 7 (later upgraded by an expert from 3+4 to 4+3=7).
Back then a great many doctors did not know good ways of treating advanced cancer (many still don't, especially urologists). Within a month I had obtained second opinions from respected doctors at the City of Hope (outside LA in Duarte) and at Johns Hopkins; both urologists answered my request for a prognosis, under best treatment, with survival estimates of five years: three good years and two declining years.
Surgery, which in ignorance of the dire challenges in my case I had requested, was bluntly ruled out , and the odds of success for radiation were pretty low . I had started Lupron (December 20, 1999) to try to slow the cancer down and as preparation for whatever treatment would follow.
I look back on where I've been and where I am now with amazement and profound gratitude! In a gradual education process, I elected to rely on triple hormonal therapy alone, supported with lifestyle tactics (nutrition/diet/supplements, exercise, and stress reduction) and a bone density rebuilding program. I have now completed two full cycles of triple blockade, achieving a nadir of <0.01 both times before taking a vacation and discontinuing the heavy duty drugs (Lupron and Casodex), and achieving more time off-therapy than on. I achieved a nadir of .02 for this last (third) cycle, and I'm now starting my nineth month off therapy; based on the slow rate at which my PSA is climbing, I should be on vacation for quite a number of additional months.
As on the previous two cycles, side effects were essentially gone at about the three month point, and I now have virtually the same high quality of life that I enjoyed in the years prior to being diagnosed. That prospect too would have been unbelievable to me eleven years ago. (My overall health is in better shape than it was eleven years ago, and even my bone mineral density has returned to the normal level.)
I am especially grateful to the courageous, visionary, pioneering medical oncologists who have blazed the trail for effective and tolerable hormonal therapy.
We see a lot of bad news on this board, which is natural, but we also see some good news, and today I want to add to that.
Jim,
Congratulations and keep it going. You are not only an insperation to us but also one of the leaders of solid information and hope for all including us 9'S.
Congratulations, Jim. You're setting new records every day. Ever thought about writing a book yourself? I know there are a lot of people who would be interested in reading it.
- Allen
Well done Jim, I would wish you good luck but you dont need it as you are making your own. Agree with TA re a book on your experiences.
Good luck anyway, some more wont hurt.
david
Jim, your story is truly an inspiration to all of us who need that kind of hope. Our GP told us about an 84 year old man who stopped responding to hormone therapy after only 3 years. Another doctor told us that everybody responds to hormone therapy differently and I guess that has to do with how much hormone refractory cancer is present. Have you learned anything about this? Why do some respond better and longer to hormone therapy?
In any event, as you know, Irv has had the surgery and is dealing with the side effects. Also, because of his stage T3B, it will, most likely, be recommended that he goes through adjuvant radiation therapy. If I only had a crystal ball and knew that Irv would respond as well as you to the hormone therapy, it really sounds like a good alternative. Unfortunately, we never know what tomorrow brings and we all hope we're doing the right thing. For Irv, at 51, the goal is to try to cure him, despite the apparent odds. Hopefully he'll keep up with his positive attitude. That can't hurt.
Congratulations on your successes and may you experience 11 more successful years...and then some. Keep kicking *** with that prostate cancer monster.
Hi Jim,
Congratulations on your anniversary. You really have done it the right way against all odds. Many of us got inspiration in your case. Hope you get many more on/off periods to break all barriers of diagnosis.
Merry Christmas.
Baptista
That's great news! I guess you showed those doctors that only gave you five years.
I hope you continue to do great things with hormone therapy. It's an inspiration to all of us that are looking at the possibility of hormone therapy sometime in the future.
If and when I have to go on hormone therapy, I would rather have you treating me than my current oncologist. How's that for having confidence in someone?
Jim: Great news, Hope you have continued success. I think everyone on this board would agree that you are a world of knowledge to us all. Hope you have meny more months of vacation. Have a Merry Christmas & A Happy Healthy New Year. Rich
Hi Allen and everyone participating in this thread,
Thank you for your kind and encouraging responses! I'll do my best to keep it up!
Allen, you wrote in post #3:
Quote:
Originally Posted by Tall Allen
Congratulations, Jim. You're setting new records every day. Ever thought about writing a book yourself? I know there are a lot of people who would be interested in reading it.
- Allen
I have thought a little about writing a book, but there are several great books already out there, and I'm not sure that there would be that many book buyers for a book about becoming empowered as a prostate cancer survivor while finding lots of flaws in the system as well as wonderful but nearly hidden gems.
I'm responding to your post #5 about the prospects for hormonal blockade. As usual, I'll insert some thought in green in an excerpt from what you said. I'll repeat my thanks to you and all who have expressed such kind and warm thoughts.
Quote:
Originally Posted by srhonda61
... Our GP told us about an 84 year old man who stopped responding to hormone therapy after only 3 years. Another doctor told us that everybody responds to hormone therapy differently and I guess that has to do with how much hormone refractory cancer is present. Have you learned anything about this? Why do some respond better and longer to hormone therapy?
So many doctors have a grossly inadequate understanding of hormonal therapy, and it's not limited just to general practitioners, who have a fairly good excuse that they are not specialists who should no better. Even highly respected prostate cancer surgeons, like the legendary pioneer Dr. Patrick Walsh of Johns Hopkins does not really have a sound grasp of hormonal therapy.
The response time, as I see it, depends mostly on the nature of the cancer at the time of hormonal therapy, the kind of hormonal therapy, and whether it is soundly delivered. (Side effects depend on the person, on the nature of the hormonal therapy, and on the use of countermeasures.) Unfortunately, hormonal therapy often does not work well in men with widespread bone metastases, especially if they are painful; it seems to work somewhat better in men with widespread bone mets without pain; and it appears to work with increasing effectiveness as it is applied to earlier stage disease - few bone mets, no bone mets, and no mets at all. It is quite possible that that 84 year old man your GP mentioned was a patient with very advanced disease. However, it is really uninformative, misleading and confusing for a doctor to tell you something like that without identifying the stage of the disease and the kind of blockade. I'll give the GP a pass as we can't really expect him to know the ins and outs of hormonal therapy.
As to the kind of hormonal therapy, accumulating evidence suggests strongly that combined therapy is going to be superior to single therapy for many of us. Often, these days, that means an LHRH-agonist (such as Lupron or Zoladex, the latter scheduled to go generic shortly, or surgical castration) plus an antiandrogen such as bicalutamide (now thankfully generic so that the price has plunged from what we used to pay for Casodex). However, many doctors are still prescribing only one drug. I'm convinced, partly based on my own dramatic results, that adding a third drug - a 5-alpha reductase inhibitor, either finasteride (generic) or Avodart, will be the straw that breaks the camel's back for many of our cancers. This triple blockade combination first halts the production of testosterone produced by the testes, then muscles out most of the remaining testosterone (produced indirectly using products of the adrenal glands) from docking to the androgen receptors on the cancer cells, also blocks androgen receptors so that docking of DHT is reduced, and finally sharply reduces the conversion of any remaining testosterone to the far more dangerous DHT. (The Primer, Beating Prostate Cancer: Hormonal Therapy & Diet, and Invasion of the Prostate Snatchers all do a good job explaining how all this works.)
From participation in these electronic discussions and from listening to talks by doctors, I've learned that many doctors do not understand that it is important to deal with DHT as well as testosterone. So many doctors really do not have a clue! You probably will be able to assess a doctor's level of savvy about this pretty easily: just ask him whether DHT is important in hormonal therapy. If he doesn't confidently assert its importance, he isn't very savvy about hormonal therapy.
Sound administration and management of hormonal therapy are also vital. The experts I follow advise that about 10% of men on hormonal therapy will not get much benefit because the therapy is poorly administered or because their own biology eliminates the dose too rapidly and this is not effectively countered. The key to success here, if there is any delay in driving the PSA rapidly down to <0.05 (may take a few months; Dr. Myers would like to see the PSA driven to <0.01), is monitoring at least the testosterone level, and it's wise to also have the DHT level monitored. (Some other hormones, LH for example, may also be monitored.) If testosterone is 20 or higher, that's a sign that there may be a problem if the PSA is not extremely low. (Fifty used to be accepted as the success cut-off, but accumulating evidence has many experts convinced the level needs to be around 20 or lower.) I don't recall the desired figure for DHT, but it's in the teens or lower. So many doctors neglect to monitor either testosterone or DHT, nor do they do an ultrasensitive test that will show whether there is a problem! Conventional PSA tests that measure to <.1 are simply blind to the key evidence, which lies below that level. I heard one leading expert say recently that he thinks it's "criminally negligent" for doctors not to monitor patients with ultrasensitive tests. I recently heard one of his fellow-medical oncologists, who treats many prostate cancer patients locally, say that he does not see the value of using ultrasensitive tests. (He strikes me as a kind and decent man, probably with some good talents as a doctor, but you won't see me in his office!)
Problems in administration include improper mixing of ingredients (not hard, but needs to be done right - you can read the directions at the US Government's FDA site), improper storage (temperature), injection of the "bolus" into fat instead of muscle, and having the coil (for Zoladex) work its way out of the skin. When I get an injection from someone new to me, I tactfully talk to them first to make sure they know what they are doing, and I try to discreetly watch to make sure the Lupron is being pre-mixed correctly.
I'm repeating the second part of what you wrote to give it special attention:
Quote:
Another doctor told us that everybody responds to hormone therapy differently and I guess that has to do with how much hormone refractory cancer is present.
There are differences in how each of us responds, but that thought should be in the context of broad commonality of success for soundly used hormonal therapy. The physicians who have pioneered advances in this therapy confidently expect that a large majority of us will achieve a drop in PSA to at least below 0.05. In fact they use failure to achieve that, under triple blockade, as a key diagnostic clue indicating unusually aggressive disease that requires a switch in tactics or additional tactics. (Meanwhile their unenlightened colleagues blissfully let prostate cancer in such patients advance unchecked.)
Those leading expert doctors fully expect that most of us, who achieve the desired drop in PSA, should respond to hormonal blockade for either around ten to eleven years or even indefinitely long. (Meanwhile their unenlightened colleagues are scaring their patients by telling them that hormonal therapy will only work for about a year and a half to three years.) The experts will inform us that second and third line hormonal therapy, which is used should the first line stop controlling the cancer adequately, will work for additional years. (Meanwhile, many of their unenlightened colleagues will not even be aware of second line therapy, or they will know only about obsolete forms of such therapy.)
Yes, ultimately the extent and growth of hormone refractory prostate cancer partly determines how we will do, but that is far from the main theme in the story for many years for most of us. I can't help thinking that if I can do well, considering my awful situation at the start, then a great many of us with much less advanced cancer should do as well or better. While I'm now at the eleven year point, I should be at or near the twelve year point when I need to go back on therapy, and I won't be refractory at that point. Based on my success this time, achieving a nadir of 0.02, I have a good shot at responding well again, and that would likely put me around the fifteen year point, still on first line hormonal therapy. Moreover, every year progress is being made toward making refractory prostate cancer again responsive to hormonal therapy. That has already happened for some patients with some drugs and drug combinations. The trick is to prove approaches that work for most patients.
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In any event, as you know, Irv has had the surgery and is dealing with the side effects. Also, because of his stage T3B, it will, most likely, be recommended that he goes through adjuvant radiation therapy.
More and more, early radiation is recommended for men with some risky features after prostatectomy. Until this week, I thought it was safe (and standard) to wait until the PSA neared 1.0, but being sure to get the radiation before that. I just learned that "the earlier the better" may be best. I'm thinking it's still wise to wait until the patient recovers from the prostatectomy.
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If I only had a crystal ball and knew that Irv would respond as well as you to the hormone therapy, it really sounds like a good alternative.
My hunch is that well-done hormonal therapy, especially intermittent triple blockade, is a sound option. However, I doubt that research can support that view at the moment. Adjuvant radiation, probably with a couple of years of hormonal therapy in support, is probably the standard as of now and a good choice.
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Unfortunately, we never know what tomorrow brings and we all hope we're doing the right thing. For Irv, at 51, the goal is to try to cure him, despite the apparent odds. Hopefully he'll keep up with his positive attitude. That can't hurt.
Congratulations on your successes and may you experience 11 more successful years...and then some. Keep kicking *** with that prostate cancer monster.
Regards, Rhonda
All we can do is do the best we can with what we know at the time. My feeling is that your husband still has a decent shot at a cure, and short of that, at a recurrence that is mild enough not to cut life short or create a heavy burden.
Jim, thank you for another well written, informative and helpful response. I'm feeling a little overwhelmed with all of this information. It's a lot to take in. My big question is, how do I know if we have the best oncologists who are aware of all of this?
I'm rather upset now, after reading some resources, that Irv's penile rehab hasn't started. I would have thought that he would have been on the PDE5 medications already. I feel like, I could read all of this stuff and learn to understand it, but who is going to change their plan of action because of something I say? Is Canada known to provide treatment that's as good as the states? The psychologist we went to see said that Princess Margaret is one of the best for this.
Can any of you recommend the best oncologists in Toronto...particularly for radiation and hormone therapy? I need a doctor who is as well informed as you, Jim. I'd like to be able to take you with us to every appointment. I wish Irv would research like you do. He leaves it to me and I'm starting to feel like I just can't absorb anymore. I want Irv to enjoy every advantage with the best treatment of his cancer but I don't know how to know if he's getting that...and if he isn't, how to make sure he does.
I doubt decisions we've made together...like the nerve grafting. I'm starting to think that was an unneccessary waste of time and that Dr. Klotz was right and we should have stuck to our original plan. I need help understanding and absorbing this. Right now, I'm feeling a little lost.
I don't even know how to get Dr. Fleshner to just slow down and answer our questions in a concise manner. He seems to be in rush all the time. Okay...I'm rambling...tired...feel like I'm spinning my wheels...staying up late at night reading about prostate cancer and feeling like I'm getting no further ahead to make sure that we can find Irv the best treatment. How did you get to the point you're at, Jim? I'm starting to read your material and I just can't process it anymore. I'm hoping for words of wisdom.
Oh, one more thing....It seems that the medical expertise with hormone therapy isn't as advanced here, or runs on a different philosophy. Dr. Fleshner said that he doesn't want to start hormone therapy, not until we have to...so not as part of the adjuvant therapy. It seems that the belief is that the side effects are horrible and that it may only be effective for a few years. I don't know if I'm misunderstanding but, for me, you are living proof that you can live with hormone therapy. It almost seems that the doctors here just don't have the same expertise with combination therapies and drugs to counteract the side effects.
Jim, what have you heard about Princess Margaret Hospital? Anybody out there have recommendations for certain experts I should try to get Irv to see? It's 5 am here...Haven't gone to sleep yet...The mind is always racing....
Before this is over, you will be an expert! (Probably not the field you would have chosen to become extra knowledgeable.) I'll put some thoughts in green, and I hope you get some replies from other board participants who live in the Toronto area.
Quote:
Originally Posted by srhonda61
Oh, one more thing....It seems that the medical expertise with hormone therapy isn't as advanced here, or runs on a different philosophy. Dr. Fleshner said that he doesn't want to start hormone therapy, not until we have to...so not as part of the adjuvant therapy.
Living in Canada, or Toronto, is not the problem as their are some great Canadian doctors who are highly knowledgeable in hormonal therapy. Even Dr. Klotz, though he is a surgeon, helped launch research on intermittent hormonal therapy, the approach that now looks superior to continuous therapy for many of us (not all, especially many men with metastatic prostate cancer). There is some world-leading expertise in hormonal therapy in Vancouver, and Dr. Fernand Labrie has made some key contributions at Laval University in Quebec. Toronto researchers have also contributed.
The problem in the US is that most surgeons, and even probably many radiation oncologists, do not understand the potential of hormonal therapy, the role of various drugs, combinations, and orchiectomy, how it works, how to monitor it, and how to manage a patient under that therapy. Many doctors and researchers also believe some key myths about that therapy, especially the myth about short typical success before the cancer becomes hormone refractory. I suspect the problem is the same in Canada. I'm thoroughly convinced that the best kind of doctor to handle that therapy is a medical oncologist, especially if the doctor has many prostate cancer patients in his practice, with the ideal being a nearly complete focus on prostate cancer; that's probably true no matter which side of the border you live on.
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It seems that the belief is that the side effects are horrible and that it may only be effective for a few years.
Both are myths based on overgeneralization and lack of countermeasures in the first case and very advanced patients in the second case (those with extensive painful bone mets, or at least extensive bone mets). I can point you to research by Dr. Crawford many years ago that both revealed the importance that stage of the disease makes and unfortunately provided some of the figures that have been misunderstood and misused. Dr. Fleshner does not appear to know much about hormonal therapy.
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I don't know if I'm misunderstanding but, for me, you are living proof that you can live with hormone therapy. It almost seems that the doctors here just don't have the same expertise with combination therapies and drugs to counteract the side effects.
Yes, one patient is enough to prove what is possible. However, patients with less advanced disease than mine often do better than I have done. Often they need just one course of triple blockade for about a year and then go for many years or indefinitely without needing another course. A problem is that such successes have been documented by individual doctors but have not been reported in large studies.
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Jim, what have you heard about Princess Margaret Hospital? Anybody out there have recommendations for certain experts I should try to get Irv to see?
I don't know it very well, but I've heard from a doctor I respect highly that it is a leading hospital. That's where ketoconazole was discovered to work for prostate cancer, unless my memory serves me wrong. Ketoconazole has become a very important element of second line hormonal therapy. I do not know of specific experts there.
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It's 5 am here...Haven't gone to sleep yet...The mind is always racing....
First, congratulations on your continued great results! Your experiences and shared knowledge have been very instrumental in my peace of mind with this disease.
You stated in a response to Rhonda:
Quote:
More and more, early radiation is recommended for men with some risky features after prostatectomy. Until this week, I thought it was safe (and standard) to wait until the PSA neared 1.0, but being sure to get the radiation before that. I just learned that "the earlier the better" may be best. I'm thinking it's still wise to wait until the patient recovers from the prostatectomy.
As you may remember, what you describe is my situation: Gleason 9 with positive margins. 4.5 months after surgery, My PSA is undetectable. In consultation with Dr. Scholz, I am currently doing bi-monthly ultrasensitive PSA tests, putting off radiation and hormonal therapy until we see a rise in PSA. What lead to your new insights about 'the earlier the better?" I will note that we are not looking for a PSA of 1.0 before acting; instead, we will be watching for a trend, with the cutoff being in the low hundredths.
I'm responding to your very recent post, excerpted here:
Quote:
Originally Posted by Gleason9
Hi Jim,
...As you may remember, what you describe is my situation: Gleason 9 with positive margins. 4.5 months after surgery, My PSA is undetectable. In consultation with Dr. Scholz, I am currently doing bi-monthly ultrasensitive PSA tests, putting off radiation and hormonal therapy until we see a rise in PSA. What lead to your new insights about 'the earlier the better?" I will note that we are not looking for a PSA of 1.0 before acting; instead, we will be watching for a trend, with the cutoff being in the low hundredths.
...
Dr. Scholz has been using the ultrasensitive tests for more than a decade; as his practice focuses entirely on prostate cancer, he has seen a great many patients with all kinds of situations, including yours, as you no doubt are aware; he knows what the PSA pattern should look like, including the odds of recurrence at different ultrasensitive PSA levels. I think you are getting the best of care and will get the benefit of avoiding unnecessary radiation or using it very early, if needed, based on those ultrasensitive PSA test results in the hundredths. What you are doing is what I meant by as early as possible, but I can see now that I should have been clearer. Thanks for illuminating these key details.
Do you and Dr. Scholz have a target for starting radiation, if needed? I'm thinking that if you had a PSA <0.01, or a PSA of say 0.01 to 0.03 but stable, that radiation would not seem necessary. Would the trigger be a any rise, or a rise above, say, .03? As of several years ago, ultrasensitive results below 0.01 were not considered clinicaly useful. Do you know if there has been any change in that thinking? Dr. Scholz would be one of the first to be aware of a change, I think.
My basis for "the earlier the better" was the two doctors at our Us Too education and support group meeting this month, especially the radiation doctor. (The other was a medical oncologist, and a urologist was not able to come.) As for clues that early radiation was approprate, the radiation doctor was emphasizing post surgery clues like postive margins, seminal vesicle involvement, and extensive Gleason grade 4 from the post-surgery pathology. I asked the doctors about their use of ultrasensitive PSA tests, and neither used them. These doctors are both respected locally, and I think they do a lot of good for many patients; but their non-use of ultrasensitive tests is a sign of the enormous gulf in treatment expertise between leading experts, especially those who specialize in prostate cancer exclusively, and good local doctors. It seems to me that ultrasensitive PSA testing would be the key clue for deciding whether to have early radiation after surgery.
By the way, I have never formally consulted with Dr. Scholz. However, he reviewed an electronic synopsis of my challenging case when I was deciding back in 2002 whether to stop the Lupron and Casodex and go on intermittent therapy, continuing just the Proscar and bisphosphonate (and lifestyle tactics, of course). He said, in effect, that I would have a decent shot at success with intermittent therapy. I've also talked briefly with him twice at two of the National Conferences on Prostate Cancer, at which he is often a presenter, moderator, or host. Both times he gave me key information. I've benefited greatly from so much of the information that his practice has learned and communicated about prostate cancer, including the fact that most of us will be successful with intermittent blockade for either about ten to eleven years or indefinitely longer. He is one of my heroes!
Again, thanks for spotlighting this important issue.
Jim, I've just read your last post and I am feeling doubtful that ultra-sensitive PSA testing is done in Canada. Would you have happened to have heard anything in that regard? I know your focus isn't Canada but it would be interesting to know.
Also, based on what the doctors said at the meeting, Irv, with his positive margins and seminal vesicle involvement, he should definitely have adjuvant radiation. Since he is still, not surprisingly, completely impotent, chance of natural erections after earlyradiation would almost definitely fail. Of course, the main goal is to keep him alive. However, I'm unclear about what you have found out about this level of cancer and comparing the benefit of adjuvant RT within 3 months of RP or to monitor with frequent ultra-sensitive PSA tests. I'm hoping you'll comment on that. In the meantime, I'm just expecting that, come February, we're facing several weeks of radiation, as long as the oncologist feels that Irv can tolerate it, in light of the fact that he has a history of ulcerative colitis.
I used to develop immunoassay kits. I just want to address some misconceptions that may be out there among doctors about ultra-sensitive PSA tests.
1. There are several kits out there, and they vary in their sensitivity and their lower detection limit. In the following Stanford study, they looked at four different kits whose lower detection limits were found to be .06, .01, .07 and .05, and the ".01" was found to be the least accurate.
http://www.ncbi.nlm.nih.gov/pubmed/7523709
2. Prostate Specific Antigen is not really that prostate specific. There are extra-prostatic sources of PSA, for example, the urethra. This was mentioned in this UW study:
http://www.ncbi.nlm.nih.gov/pubmed/7508782
3. In the following study, they found that undetectable levels indicated a favorable prognosis, but "Although the difference in mean [ultrasensitive] PSA levels was statistically significant for those patients who did and did not recur, the overlap in values invalidated any clinical utility."
http://www.ncbi.nlm.nih.gov/pubmed/16925750
One can determine PSA nadir and biochemical failure from the normal PSA tests out there, so don't worry if your doctor can't provide an ultrasensitive test.
I'm not saying that ultra-sensitive tests aren't useful -- they certainly can be. But I think the usefulness is in tracking your own relative levels. That is to say that your trends may be significant (assuming the same kit was used each time), but the absolute value of any single test may not be.
I would recommend that people read the blog entry: "The Case for Ultra-Sensitive PSA Testing After Prostate Cancer Treatment." The author states his reasons for preferring the ultrasenstive tests.
As for my case, neither I nor Dr. Scholz would consider relying on the standard PSA test, as it would not give early enough warning of recurrence. Properly used, the ultrasensitive test can show recurrence long before the standard test would even register the PSA as detectable.
Tom
Last edited by Gleason9; 12-22-2010 at 11:51 AM.
Reason: typo
It's helpful to get your historical insights about these tests, but I want to make a few points about why I'm enthusiastic regarding the value of these tests. I'll comment in green using an excerpt from your post a couple of posts back, behind Gleason9's post that also supports use of those tests.
Quote:
Originally Posted by Tall Allen
I used to develop immunoassay kits. I just want to address some misconceptions that may be out there among doctors about ultra-sensitive PSA tests.
1. There are several kits out there, and they vary in their sensitivity and their lower detection limit. In the following Stanford study, they looked at four different kits whose lower detection limits were found to be .06, .01, .07 and .05, and the ".01" was found to be the least accurate.
http://www.ncbi.nlm.nih.gov/pubmed/7523709
Your earlier experience may be misleading you here. That study you mention from Stanford is very old and obsolete. It dates from 1994, and it's no wonder that the researchers found unreliability back then. They were probably dealing with first generation attempts at an ultrasensitive test. When you think about it, the PSA test itself had come into general use not many years earlier!
I learned about ultrasensitive tests at the National Conference on Prostate Cancer 2000, held in Long Beach, CA, near you. Dr. Stephen B. Strum, MD, medical co-author of "A Primer on Prostate Cancer -- The Empowered Patient's Guide," devoted considerable time to research on ultrasensitive tests and about a dozen pages of workbook material. He and his then partner, Dr. Mark Scholz (author of "Invasion of the Prostate Snatchers") were using ultrasensitive tests routinely in their practice and were convinced of their great advantages over conventional tests.
However, I doubt they were then using any of the tests mentioned in the report you cited. They specifically emphasized use of the Diagnostic Products Corporation's Third Generation Immulite ultrasensitive test. I've never heard what they thought of the first and second generation ultrasensitive tests, but I suspect that, like you, they found them wanting.
My lab switched to a different ultrasensitive test than the Immulite test, but that's the one they and I used for years. If memory serves me well, that's the first ultrasensitive test approved by the FDA. With your special background, you might want to check the FDA records about that approval, and also check PubMed for more recent research. I think you will be impressed. If you wish, I can provide the cites that were given to us at the 2000 conference.
Quote:
2. Prostate Specific Antigen is not really that prostate specific. There are extra-prostatic sources of PSA, for example, the urethra. This was mentioned in this UW study:
http://www.ncbi.nlm.nih.gov/pubmed/7508782
This again is an old, now obsolete, study, dating to 1993. While the statement about extra-prostatic sources of PSA is certainly true, it has become very clear in clinical practice that PSA can be reduced to <0.01 and reliably assessed at that level in a clinical setting. Leading experts in hormonal blockade therapy do that routinely, and I've gotten my PSA to <0.01 twice myself (and the third time to 0.02).
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3. In the following study, they found that undetectable levels indicated a favorable prognosis, but "Although the difference in mean [ultrasensitive] PSA levels was statistically significant for those patients who did and did not recur, the overlap in values invalidated any clinical utility."
http://www.ncbi.nlm.nih.gov/pubmed/16925750
This is a more recent study, dated 2006, and well within the era of modern ultrasensitive testing. However, I am appalled with the authors' definition of ultrasensitive testing: <.1 ng/mL! In 2006 they should have been dealing only with ultrasensitive tests capable of at least <0.05! The authors of the study make this concluding statement in the PubMed abstract: "After RP patients might have PSA levels detectable by USPSA assays, i.e. <0.1 ng/mL. The amount of 'background noise' produced within this range precludes the ability to use this test as a clinical indicator of disease recurrence. However, undetectable levels appear to confer a favourable prognosis." Well of course! That is a HUGE and undiscriminating range considering the capabilities of modern ultrasensitive tests! I'm struggling to find any value in this study. The harm pops right out: misleading patients and doctors about what ultrasensitive tests can do.
Essentially, my impression of research is that the lower the ultrasensitive score the better, but that scores of 0.03, 0.02, 0.01 and <0.01 are all quite favorable, with 0.04 in the uncertain area, and 0.05 and above signaling likely recurrence, unless the level is stable or up and down centered at around 0.05 (goes for the other levels too - trend is important). Therefore, you can see that mixing in these favorable and unfavorable levels introduces a lot of "noise" so that you cannot really tell what is happening, which is what the authors reported. I'm highly confident they would have seen striking differences in recurrence levels if they had used the Immulite Third Generation test, which had been around since the previous decade.
These doctors are not alone in their ignorance. At a recent support group meeting, a couple of respected local doctors said they did not use ultrasensitive tests, and they had doubts about reliability. Keeping up with the state of the art is not easy for doctors, and it is obvious that many doctors have areas in which their knowledge is obsolete.
I need to add that a PSA higher than 0.05 does not guarantee a recurrence, let alone a recurrence that is serious enough to warrant additional treatment. I've read of cases where PSAs of say 0.08 or even higher, but stable, probably reflected some healthy prostate tissue left behind at the time of surgery, tissue that was still able to produce PSA.
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One can determine PSA nadir and biochemical failure from the normal PSA tests out there, so don't worry if your doctor can't provide an ultrasensitive test.
I'll have to take the strongest exception to your statement (while also strongly respecting you). To me, to Gleason9 and others, a doctor's reluctance to use a modern ultrasensitive test is evidence that he has not kept up with an important area of prostate cancer technology. It also means that the patient and doctor will be blind to a recurrence that could have been determined by an ultrasensitive test a year or so earlier, providing patient motivation to employ ways of stabilizing or slowing the rise in PSA.
A very well known medical oncologist who specializes in prostate cancer gave a talk this year to our support group, following which he was asked about whether use of ultrasensitive tests was important (of course, for patients whose PSA was below the range of conventional tests). This is an issue that frustrates him, and it boiled over. He stated that he considered the failure to use ultrasensitive tests to be "criminally negligent." I'll withhold his name because I'm not sure he would want to voice that opinion to a wide open audience, and he might temper that language for broad consumption. But he did say it!
[QUOTEI'm not saying that ultra-sensitive tests aren't useful -- they certainly can be. But I think the usefulness is in tracking your own relative levels. That is to say that your trends may be significant (assuming the same kit was used each time), but the absolute value of any single test may not be.
- Allen[/QUOTE]
Yes, it's important to use the same PSA kit or to understand likely differences if that is not possible. Also, as far as I've heard, while the most sensitive kits can report values to the third decimal place, such as 0.003, there does not seem to be any clinical significance to such third decimal values. And yes, occasional tests may report false results as the technology is complex; over many years with these tests, I have had only one that turned out to be way off, though at least two others fell through because of processing problems. Virtually all of the other tests tracked very well with what my doctor and I were expecting at the time.
With your special expertise, I dearly hope you will get yourself up to speed on the modern ultrasensitive tests. You could provide a great service in this area.
Thank you also for highlighting some of the studies that are probably prominent in leading many physicians not to use these wonderful tools.
For anyone reading this whose doctor does not use ultrasensitive monitoring when the PSA is <0.1, I suggest trying to educate him about the tests, or, as an alternative, telling him that having the test will give you the peace of mind you need so that you are not blindsided. I think most good doctors would accept such a request.
I had been questioning whether ultrasensitive testing was done in Canada and it seems that that is standard based on the scores.
Irv's post surgery PSA was 1.12 and a few days later, during the follow-up with surgeon (urologist/oncologist), Dr. Fleshner, Irv had another PSA test just to make sure that the reading wasn't in error. The second PSA test came back at 1.19. We were told that this difference was an insignificant discrepancy. Still, I wish that the discrepancy went in the other direction.
So, now what? We didn't get the result we wanted...at ALL! Any words of wisdom out there?
Eleven years ago today 
, and the odds of success for radiation were pretty low 
That prospect too would have been unbelievable to me eleven years ago. 
(My overall health is in better shape than it was eleven years ago, and even my bone mineral density has returned to the normal level.)
Re: Eleven years ago today 
