THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2021 SO THERE IS NO UPDATE.

I am a retired physician. In 2009 a prostate biopsy found a small Gleason 9 tumor.

My PSA never exceeded 2.8, but it had risen from 2.1 too quickly for comfort, which led to the biopsy. Rate of rise is more significant than absolute level, and can be detected only if you have a baseline level for comparison. The advice not to check PSAs routinely is very controversial, and it would have killed me.* (Suggestion: copy the footnotes to an email or word processor so you can flip back and forth easily.)

Being a physician gave me a great advantage: I could read medical literature (articles in medical journals), where there is no shortage of good information. I spent many hours in a medical library, and I learned a great deal.** (important hyperlink in this footnote)

I have not reviewed the medical literature since 2009, and it is possible that some of this information is dated. However I have recently read a meta analysis of multiple treatment modalities published in 2012, which which is consistent with information on treatment outcomes which I gathered in 2009. The big picture has changed little.

I expected to opt for surgery since that has yielded the best cure rates in the past, and I researched surgery first. In 2009, the major centers, with surgeons who did nothing but prostatectomies, had significantly higher cure rates than general urologists, and lesser complications. In the hands of these surgeons the nerve sparing procedure provided significantly better post op erectile function; in the hands of general urologists the technique yielded no significant difference.

I came away from my research believing that a general urologist performing a prostatectomy for cancer borders on malpractice, there was that much difference in outcomes. A man with prostate cancer who chooses surgery is much better off at a major center, with a surgeon who does nothing but prostate cancer surgery.***

In the course of consulting at the Huntsman Cancer Institute in Salt Lake City, however, I learned of ADT+brachy+EBRT, or Combined Modality, a relatively new radiation protocol.****

("Combined Modality" has also been used to refer to surgery followed by early EBRT, so many radiation oncologists prefer "seeds'n'beam'n'hormones", still awkward. So I will use Combined Modality for convenience, abbreviated CM. Here CM will refer to ADT+brachy+EBRT.)

I read the medical literature on the subject, and found that CM yields significantly higher cure rates for high grade (Gleason 8-10) tumors than any other treatment. In my case, Gleason 9, my odds of cure by surgery were about 40% (at Hopkins); and 80-90% with CM.

If you have a high grade tumor (Gleason 8-10), which has not spread to distant sites, I suggest that you consider any other treatment option very skeptically, and decide nothing until you have consulted a radiation oncologist (abbreviated rad-onc), preferably at a university hospital, and inquired about ADT+brachy+EBRT.

Warning: Despite CM offering me twice the cure rate of surgery, I found no shortage of surgeons eager to operate on me. Do not accept surgery without talking to a radiation oncologist first, preferably at a university hospital, and inquiring about ADT+brachy+EBRT (or possibly brachy alone if it is a low grade tumor).

CM consists of ADT (androgen deprivation therapy) beginning a month before and continuing throughout radiation; which consists of EBRT (external beam radiation therapy) plus brachytherapy (seed implants).**** (Note that IMRT is a variety of EBRT, and is usually so identified. Most recent studies of "EBRT" have used IMRT.)

Unfortunately, CM is not widely available. It is standard practice at university hospitals, and at some others. It is not generally available locally. I hope this will change as more rad-oncs graduate from programs which teach it.

I strongly recommend that anyone diagnosed, but not yet engaged in treatment, or uncertain of his treatment choice, talk to a surgeon and a radiation oncologist at a university hospital. There you can be confident that the doctors will have studied the literature, know the outcome statistics, and adjust their practice accordingly.

Equally good care is available at some non-university hospitals and clinics, but, without outcome statistics, how is a layman to know which ones? To my knowledge, there is no source of reliable information available to laymen. So I believe that a layman's safest bet is a university hospital.

Please do not be swayed by advertisements for the latest new treatments, or the superiority of one hospital or clinic. Rememberthat advertising is not intended to optimise your health care, but rather to maximise the profits of whoever is doing the advertising. It takes at least eight years of follow-up of at least a hundred patients to adequately evaluate a new or modified treatment modality. Any treatment which is not supported by this kind of evidence should be regarded as experimental, and betting your life on such treatment as gambling.****** There is a strong tendency in this country to place our faith in the latest coolest highest tech fad, but this doctor considered only treatments supported by long term follow-up of large numbers of patients when making his decision. These may not be the newest and coolest and highest tech, but they have proven track records.

What else? Three month Leupron month shots usually suppress androgens for about 6 months. I guessed that 1 month shots might suppress androgens for about 2 months. I opted for three one month shots. Sure enough, androgens returned about two months after the third shot, two months sooner than the usual recovery from a three month shot. My sample of one is hardly scientific, but it is suggestive. If you would prefer to get your androgens back sooner....

I was surprised to discover that without testosterone I did not miss sex in the slightest. It seemed that without testosterone sex was simply irrelevant. I enjoyed getting it back, but I never missed it when I didn't have it.

Swelling due to seed implant may restrict urinary flow shortly after implantation. It also made it painful for me to sit. The sort of neck cushion used for air travel will make sitting comfortable during this period. Place the ring around your anus, and the gap beneath your urethra.

Inflammation due to radiation will likely begin to restrict flow about a month after radiation. The prostatic urethra is muscular, and if it gets mad enough about being fried it can contract hard enough to block flow. About 10% of CM patients will require a catheter for about two weeks, but most get by with drug treatment.

Frequency, urgency, and obstruction vary a great deal from one patient to another. A few scarcely notice it, and sometimes it is severe, persisting for months or years. It can be largely controlled by drugs.

I, unfortunately, fell into the 1% who have the most severe urinary problems. I required catheterization for five weeks, didn't dare go more than a few minutes from a toilet for weeks after that, and I am still dependent on drugs for nearly normal urinary function three and a half years later. I chose a treatment with very good odds, but had the misfortune to fall into the worst 1% in this respect. It is possible to improve your odds, but there is no guarantee of the outcome for any individual. Saying 99% of patients will not have severe problems is another way of saying that 1% will.

The anterior wall of the rectum lies immediately posterior to the prostate; it is impossible to nuke the prostate without nuking the anterior wall as well. Consequent inflammation of the rectum is likely to result in transient rectal frequency and urgency, the severity and duration again varying between patients. Chronic radiation proctopathy (often called proctitis, though it is not inflammatory) may develop months to years after radiation. It is often just a nuisance, causing mild rectal frequency and urgency and bleeding, which may of may not be worth the bother of treating. If it becomes more severe effective treatment is available.

I have developed radiation proctopathy too, so far just in the nuisance category.

CM (or radiation alone) may impair erectile function, usually beginning two to five years after treatment. The single best predictor of post radiation erectile function is function before treatment. Men with good erectile function prior to treatment are unlikely to suffer serious loss of function. Men with marginal function prior to treatment are likely to suffer more severe impairment. Ask your doc about drug treatment to improve your odds.

Three years after Combined Modality therapy, my PSA is stable at 0.03. This is probably a cure. If it repeats in December it will almost certainly be a cure. But, again, I am a sample of one; in this respect I lucked out better than average.

Brooke Jennings, MD

*The recommendation that PSAs not be checked routinely was based on one American study, which was poorly designed, making its findings dubious. (Poor design can produce invalid statistics.) Two well designed European studies reached the opposite conclusion, and recommended regular PSA checks. I suspect the National Cancer Institute's decision to accept the flawed American study and ignore the better European studies may have been influenced by a desire to reduce Medicare costs. This sort of decision, as well as those of the FDA and EPA, can be driven by politics as well as science.

A major concern is that PSAs have led to much unnecessary surgery in the past. A knowledgeable urologist or rad-onc can now identify a large fraction of tumors which can safely be just watched. This should greatly reduce unnecessary treatment in the future.

**The information I found in the course of my research permits a rational probability based decision on the best treatment(s) in most circumstances. With this information, choice of treatment is not a crap shoot. Unfortunately, finding this information required reading numerous articles in multiple medical journals. I spent upwards of 50 hours on the project.

This has recently changed with the publication in 2012 of a meta analysis by Grimm et. al., which compares outcomes of all major treatment modalities in one place. Would that this had been available in 2009 when I needed the information! This article tells you pretty much all you need to know to make a decision based on probability of cure, though It does not address side effects.

It can be seen at http://onlinelibrary.wiley.com/doi/10.1111/j.1464-410X.2011.10827.x/abstract Scroll down to find "View Full Article", and then click "Get PDF".

The guts of the article from your perspective is in the color figures; one each for low, intermediate, and high risk tumors. Crudely, Gleason 6 is low risk, Gleason 7 is intermediate, and Gleason 8-10 are high risk, though the size, number, and location of the tumor(s) figure in as well. Note that the x axis is follow-up period, and the y axis is cure rate (defined as no chemical recurrence during the follow-up period. Each color represents one treatment modality or protocol (EBRT includes IMRT, which most recent studies have used). Each dot represents the average cure rate and the follow-up period for one study.

Recurrences are unusual after eight years, and virtually unknown after ten. Focus on studies with 8 to 10+ years follow-up. Something vaguely like "average" data for each modality is presented as a standard deviational ellipse. Not really average, but that is about as close as you can get to understanding it without taking a statistics course. The height of each ellipse represents (approximately--it is really standard deviation) the range of cure rates for all studies of that modality/protocol. These studies all use standard deviation instead of average because it is more informative, at least if you understand it.

Some studies produced significantly higher cure rates than others. You might want to look up the references for those studies to see where they were done, and consider getting treatment at one of those centers. (That's what I did.) And of course some studies produced inferior cure rates. Likewise, the centers where these studies were done are best avoided.

***This is not true of medicine in general; in most fields, good community practice is close to best practice. I was literally shocked by what I found in prostate cancer care. In this field, the gap between best practice and community practice is by far the greatest I have ever seen in my career. Major centers produce significantly better surgical outcomes. CM is not widely available outside major centers.

(By "good community practice" I mean the practice of community docs who keep up with the major journals of their fields. Not all community docs bother to do so; those who do not may not be aware of current best practice, or care.)

If you have a heart attack, a good local cardiologist can handle it quite as competently as a major center. If you have prostate cancer, however, you will be much better off at a major center.

****The combination of seed and beam treatment was first tried in 1986. ADT was added later, and cut the recurrence rate roughly in half. By the mid 2000s there was long enough follow-up on enough patients from multiple programs to demonstrate unequivocally that this is the best treatment available for high grade tumors. In prostate cancer treatment, this qualifies as "relatively new", because the confirmation of efficacy is recent. Note that the time span from first trial to certainty about results of improved practice was two decades. Prostate cancer research advances slowly. Any technique which does not have at least eight years of follow-up on at least a hundred patients should be considered experimental, and a gamble.

*****Cyberknife was the poster child for this. The FDA approved it for general use before its long term efficacy had been established; I suspect that some Congressmen were paid to lean on the FDA to get fast approval while it was still really experimental. It was hyped to the skies; it was very high tech (and high cost), advertisements claimed it was the best treatment ever, and lots of people were swayed by the advertising. In fact it had not been scientifically shown to be as good as some other treatments, let alone better. Do not base any decision on advertising! As far as I can tell, Cyberknife is not included in the Grimm et al studies, which leads me to question if it has been adequately studied. I would require comparable follow-up and outcome data for Cyberknife before considering using it.

This is a follow-up note four years after seed implant December 2009. My December 2013 PSA was 0.01. This almost certainly represents a cure. I am generally doing well.

I continue to have intermittent mild urinary frequency and occasional urgency, with maximum drug treatment to control it. I have thought about decreasing the drugs during quiescent periods, but then symptoms worsen again, and I continue at full dose. And then they decline again. If symptoms settle down for a few consecutive months I will try reducing the dose. (Remember, I am in the worst 1% in this regard. Very few who have chosen this course of therapy have had anywhere near as much urinary trouble as I have had.)

My radiation proctopathy flared for about two months during the past year, with increased rectal frequency, urgency, and bleeding. But then it settled down again, and has been only a minor nuisance since then, without any treatment.

My erectile function varies from marginal to excellent and back, reason unknown. I don't think this has anything to do with radiation, since radiation damage does not get better. My urologist has no idea why this is happening.

Why, after all the trouble I have had, why would anyone choose radiation? Because at every risk level, radiation produces higher cure rates, as demonstrated by the metastudy hyperlinked in my footnotes. If you do not expect to live more than ten years or so, absolute cure may not be so important; slowing it down for ten years may be all you need. But if you expect to live fifteen years or more, and want to be completely cured to enable this, radiation provides the best probability of cure.

Brooke Jennings

Five years out from radiation, my most recent PSA was 0.02, range 0.01-.03 since treatment. This almost certainly represents a cure.

I still have variable urinary frequency and occasional urgency, while maxed out on Hytrin and Flowmax. About 2% of men who undergo EBRT+Seeds+ADT are dependent on drugs 10 years after treatment, which I think probably means for life. I seem to be falling into this group. OTOH, I've done pretty well in other respects.

I have mild radiation proctopathy, with rectal frequency and sometimes urgency for the first two to four hours after I get up, then essentially normal for the rest of the day. Blood loss has been minimal, occasional blood on paper or on stool, nothing significant.

I had excellent erectile function before and for three years after treatment. During the fourth year it faded, and by the middle of the fifth year I became completely impotent. There is now an effective implantable prosthesis available, which, I have been told, has proved very satisfactory for a lot of couples. Cost ranges from $10,000 to $30,000, depending on venue and insurance. In my case, the same clinic charges $10,000 if you have Medicare, but $20,000 if you don't. American medical charges are completely insane.

And if you have partial erectile function, generic sildenafil (AKA Viagra) is now available for less than a buck per 20 mg pill. If your doctor hasn't heard about it, ask for sildenafil 20 mg, or generic Revatio. My pharmacist had never heard of it, but found it when he looked. Pfizer is praying few find out about this.

My penis has atrophied from 17 cm in 2011 to 12.5 cm now. This is not unusual with this protocol; it is said to be due to ADT rather than radiation per se. Though is not obvious to me how four months of ADT could cause atrophy years later, while radiation is well known to cause delayed damage. But, last I heard, it was blamed on ADT. Skip ADT? It appears to cut recurrence roughly in half. My 12.5 cm penis is still enjoyable for me and my wife.

Six years out my PSA is zero.

I have recently developed bladder spasm which has overwhelmed my obstructive symptoms, masking obstructive symptoms if I have any. Spasm this long after radiation is unlikely to be due to the radiation. Probably just another nuisance of aging.

I gradually lost erectile function during the fourth year after radiation, and became completely impotent in the fifth year, the typical time interval for radiation induced impotence. I have had a penile prosthesis installed, and my wife and I have found it satisfactory.

I continue to poop 5-6 times after getting up in the morning, due to radiation proctitis. After that it settles down, and function is essentially normal for the rest of the day.

Altogether I think this is a fair price to pay for curing a Gleason 9.

I am now seven years out from my radiation in the winter of 2009. Very low and stable PSA probably represents a complete cure. (One or two more years to be sure.) Problems include impotence and radiation proctitis. I have had an inflatable prosthesis installed, and my wife and I have found it satisfactory. I am having a bit more bleeding and frequency, but nothing terribly alarming.

My urinary difficulties are probably not due to radiation; there is no statistical evidence to believe it is. I include it only because it might be due to radiation. The bladder spam I reported last year has subsided, but I still sometimes drip (every day). It is behaving as if the urethra were blocked intermittently. Scoping it found no blockage. Urologists don't know why this is happening; I gather intermittent blockage is very unusual.

My only real medical problem now is that my mind is beginning to fail. I don't know how long I will be able to continue these notes.

I have developed a urethral blockage by scar tissue, almost certainly due to the radiation. I will have surgery to open it this month.

Why did I choose radiation? Because I had a Gleason 9, and radiation offered twice the cure rate as surgery for high grade tumors. (40% for surgery, 80% for radiation) Surgery offers equal cure rates to radiation for low grade tumors, but as risk goes up, so does the advantage of radiation.

I also have long had a hyperactive rectum, stooling several times each morning. It is not certain that this is radiation related, but there is that suspicion. There are minor changes on colonoscopy, but they are not definitive of anything.

I have discovered that the onset for Lomotil is an hour to an hour and a half, vs three hours for loperamide, a major advantage. Lomotil requires a prescription; the faster onset is worth the trouble.

Overall, it looks like a cure for a Gleason 9, which I think is worth the trouble.

My only new info is that I am developing urethral obstruction. This is almost certainly a result of radiation, as it is being caused by scar tissue at the previous location of the prostate. I will have to have it opened by surgery, and I have been told that the surgery will likely have to be repeated every few months to every few years.. I'm hoping for years.

Was it worth it? Ten years out, this is a full cure of a Gleason 9 tumor. The surgical alternative would have given me only half the probability of cure that my radiation protocol did. If I were starting out again, I would still do the same thing again. After consulting the latest literature to see if anything better may have come along, but I haven't heard of such a development.

And the highly advertised super-duper best-ever CyberKnife? I haven't found any follow-up data, which would be readily available if it had produced good results. I infer it was a highly publicized and very expensive fad (fraud?) that didn't come close to meeting the hype. Do NOT be swayed by any advertising, no matter how good it may sound. This doctor did not consider any treatment with less than eight years follow-up of at least a hundred patients. If it doesn't have this kind of history, it is still experimental and a gamble. The CyberKnife was a gamble which lost.

How about robotic surgery? A university surgeon I talked with said he used a robot for about half of his surgery. If the tumor was accessible without a robot, he did it manually; sometimes the anatomy made it more approachable with a robot, and if the robot was more convenient, that is what he used.

Good luck with your adventure!

My PSA is still very low and stable ten years out; looks liked a cure.

My urethra has become severely constricted, and required two surgeries to open the obstruction. Urologists say this is very common after radiation. I knew there was a chance of this developing, but I thought the probability was very low. This seems not to be the case.

But one can only base decisions on information available at the time of the decision. I reviewed plenty of information (about 50-60 hours in a medical library, by a doctor who knew how to read medical journals). If I got some things wrong, the moral is that with all the information available at that time, I still got some things wrong in the long term.

Brooke's e-mail address is: brookej AT xmission.com (replace "AT" with "@")

NOTE: Brooke has not updated his story for more than 15 months, so you may not receive any response from him.