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I want to pass on some information that newly diagnosed men absolutely should consider. It is from the excellent blog “Palpable Prostate” by A. Black. The gist of this is that for intermediate- and higher-grade PC pts (GL 7+, PSA 10+), *open* surgery for PC is considered preferable to laparascopic (which includes robotic) surgery by a number of notable surgeons. One reason is that it allows for more extensive dissection of the lymph nodes, which is very important in this situation.
I am NOT saying that if you are in an intermediate or high-risk category you should not have minimally invasive RP. What I am strongly suggesting is that you consult at least one open (traditional) surgeon to get a different point of view. Do some research and find the most qualified doctor in your area. Don’t settle for just anybody.
Dr. Alan Partin (of the famous “Partin Tables”), head of Urology at Johns Hopkins (top-rated urology faculty and top-ranked hospital in US by usnews.com), will not do a laparascopic RP on any patient with a Gleason grade over 7. This is also what I was told by Dr. Bertrand Guilloneau when I called about making an appointmentt for my husband a few years ago. Dr. Guilloneau pioneered the use of laparoscopic RP in France and was practicing it long before it was approved in the U.S. He is also head of minimally invasive PC surgery at Sloan-Kettering, the #2-ranked cancer hospital in the US . (I understand that Dr. G. has since changed the rules, but I’m not sure why.)
The website I referred to, Palpable Prostate, has a 4-part survey of the relative merits ot the different kinds of PC surgery. http://palpable-prostate.blogspot.com/2007/03/rp-vs-lrp-vs-rlrp-part-1-open-surgery.html. Then there is a wrap-up of “what surgeons and others say”. The information here is comprehensive and well-sourced, with links to all cited references. Here is a pertinent excerpt of doctors’ opinions:
Dr. Kevin Slawin of Baylor College of Medicine:
“Dr. Slawin recommends that [patients with] Gleason 6 and less extensive Gleason 7 [3 + 4] can have laparascopic surgery, while patients with more extensive Gleason 7 [4+3] disease and Gleason 8-10 patients have open surgery and are most effectively treated when a careful, extended lymph node dissection, that includes the removal of all lymph nodes situated in the iliac, hypogastric, and obturator regions, is performed as part of the prostatectomy procedure. This type of lymph node dissection can only be best performed using an open, rather than robotic-assisted, approach.”
“Patients with larger Gleason 7 – 10 tumors, situated primarily at the base of the prostate, who have a high risk of seminal vesicle invasion, can achieve a lower positive margin rate and higher cure rates than those with similar tumors treated with standard techniques, either open or robotic, when treated with “en bloc” resection of the prostate, SVs and bladder neck.”
David F. Penson
“An Evidence-Based Analysis (Feb 7, 2007) concludes that for low risk patients (all of: GS 6, PSA < 10, cT1 or cT2a) either open or robotic is reasonable, but for high risk patients (any one of: GS 8 or higher, PSA > 10, cT2b or higher) open surgery is preferred. For intermediate risk patients (GS 7) the proper approach is unclear.”
BTW, the results achieved of by minimally invasive surgeons (such as short recovery time), can often be equalled by an experienced open surgeon. Also, there is no evidence that the rate of ED is lower in patients who’ve had laparascopic PC surgery. Finally, I believe there are fewer urinary problems with open surgerey.
In any case, read the information for yourself. Always remember that the most important thing in choosing a treatment is saving your life, i.e., *cancer control*.
There is an article in today’s New York Times in which the author describes his thought processes as he went about first choosing a treatment and then a doctor after he was diagnosed with PC. Trouble is the guy is a newbie who doesn’t know anything but thinks he does . But didn’t we all?? I think this article is important to read because I see so many SMART men (and women) making the exact same (bad) choices. Here are some excerpts from the article, along with my comments.
In Prostate Cancer, Pick a Number, Any Number
By Burt Solomon, August 25, 2008
“I was counseled to pooh-pooh the higher-than-desirable Gleason score of 6, derived by adding the aggressiveness in every spot of cancer, because there was so little cancer in each.”
Get the facts straight. A Gleason score is NOT “derived by adding the aggressiveness in every spot of cancer“. Fair warning of what’s to come.
“I was only dimly aware of the evidence that most prostate cancers never become dangerous, even if left alone. But because nobody can tell which ones will and which ones won’t, the information was useless to me.”
Don’t make decisions when you’re “dimly aware”. And the information we have, although not precise, is not quite useless. You should have checked out all treatments before making a decision, including active surveillance.
“I quickly decided to have surgery to remove the prostate, but I had to choose between the two types”.
You should never decide “quickly” to have surgery. Buy now, pay later.
“I cared most about my plumbing returning to normal. But this was when the numbers really began to confuse things.”
Big mistake! Your first priority should be getting rid of the cancer. The plumbing comes in a distant second.
“One option was to go to Johns Hopkins in Baltimore, my hometown, where the older-style, slash-and-scoop surgery was devised. But the doctors there, my urologist said, cherry-picked their patients — no fatties need apply — to minimize the complications in getting the plumbing up and running again.”
Yes, they devised “slash and scoop” but also nerve-sparing surgery. And why talk trash about an excellent hospital because of what one doctor said? Presumably sugeons who “cherry-pick” patients, i.e., choose the ones with potentially the most favorable outcomes in order to skew their results, do so to lower their rate of positive margins (a sign that they likely got the cancer out), rather than to ”get the plumbing up and running again” ASAP.
“The other choice, called robotics, was newer and cooler. But the procedure has statistical distortions of its own. Some robotics surgeons have been known to exaggerate the speed of recovery by removing the catheter too early.”
Surgeons yanking catheters prematurely? I never heard of that. My husband had his cath in for three weeks!
“So both sides were skewing the numbers to market themselves.”
A bit pretentious for a newbie.“
A college classmate, a physician with a low opinion of his profession, advised me to forget the numbers, to visit both surgeons, look them in the eye and decide which one I liked. Huh? Why should I care? I wasn’t drinking a beer with the guy. Partly, my friend said, a likable surgeon would respond if something went wrong; an arrogant one might not admit a mistake. And partly, well, my friend really couldn’t articulate it, but he felt certain.”
Look what happened to our country because we elected a president we wanted to have a beer with. Hiring a not-so-good doctor based on personality is the easiest trap to fall into! Empathy can be faked, but not competence. And remember, personality and character are not the same thing.
“Likable” and “surgeon” don’t ordinarily cohabit a sentence,
( (What about Dr. Miles, Dr. Eastham, et al.)
but when my wife and I met with the robotics surgeon, we loved him. Patient, personable and the furthest thing from arrogant, he told us how his technique had improved from his first 200 operations to his second 200. (I was No. 431.) Only twice, he said, in Nos. 4 and 17, had the robotics failed and he had proceeded to the more intrusive surgery. His percentage of complications, he added, was as low as at Hopkins. I canceled my appointment in Baltimore.”
“We loved him”.
Remember, love is blind, so when you go see the doctor, check your hormones at a the door. Do you want a good doctor or the Dale Carnegie of the medical profession? By all means, if you find a doctor you click with, keep him/her in mind but don’t blow off the rest of your appointments (like we did). And it’s always a good idea to consult with at least a few surgeons.
Also, you can’t believe everything a person says just because he has an M.D. after his name. Ask for proof. And in terms of experience, 430 is a lot but there are surgeons around who’ve done thousands.
“The surgery wasn’t bad at all, and my recovery was startlingly swift. Eight days afterward, I returned to have the catheter removed — none too early — and to learn if the cancer had spread. When I asked the surgeon if the pathology report was “positive” — meaning good news — he winced.
“The news was good: The cancer had not spread beyond the prostate. But 35 percent of my prostate had turned out to be cancerous, considerably more than a dusting. I had dodged a bullet; the numbers had lied again.”
Too soon to celebrate. Hasn’t even had his first PSA test!
All serious illnesses cause emotional distress. But prostate cancer patients may be even more vulnerable. This is because treatments for PC often cause erectile dysfunction (in at least 50% of men who’ve had RP, for example), which is highly correlated with depression. Also, some men who’ve undergone treatment have been left with distressing side effects like penile shrinkage or Peyronie’s disease (curvature of the penis). Finally, ED *can and does* cause serious damage to patients’ relationships.
Incontinence, another common side effect of PC treatment, is no fun either.
A number of studies have shown an association between PC diagnosis/treatment with depression and risk of suicide, although I have to stress that MOST men who’ve been treated for PC go on to do fine.. They do not suffer from clinical depression. But if you look at certain online PC listervs that deal with emotions and intimacy, you will find that the “misery index” is stratospheric among SOME patients who’ve been treated for PC and/or their partners. They are not the majority, but I think their numbers are significant. I realize that these forums are biased, but anecdotal evidence does means something.
So it’s striking to me that the upcoming “Duke Prostate Cancer Symposium“, which features a “Patient Day”, lists two speakers who will discuss patient “quality of life” most directly — and both are urologists/oncologists. There is not a single psychiatrist, expert in sexual medicine or relationship counselor on the panel. I believe these are the people who can help most with improving the long-term quality of life of men who’ve had PC treatment. They should be an integral part of the PC treatment team. If this isn’t possible, the doctor who treats the cancer should give the patient information about ALL potential side effects and appropriate referrals for follow-up.
I will mention that the Duke Symposium will include a talk by a urologist/oncologist about the sexual complications of PC treatment. I’m sure most of it will be about plumbing. But the doctor does mention a study which is looking at sildenafil (Viagra) as a potential treatment for men with ED and depression. But another urologist/oncologist, whose topic is quality of life among men who’ve been treated for PC, has written almost exclusively about the problems of men who are poor or uninsured. Her focus is economic.
I think the primary doctors who treat PC don’t want to discuss consequences like depression, impotence or ruined relationships either because they’re in denial or they just don’t want to say out loud that these things exist. The problem is that the rest of the world knows and is apparently bothered by it. People from various backgrounds and disciplines oppose PSA testing because they believe that the treatments for PC cause more harm than good, Unfortunately, many lives are lost because of this opposition to screening.
One solution to silence the critics would be to do no harm in the first place, i.e., avoid aggressive treatments when there are reasonable alternatives like active surveillance. But so far this is not happening. Another possibility would be to *mitigate* the harm by providing men who’ve had PC treatment with proper support and follow-up. That’s what I’m talkiing about.
It’s very frustrating to me to see that so little progress has been made on this important issue and that so few advocates seem interested.
This was a good week for prostate cancer. First there was a front-page article in the Sunday New York Times which reported that the drug finasteride (Proscar) may, if taken regularly, lower one’s risk of developing prostate cancer by 30%. Then there was a study by Dr. Ornish of UC San Francisco, (excellent hospital), which showed that “lifestyle changes” trumped bad genes in men with early PC! “Genetic nihilism” is a thing of the past! So they say. But I would like to trumpet the news that hit closest to home. Dear husb had salvage radiotherapy just about a year ago for recurrent prostate cancer. So when I saw this, I was thrilled:
A research study performed at Johns Hopkins hospital whose results were reported in the Journal of the American Medical Association found that radiation therapy for prostate cancer that has recurred, also called “salvage radiotherapy”, has been shown to prolong life – if performed within 2 years — even in aggressive cases.
This story took center stage in the medical news and I urge you to read it in its entirety:
The implications of the Hopkins study are huge, if only because the findings are counter to what was believed by many PC researchers. First, we now know that there is an effective treatment for recurrent PC. It was reported that 86% of men who received salvage radiotherapy (SRT) were alive after 10 years. Deaths were reduced by two-thirds. More exciting, salvage rad appeared to be working on aggressive tumors, i.e., high-grade (e.g. high Gleason score) and fast-growing (high PSA velocity) ones. The researchers are not sure why and how this works, but the important thing is that it does. From Reuters:
While past studies have found radiation therapy helps keep tumors from growing, the latest study is the first to show a survival benefit from radiation therapy in aggressive prostate cancer that has returned. . .
You may not think it a big deal if a treatment prolongs survival. Isn’t that what it’s supposed to do?
Not necessarily. Let me give you the inside story as the wife of a man who recently underwent SRT. Believe me, I leanrned something about the subject. I think that sharing some of it might help you better understand the issues underlying the Hopkins story and the importance of their findings. And I also cannot urge patients enough to check out — on their own — the possibility of adding radiation therapy to surgery if they have intermediate- or high-risk cancer. It’s much better than having a relapse.
My husband began salvage RT just about a year ago for a recurrence of PC. (Had RP 10 ’05, PSA of .12 Jan. ’07). He had about 40 individual treatments. The good news is that it was painless (potential side effects are often exaggerated by surgeons) and that at 6 months his PSA was undetectable.
Originally, when dear husb got the news about his recurrence, (as a dutiful wife) I did a whole lot of research on salvage radiation. Of course, I was most interested in treatment outcomes. Unfortunately, after researching outcomes for salvage rad extensively, I found the results confusing and demoralizing. That’s because there was not a lot of reliable information out there. Mostly guesswork. T’s doctor said his chances of a “cure” with salvage rad was about 70%. That was consistent with what I read in the medical papers. Let me just explain that his odds would have been 50% if not for the fact that he had the rad done so early. Tacked on another 20 points, it did.
HOWEVER, I noticed after reading some medical papers that, after touting the effectiveness of salvage radiation, there would be a disclaimer at the end of the article stating, “SRT has not been shown to prolong life in any patient”. So what does it do? Halt the progression of the disease? Possibly. But it’s easy for statisticians to “cook the books” to get whatever result they want. I think in the case of the SRT studies I read the projections were based on the 5-year life expectancy of a man with PC who had been given salvage rad. So, spouse, age 55, would almost certainly be around in half a decade. Satisfying, but I would have preferred a longer-term outlook.
That’s why I’m one of those contrarians who recommends doing PC research sparingly. One reason is that, unfortunately, not much is known about many areas of prostate cancer. And statistics can confuse rather than enlighten. I’ve heard it said that most doctors don’t even understand them.
But I did find out some important things about SRT (and adjuvant RT, which is RT given immediately after surgery before there has been any rise in PSA) that I felt were not known to the online PC community and so I tried to spread the word. Some of the papers I read said that adjuvant and salvage RT are effective and lifesaving treatments — but that they’re “UNDERUTILIZED”. It’s unfortunate that the newest and best treatments are often not put into practice by doctors. Sometimes you, the patient, have to take the lead.
One point that was made repeatedly is that radiation after surgery is more effective the sooner it is done. Therefore, adjuvant radiation (done before any recorded rise in PSA) is better than salvage radiation. What this means in practice is that if a man is at medium- or high risk for a recurrence, he should consider having RT immediately after surgery. With salvage RT, men with a post-RP positive PSA are traditionally advised to wait 6 months in order to observe 3 successive rises in PSA to confirm that there is indeed a problem before undergoing treatment. In our case, based on advice from some “elders” in the newsgroups, we decided to consult some radiation oncologists right away. I have no doubt that that was the right thing to do. And the rad oncs didn’t think we came a moment too soon. DH had the salvage rad done when his PSA was (only) .17.
One thing to understand about SRT is that it will only work if a recurrence of prostate cancer is localized. The doctors have to aim the radiation at a specific part of the body, in this case, the prostate bed (where the removed prostate had lain). The hope is that there is some residual cancer there that is giving rise to the PSA that is circulating in the body. The other possibility is that the cancer has moved beyond the prostate area to other parts of the body, or metastasized. In that case, the SRT would not be expected to work.
Initially it was thought that only about 16% of recurrent PC was local. That would not bode well for salvage radiation. But doctors were getting positive results with a (much) higher percentage of patients, so there were several possibilities to consider. One was that more PC recurrences than had been previously thought to be distant were indeed local. The other observation made by researchers was that even some aggressive, high velocity cancers seemed to be responding to salvage radiation (again, confirmed by the new studies). So the assumption could be made that an aggressive, fast-growing cancer was not necessarily a metastatic one. Or — more boldly — could the radiation of the prostate bed help in some way we don’t understand even with distant metastases? That’s what many doctors believe.
The new research study answers some important questions. The finding should encourage patients with aggressive cancer who might not have other avenues for treatment, and also let patients who’ve had RP know that if their primary treatment should fail there are good alternatives available.