I'm borrowing soaring's post from yesterday on the thread "Cyberknife cost" to make some points about the value of Active Surveillance. These points may help all low-risk patients and their supporters who are coming to the board who are trying to decide what to do. I hope this will trigger thought and discussion. Jim
Originally Posted by soaring
I am 66 and just diagnosed with prostate cancer. Other than that I am in excellent health. PSA 2.7, Gleason 6 (3+3), T1c, 3 cores with 20-25%. I'm strongly considering Robotic Surgery but would like to know if I can at least consider Cyberknife as I am on medicare....
I like your optimistic username - that's a great sign, especially at this stage of the game.
Like daff, I encourage you at least learn which treatments are open to you (probably all) and which are not, and their pros and cons.
Most of us guys have a strong tendency to believe the cancer is just in one spot that can be removed or slaughtered, and we are practically hard wired to want to get the thing out or wipe it out as soon as possible. That can be a good thing, and success is highly likely for truly low risk men, though a fair number will have to pay the price of side effects or complications, as you can see from reading posts on this board.
On the other hand, our nature as men and the cold fear that can grip our spouses and children makes so many of us with truly low risk disease rush blindly past the option of Active Surveillance with deferral of therapy (hopefully for a long time or forever), especially using countermeasures invoving diet, nutrition, supplements, strength and aerobic exercise, and stress reduction, plus perhaps the mild drugs finasteride (generic for Proscar), or Avodart, and a statin (yes - statin drugs appear to have a prostate benefit, so you get a two-fer).
That's why I hope men with low risk cases will spend at least a little time thinking about this option. At least they should understand
what they are rejecting, with their minds unburdened by fear and misconceptions. If you get to that point, give your self a gold star for doing your due diligence!
You may then still have doubt about active surveillance, but it will be " reasonable doubt
", the standard we use for jury trials. If you then still want to go for a curative therapy, have at it! Whatever, the outcome, you won't later need to regret that you neglected understanding active surveillance!
Let's get rid of one misconception right here: while the term "watchful waiting" is sometimes used for "active surveillance," watchful waiting in its pure form means doing nothing after diagnosis while you hope that the cancer is non-aggressive and that it will never get to the point where you get clobbered with serious symptoms or death. In my opinion, that's plain stupid! Among many accomplishments, the active surveillance leaders have also shown us that about a third of their carefully selected patients will
have cancers that later reveal themselves as aggressive. Pure watchful waiting is not going to catch those until it is too late. Active surveillance, in contrast, will catch them in time for cure!
"Low risk," in my now savvy layman's view (no enrolled medical education) includes having all these bases favorable: PSA of less than 10, PSA velocity of 1.0 or lower in the year before diagnosis (if known) - definitely not exceeding a velocity of 2.0, a Gleason Score of 6 or lower with no grade 4 or 5 disease (including those grades as a "tertiary" - meaning third - component), stage not higher than T2b or no nodule on DRE, no more than 3 cores positive (or probably not more than 2 if only 6 cores taken), no more than 50% positive in any core, or less than 34% of the "biopsy cover" with cancer, no special unfavorable biopsy findings like perineural invasion, no unfavorable location of cancer in the prostate found during the biopsy, and of course negative results for any scans done. I've just learned that the Prostate Cancer Research Institute would like to add that the PSA density should be less than 0.01 (the PSA divided by the size of the prostate in cubic centimeters); that seems impractically small to me, based on what I think I understand from the active surveillance programs, but that's a question to resolve. One leading doctor (Dr. Klotz) thinks patients of any age should be considered, but he wants young patients to be toward the more favorable end (such as, overall, a PSA well under 10, a very small amount of cancer found at biopsy, low PSA velocity, etc.). Most leading doctors in active surveillance are more comfortable with patients nearer the upper sixties or older. Of course, patients with other health issues that are serious might want to allow more leeway in the usual risk picture so they could choose active surveillance. Also, different major active surveillance programs use slightly different standards for determining whether they think active surveillance is right for each patient - it's a developing science.
Oh, one other point regarding risk and age: for those men with PSA doubling times of 100 years or more, (for example, going from a PSA of 1.01 to 1.02 in 18 months, then to 1.03 in another 18 months), active surveillance might not be a wise choice if they could see themselves living several hundred years.
Actually, I'm mentioning this because about 20% of men in Dr. Klotz's series did have
a PSA doubling time of 100 years or longer. (Monitoring is needed as that doubling time can shorten dramatically in the rare instances when such cancer turns aggressive.)
Based on what you have given us so far, active surveillance (hopefully with nutritional and lifestyle, and mild supportive drug countermeasures, but with deferral of therapy) would be an option for you, assuming you had at least ten biopsy cores taken.
That active surveillance option takes guts - you have to overcome an abhorence of prostate cancer that has been fostered by our culture - a very tough task. But active surveillance is very well supported by research for the right kind
of case, and as a reward, you get to keep exactly the quality of life you have now. Most of those men on long-term active surveillance have found they can live a highly satisfying life while at the same time having prostate cancer - they've learned to live the high life with
cancer. (Actually, since prostate cancer usually takes many years to develop, they already knew how to live with cancer before diagnosis, they just did not know
they had the cancer, which of course makes the difference.) Frankly, many active surveillance patients are much healthier than before diagnosis because they become motivated to use the nutritional and lifestyle countermeasures that improve overall health, thereby lowering the risk of cardiovascular disease, diabetes, multiple sclerosis (vitamin D connection), etc. In our support group, it's great to see vigorous, healthy men on active surveillance who proudly report that their PSAs have dropped and are staying down!
With proper monitoring, the roughly third of patients whose cancer proves to be aggressive - a clear minority
-are moved to major therapy soon enough to give them virtually the same shot at cure as if they had had that therapy at the outset. In the meantime, they have benefited from usually at least a few years with virtually no burden from cancer care (except for monitoring), with the same quality of life, and with an opportunity for treatments to have improved - something that is happening at a rapid clip for prostate cancer. Of course, what we all long for is discovery of a convenient, non-burdensome cure for cancer, a magic pill! Many leading doctors think that will happen, and will happen within the foreseeable future, some betting on within the next ten years. If you move straight to a curative therapy, you lose out on taking advantage of that event. It can happen: think of curing scurvy, of penicillin, of preventing polio, - there's a long list.
If you are interested, I started a thread about active surveillance that summarized some of the key published medical research to date on this board, and you can find it in the archives. The title was "Active surveillance - a sound option for truly low risk men," and it was initiated on 1/5/2008. By the way, Dr. Peter Carroll's group has recently added an important study that demonstrates success in active surveillance/deferred therapy. That's not included in the earlier thread, and I no doubt have missed some other recent work as well.
I also initiated another relevant thread (actually applies to all approaches), entitled "Nutrition & lifestyle tactics - books, resources and a quick summary." That was initiated on 3/6/2008. Pomegranate juice and capsules look very promising at present, and you might want to check the threads about those as well, especially threads initiated on 12/17/2007 and 4/22/2008.
You will probably be excited about using such tactics combat cancer - something you
can do on your own (wives can be a huge help!), but if, instead, all those supportive tactics sound like a burdensome chore, keep in mind that the major active surveillance programs reporting such striking success (see below) do not
have requirements that men in their programs use those tactics. It's reasonable to suspect that many in the minority of unfavorable active surveillance patients - those who find they need to move to therapy because their cancer turned aggressive - would be able to stick with active surveillance if they used countermeasure tactics. That could produce an extremely high percentage of men achieving long-term success with active surveillance, but such a study is probably years in the future.
Many of the leading prostate cancer researchers and physicians, including top surgeons and their famous institutions, are enthusiastic about active surveillance, believing that it is key to the problem of overtreatment of prostate cancer while simultaneously avoiding the real risk of undertreatment. That list includes: the University of Toronto (Sunnybrook - Dr. Laurence Klotz, perhaps the world's leading expert), Johns Hopkins (including Drs. Carter, Walsh and Epstein), Memorial Sloan Kettering (including Dr. Peter Scardino), a famous university hospital in the Netherlands (Dr. Fritz Schroder - umlaut over the o), MD Anderson (Dr. Babaian), the University of California - San Francisco (Dr. Peter Carroll - when he's not coaching the Trojans down south
), Dr. Judd Moul (now at Duke, formerly a top PC expert at Walter Reed), and internationally famous medical oncologist Dr. Charles "Snuffy" Myers. Dr. Dean Ornish, known for his work with nutrition, is also on board.
Dr. Thomas Stamey at Stanford (famous PSA and prostate cancer researcher), can be counted because he is so concerned about overtreatment that he even opposes screening - I think he's way off base there, but he has distinguished company: Dr. Otis Brawley, now head of the American Cancer Society and a physician who has treated many prostate cancer patients when he was at Emory, has lingering doubts about screening for the same reason.
All of these doctors are highly respected among their peers, and many are the top leaders of key prostate treating units in their institutions.
If you want to research some of this for yourself, getting the facts straight from the horse's mouth so to speak, go to www.pubmed.gov
and search for " active surveillance AND prostate cancer ". That's a website we are permitted to use on this board because it is Government sponsored. Basically, that site is our key to what medical researchers have reported. It is the same tool that doctors use frequently to keep up with developments. I just did the search and got 428 hits. I used the "Limits" feature on the site's tool bar, calling for only studies that involved humans (probably didn't eliminate any hits with that one), that had abstracts (so I could click on the authors list and read the key details of the study), and that involved either clinical trials or meta-analysis (where results from a number of trials are pooled and analyzed). I got 67 hits. There's a restriction on who can do this: you have to be breathing and able to type on a keyboard .
Other than that, you qualify to do your own research!
There are a few leading experts on the other side. The one who is most prominent in my mind is Dr. William Catalona, a leading surgeon and researcher, formerly practicing at the U. of Washington at St. Louis and nearby institutions but now at Northwestern University. On this board, shs50 represents the view that even low risk patients would be better off with treatment.
While I consider active surveillance (with deferral of therapy but use of nutritional and lifestyle countermeasures as well as mild drugs) a superb strategy for the right patient, it is not an acceptable choice for many men. In fact it's not yet the choice for a large majority of low-risk men, though many are probably undermined by fear, misconception, and plain lack of understanding. For many patients, the prospect of living with
cancer is clearly more stressful than the prospect of living with pads or other long-term side effects of curative therapy, especially when expert doctors ane now able to greatly lower the risk of burdensome, irritable consequences. (But you should be aware that results from the Prostate Cancer Outcomes study of more than 1,200 men, published in 2005, showed that two years after surgery, 78% of men were impotent and 10% were permanently incontinent.) Also, as patients cross that 69/70 year age point, they increasingly tend to cross to the negative side of the burden versus benefit line for surgery, though other excellent options remain open. It's also not clear that the likelihood of successful nerve sparing is as good under the surgery option after a patient has gotten older because of years of active surveillance. And, of course, the active surveillance program needs to be well executed, though that is true with any approach.
Surgery, radiation, cryo and even primary hormonal blockade can be excellent for low-risk men, but my personal bottom line is that patients may rue the day if they cross off considering the active surveillance option prematurely
With major AS programs reporting that around two thirds of their patients are able to stay in the programs to the present (evidence of at least
medium term success), I'll close with an excerpt from a 2008 paper by Dr. Klotz: "... The largest, most mature Phase 2 study of active surveillance [probably Dr. Klotz's own program] has reported an 85% overall survival [these guys are getting older, so some die from other causes] and 99% disease-specific survival with a median follow-up of 8 years (range 2-11 years). [The program started about 11 years before the paper was published, but although we aren't able to see long term success yet, I (Jim) believe the percentage of those needing radical treatment becomes quite small as the years in the program increase.] The number needed to treat analysis suggests that between 80 and 100 radical prostatectomies would be required for each prostate cancer death avoided in a favorable risk, screen detected population...." And lets not forget that surgery itself would have a certain toll of adverse events over a pool of 80 to 100 patients, possibly wiping out the advantage of that one patient whose death from prostate cancer was avoided. Finally, let's remember that those 15% who died of other causes and not prostate cancer won the game
! Subtracting the 1% of deaths from prostate cancer in the active surveillance program who may have survived with immediate curative therapy (or may not have!
), there remain 14% who outlived the cancer, with the cancer in excellent control, without getting treatment, and without the burden of care from treatment!
I hope you will keep posting with questions, comments, and progress reports.
Take care, and good luck whatever you decide,