IADT3since2000

Hi again,

I'm responding to your latest post. There are a couple of points that deserve some emphasis as you work through sorting this all out. I'll put my responses in green with your comments remaining in black.

Thanks for all of your responses. They've been helpful. I'm trying to be analytical about this and so far, here is what I'm thinking. Feel free to poke holes in my analysis.

That's the best attitude to have at this point; remember, you have time to aim carefully before you fire. Switching methaphores, as the old carpenters' maxim has it: "Measure twice so you only need to cut once!"

I've read a lot, but not all of both the Walsh book and the Strum book. I've met with one surgeon and his team - which was surprisingly extensive.

Those two books are the ones at the top, for decision making, I think, though I would also add, now that you are into this a bit, "Surviving Prostate Cancer Without Surgery - The New Gold Standard Treatment That Can Save Your Life And Lifestyle," by Dr. Michael Dattoli, MD, Jennifer Cash, ARNP, MS, OCN, and Don Kaltenbach (survivor), 2006. The book does emphasize radiation including seeds, which are not appealing to you at the moment, but the thinking and evidence are first class as well as being easy to follow.

1. My pathology report indicates that the odds are in my favor for a slow growing, organ confined disease. The surgeon indicated that I won't die from this and that our goal is to minimize side effects. This is an overstatement. I think it's understood that the primary goal is to cure the cancer.

Actually, not exactly. Leading institutions in the prostate cancer community have recently taken a different tack: rather than focusing primarily on cure (with its attendant side effects, and a substantial percentage of cases where the need for treatment was probably low), they are taking, as the primary goal, doing what is best in the circumstances of the individual patient. In your case, as you have noted, that could be active surveillance. I'll just name three of the leading institutions, the first two widely recognized, as well as six leading international prostate cancer treatment centers (with lead doctors, most leading experts in the field, including surgeons) who are strongly endorsing active surveillance for appropriate patients with low and very low risk prostate cancer:

Institutions:
American Urological Association
National Comprehensive Cancer Network
The Prostate Cancer Research Institute

Programs:
The University of Toronto, Sunnybrook (Dr. Laurence Klotz)
Johns Hopkins (H. Ballentine Carter)
The Erasmus Medical Center, Netherlands (Dr. Fritz Schröder)
Memorial Sloan Kettering (Dr. Peter Scardino)
MD Anderson (Dr. Babaian)
U. of California San Francisco (Dr. Peter Carroll)

There is great concern in the field over overtreatment, and active surveillance has proven to be an effective way to hit the sweet spot - not too little treatment, and not too much treatment! A few years ago we did not have the research that proved that, but now we do.

But, I was happy to receive confirmation of what the members here have already posted.

2. Do I even need to treat it? This is actually a serious consideration for me. I'm conservative by nature. I haven't gotten Lasik eye surgery because contacts work fine for me and I'm not willing to take the risk of even a modicum of side effects. They may be very, very slim, but if you're the .005 percent affected then they're 100%.

You have just given the key point favoring active surveillance for a case like yours. However, while many of us have had virtually no side effects, that's not so for a majority who will face some burden, often through the course of their lives. If you need treatment, the side effects are worth it, and there are ways to try to decrease them. However, unlike that .005 percent chance you mention, the chance for at least one side effect that is at least somewhat of a burden are better than even for prostate cancer treatments. That's one of the key appeals of active surveillance of course - you avoid those side effects, or, if you prove to need treatment, you have the knowledge that you are not being treated for what looks like a better than even chance of no benefit.

From what I've read and heard, in my specific situation I could live 10 years and have the same chance of dying as I would if I treated this cancer.

And, in 10 years maybe there's something better that's been developed to treat this cancer.

You've just identified another key benefit of active surveillance: it is virtually a certainty that there will be great advances in prostate cancer technology in ten years. We know that based on what has happened in the past ten years and what is in the works now.

The problem with no treatment is that I plan on living at least 30 more years.

I've been following active surveillance closely for several years now, and my informed layman's impression is that the experts are becoming steadily more comfortable with having younger men on active surveillance, not just older men in their late sixties or older. At an international meeting of prostate cancer researchers in 2007 (IMPaCT), there was a panel of experts on AS. Dr. Fritz Schröder was already on record as being comfortable with men as young as 55 in his program. What really caught the attention of the audience was a statement by Dr. Laurence Klotz, arguably the dean of AS, that he was comfortable using AS with patients of any age! He added that he wanted more favorable case characteristics and did somewhat more monitoring with younger patients. A leading medical oncologist specializing in prostate cancer whom I follow said he now has fourteen men under forty in his practice on active surveillance!

And, I'll never have a better chance of fully treating this than now.

That actually may not be true, especially considering advances in technology. As just one instance, in one to three years we should have solid evidence whether Stereotactic Body Radiotherapy (basically only five radiation sessions (instead of around 40 sessions), as best known using CyberKnife) delivers the level of cure we think we are seeing and the minimal side effects we think men are experiencing. Another example is robotic surgery, which arguably has some advantages over open prostatectomy.

Even more to the point, for men with slow-moving, apparently non-aggressive prostate cancers that are carefully surveilled, accumulating research is indicating that treatment success is very close to success rates with immediate treatment, and that side effects appear to be about the same. This knowledge is critically important for decision making. However, as a man nears the age of 70, the surgery option begins to slip off the table, but surgery is just one of many options.

From what I've read, I'll get through any treatment I choose easier if I'm 50 instead of 60 or 70.

Of course, you'll get through active surveillance, if it works for you, easier than any intervention treatment. Also, many older men have done just fine with radiation and other options.

The first doctor I saw about this (whom I fought about getting a biopsy) told me that now is the time to catch it.

I sense you are getting a bit of a hustle. You have the luxury of time. Some of us do not. Enjoy it.

They can do something about curing it. This is something that I continue to think about as I analyze my options.

Active surveillance research has proven that you can also do something about curing it after active surveillance has determined that treatment is needed. Research suggests the patient following this course loses little if anything while having gained a shot at not needing any therapy while having been free of side effects during the intervening period. Research is showing that active surveillance programs are able to smoke out most cancers that are too aggressive within the first two to three years. The more time that goes on under active surveillance, the greater the odds of success in avoiding treatment, as I understand it from my informed layman's viewpoint.


Conclusion? I need to treat this in the next 6 months and (hopefully) move on.

Closure is so attractive for all of us. However, sometimes it is not the best course. I'm a layman as I mentioned before, but my impression is the vast majority of leaders in prostate cancer would say you do not need to treat your cancer, from a medical viewpoint. On the other hand, each of us has our own personality that also comes into the picture, as you note as follows:

If I were older, the decision would be more difficult. But, I've got things to do. I can't worry about prostate cancer. I can't baby myself.

Active surveillance clearly requires more ongoing active involvement than a major treatment such as surgery or radiation. It's less of an automatic pilot type approach, requiring more hands-on attention. That's especially so if the patient gets into lifestyle tactics, such as nutrition/diet/supplements, exercise, stress reduction, and perhaps some supporting mild medications (5-alpha reductase inhibitor drugs like Avodart or finasteride, a statin, perhaps a bone density medication).

On the other hand, major treatments are far from file and forget approaches. For one thing, semiannual or annual monitoring is needed, even when outcomes are ideal. However, the side effect burden is even more of a consideration, for the majority of patients. Fortunately, it is usually a mild burden, and many have virtually no side effects when treated by talented doctors. This just shows there are points on both sides.

I need to move forward.

Active surveillance and lifestyle tactics are one way to move forward. Have you considered that?

3. I need to treat it. But how? Well, I don't really know at this point. But, I know I plan on being around for 30 more years. And, I know I'm conservative. I want tried and true. This means surgery or radiation. From what I've read about the other therapies, they have great potential. But, I'm not going to be a test case. I want to be cured. And I want to remove as much uncertainty as I can.

You are swinging back and forth as so many of us have. (I chose surgery, was rejected (thank God! for my challenging case), chose radiation, then unchose radiation and committed to hormonal therapy. In some ways, I deserve the Bret Favre award for indecisiveness.) Your thoughts just above contrast with your analogy to Lasik eye surgery.

So far, I think the side effects are comparable for RP and RT. I argue this back and forth with myself. But, ultimately it's crap shoot.

You have the joy of many options!

I can minimize my risk if I pick the right provider. But, it's a risk. I'm not happy about it. What's bugging me about RT is that I have no idea what the late term effects of the radiation will be 25 years down the road.

Doses for radiation that are bringing very nice recurrence free success rates are notably higher than in the past. You might check some of the longer-term follow-up studies to see if there have been any significant problems. There is at least some concern with radiation causing secondary cancers, but my impression is that the occurrence is at quite a low level. That kind of concern is sort of parallel to concern over blood clots causing problems for surgery patients, as I see it. (Of course, any problems from clots would usually occur closer to treatment with surgery in terms of years after treatment.)

If I get the seeds, I can't even hold my daughter on my lap for two months. I'm not even supposed to ejaculate in anyone for two months. So, why do I want this in MY body if there's another way?

If your choice is surgery, ejaculations will be out permanently, let alone two months, and even erections may no longer be possible without help. (Loss of erections can be a problem with radiation too, though usually not anywhere near as quickly as with surgery.) Seeds would not prevent you from holding your daughter, just not in your lap for some time, to be on the safe side.

4. How do I pick a provider? I'm asking people. I'm working the Internet. I'm focusing on top teaching programs. But, there's so much hype. I'm disappointed in the medical system which is focused more on bottom line profits than it is on caring for patients. Why can't I find an impartial advisor? Follow the money and you'll find your answer.

You could try a consult with a local medical oncologist who treats later stage prostate cancer patients but does not have a horse in your race. He could probably give you good leads about the local experts.

So, where am I now? I'm going to finish both books that I'm reading. I'm going to meet with another doctor. And, I'm going to make a decision on treatment. The only thing I'm certain of right now is that, at my age, this is the time to treat prostate cancer.

Reading your post leads me to think you are still keeping your options open, including active surveillance. That's not a bad thing.

And, I'm sad about the side effects. I'm actually frightened of them. But, I'd prefer to die a fast death rather than fighting a cancer that I could have taken care of when it was in its infancy.

If you check into the active surveillance research from the major programs, you may conclude you can have your cake and eat it too. In other words, you can find out whether you need treatment, and, if you do, you should find out early enough that you will have lost little ground if any.

In post #13 viperfred noted that there is no test than can determine if prostate cancer is indolent or a potential killer. That is certainly true, but the active surveillance experts now have a set of tests, in the context of success/failure/side effect data going back as far as 1995, that gives very high odds of success in avoiding unneeded treatment or timely treating cases that need treatment.

Good luck working through all the options, and keep on learning!

Take care,

Jim