IADT3since2000

Hello R,

I'm sorry your family is having to go through this, especially with what appears to be a challenging case for your father-in-law. I do want to give you a first-hand assurance that there IS some basis for optimism - not wild-eyed, jump-up-and-down happy optimism, but optimism nonetheless, based on advances in treating prostate cancer that have emerged especially during the past ten years or so.

First, I'll join the chorus behind the excellent key points made by medved and daff. I would have replied earlier to your 9/11 post, but I had just finished an intense review of prostate cancer research proposals as part of a review panel and was going on vacation. I hope this reply will still be timely.

Now my first hand account:

I was diagnosed in December 1999, following a routine physical at the end of which I had to insist on a PSA test - my first ever, despite the doctor's suggestion that he did not think I needed it since I was feeling fine and everything he saw looked good. He was mighty embarrassed and I was stunned a few days later when the report came back with a PSA of 113.6 and a scrawled notation "Get an appointment ASAP."

That appointment, first thing the next morning, did not go so well, in retrospect. My wife was with me, and the urologist giving me my first DRE told me my prostate felt hard throughout and then, while I was out of his office, practically moaned to my wife "I could have done something if he had only come to see me sooner." You can imagine how my wife felt! Nonetheless, I believe he did a decent biopsy a few days later, which revealed a Gleason 4+3=7 cancer, with all biopsy cores positive, most 100% positive, as well as another risk factor. Due to difficulties communicating and a clash of his approach and my expectations, I was soon looking for another doctor.

I hope your family has or had a good and insightful experience with the doctor. That happens frequently, but often it becomes clear that someone else would be a better fit, and many patients look around. Moreover, especially for a challenging case, second (and third, fourth, etc.) opinions should be par for the course. I'll be surpised if the doctor does not recommend other opinions. It doesn't mean he is not confident, it just would mean that he realizes the prostate cancer field is too complex for any one doctor to master it all.

There are two books your father-in-law or his family advisors really need to get: "A Primer on Prostate Cancer - The Empowered Patient's Guide," by Dr. Stephen B. Strum, MD, and Donna Pogliano, rev. ed. 2005, and "Beating Prostate Cancer - Hormonal Therapy & Diet," by Dr. Charles Snuffy Myers, MD, 2006. I often recommend these, especially the first, for patients who do not have challenging cases, but for those of us who do, I consider them essential. The Primer deals with all of prostate cancer with an especially strong focus on helping us make decisions, but it also has an extraordinarily good and long section on the often misunderstood strategy of hormonal therapy from the viewpoint of a highly experienced expert, Dr. Strum. One of the myths about hormonal therapy is that it does not work very long. That was true and may possibly still be true, for patients with widespread and painful bone metastases, but prospects are improving even for them, with some men experiencing striking reversal and even elimination of bone mets. For the rest of us, hormonal therapy can be a highly effective, long-term strategy, helping us turn the disease, with a little luck, into a chronic and tolerable disease instead of one that is greatly burdensome and lethal. All this said, about 28,000 of us will not survive this year, so we need to do what we can against the disease.

Dr. Myers, another of our foremost experts in hormonal therapy, gives us a very easy to read and highly encouraging, informative book. In fact he starts it with a chapter on optimism, and he ends it with several case histories of men with PSAs that reached into the thousands who are now doing well. Dr. Myers also publishes a newsletter, the Prostate Forum. I believe it would help any prostate cancer patient, but to me it is like gold for those of us with challenging cases. He's been publishing since 1996, three years before being diagnosed with his own challenging case of prostate cancer. (He practices what he preaches and is now doing very well.) I credit him with much of my success. Though I have never consulted him officially, I and my oncologist treat his views with great respect, and I follow his dietary, exercise, and other recommendations closely.

A recent issue of his newsletter dealt with unusual cases of high PSA patients with vigorous spread of cancer in the prostate and around it who, for reasons partially understood, did not suffer from metastatic spread to bone, and who were doing surprisingly well. Other issues have addressed dealing with spread to the bones as well as to organs and other soft tissue areas.

Following my biopsy, I had a bone scan and CT scan, which typically are not worthwhile for low-risk patients but which are quite appropriate for high risk patients as medved indicated. Both of mine were negative. That's not that uncommon for patients like me with initial PSAs around 100.

I'm now nearing the end of nine years as a survivor, using only intermittent triple hormonal blockade as my therapy (with bone density support and a special drug to prolong my off-therapy periods), and instead of dying at five years as predicted by two excellent urologists , I'm doing fine. In fact my quality of life during most of my long off therapy periods (just completed the second) is the same as it was before I was diagnosed, except I'm now 65 and experiencing some of the typical aging effects. I know I am not cured, and I don't expect to be with current technology, but the cancer appears to be under excellent control.

There's a lot more to say, but I'll close by saying I'm not especially advocating my therapy strategy, though it is an option. My impression is that leading doctors like Strum and Myers would suggest some kind of debulking of the cancer as well, even if cure were not seen as one of the likely benefits, as well as perhaps hormonal therapy, and even perhaps a short course of chemo or other therapy. But not being a doctor and without any enrolled medical education, all I can offer is an impression and information.

Hope this helps, and please keep in touch. I'm sure that daff, medved, I and many others on this board wish you and your family the best and will be glad to help.

Jim