Hello prius 2008,
Welcome to the board
, though I'm sorry you and your husband have had to seek us out.
I will have more time to respond later, but I wanted to give you a few quick comments. I too have had a very challenging case, though my Gleason was "only" a 4+3=7; all cores were positive, most 100% with perineural invasion noted, and my PSA, first ever, was 113.6. Surprisingly, scans were negative. I'm in my tenth year since diagnosis with intermittent triple hormonal blockade as my therapy - no surgery or radiation; I'm doing well and feeling fine, though I have some quite tolerable side effects.
Would you mind giving us your husband's recent PSA history - dates and scores - for the past couple of years? That is an important clue to round out the picture you have given.
You and your husband may want to get a better look at his situation before going ahead with the surgery, especially since he is near the point where the personal costs are considered to balance out benefits, especially with a highly aggressive case. There are two existing scans that can give a far better idea of what is going on beyond the immediate area of the prostate. (The ProstaScint is not normally done with low-risk cases because of the expense and low-likelihood of finding metastases.)
One has been around for many years and is known as the ProstaScint scan, or as the Fusion ProstaScint scan in its much improved form where it is linked with a CT and or PET scan. That scan can detect prostate cancer metastasis to soft tissue anywhere in the body if the tumor is larger than a fairly minimal size, though it is not so hot for metastasis to bone, where other scans are superior. Usually a much less expensive bone scan like the one your husband had is done first, because if there is spread to bone, it's obvious just from that that surgery alone is going to be inadequate and the ProstaScint's added information may not then make much of a difference in treatment decision making. I had a ProstaScint scan in early 2000, and, surprisingly, it was negative.
The other scan is quite new and not yet approved by the FDA. It is known now as Combidex, and in simplest terms, it is excellent at determining spread to lymph nodes, though apparently not to other soft tissue beyond the prostate. It is also good to excellent (not sure which) at indicating the location of prostate cancer within the prostate. Actually, samplying lymph nodes surgically gives only rough assurance, as only easy to reach nodes are sampled; in contrast, Combidex permits a scan of all nodes; it appears to be far, far superior to laparoscopic sampling. Unfortunately for Combidex, the only site I know of that is regarded as highly competent with that scan is in the Netherlands. That imaging clinic does take US patients.
Both scans are described in the outstanding book "A Primer on Prostate Cancer - The Empowered Patient's Guide, by Dr. Stephen B. Strum and Donna Pogliano. In my opinion, that book is on the absolute "MUST HAVE" list for patients with challenging cases. The second but not the first edition describes the Combidex scan (both cover ProstaScint and Fusion ProstaScint, including great color images). If I were you, I would get that book as soon as possible.
The Prostate Cancer Research Institute and the Life Extension Foundation (LEF) both have newsletters that I get, and both have recently featured great articles on the Combidex scan, with color images. (Dr. Strum, an early proponent of Combidex scanning and author of the Primer, is associated with both institutions. Incidentally, the LEF does a lot of good work in my opinion, but they hype their products to the sky often based on what I consider very preliminary animal and laboratory work. On the other hand, a lot of us think that some of their products are outstanding.) (I hope to review the articles on Combidex for the board but haven't gotten to it yet and haven't seen a review from anyone else.)
Prostate cancer's first metastatic targets are predominantly the bones and lymph nodes. Spread to the bladder and bowel are certainly possible, but are not that likely.
I strongly recommend you get some "second" (and third, fourth, etc.) opinions before going through with the surgery. That may be your and your husband's final decision, but it should be an informed one. I admire your doctor's candor in saying that he was not that familiar with challenging cases, but on the other hand, that warrants talking to some doctors used to working with challenging cases. A medical oncologist, especially one with ample experience with prostate cancer, ideally one who specializes in prostate cancer (rare), and a radiation oncologist are bases you both really need to touch.
Based on my experience as a layman whose been at this for more than nine years now, I think there's a high likelihood that you both may turn away from surgery, or at least combine it with radiation, with hormonal blockade, or both.
Finally, I recommend you get one other book: "Beating Prostate Cancer: Hormonal Therapy & Diet," by Dr. Charles "Snuffy" Myers. Even if your husband does not use hormonal blockade, even if he does not use some of the great diet, nutrition and supplement advice, you will both get a tremendous dose of well-based, well-supported optimism from reading that book. Incidentally, Dr. Myers is a ten year veteran of his own challenging case of prostate cancer. He is a world reknown medical oncologist who specializes in prostate cancer, and he publishes a newsletter, the Prostate Forum, that I regard as gold for patients with challenging cases. (It's also highly informative for the rest of us.)
Please feel free to ask any questions. We have participants here whose experience covers a wide range of what happens involving prostate cancer.
It's very hard to keep a positive outlook when you are reeling from news of the diagnosis, especially one that is challenging, but I hope that you will soon again find joy in life. Keep your spirits up!