Originally Posted by sbear1102
... It will be extremely helpful to us we consider all the options. ... I had a question for you about your dx. You mentioned that all your pre-clinical testing showed that the prostate cancer had not spread and was localized. Did you have a lymph node biopsy? or x-rays? My husband's urologist didn't think it was necessary for him to get further testing, and based on the pathology findings, felt that it is localized. I am wondering whether he should undergo additional work-up to r/o the possibility of metastatis. I feel pretty good that it hasn't, but I guess I'm being extra cautious. I'm sure I will have more questions for you, I will think of them as I discuss this further with my husband. Stay strong.
I too would like to welcome you and your husband to this board that all of us would have liked to have been an area of no concern and irrelevant in our lives.
kcon has written such a fine post, from the mind as well as from the heart, covering so much of what needs to be said. He also has the perspective of a young patient.
There is one comment in his response where the radiation doctors could probably make a convincing argument in their favor. It's where kcon wrote: "One of my considerations for radiation was that it doesn't remove the cancer...it delays progression; it slows the cancer down. I learned that taking the radiation approach in my 40's would probably lead to having to deal with it again later in life. " Research for more recent
radiation technology can claim to destroy the cancer potential of the tissue it attacks with an adequate dose, though the tissue itself is not destroyed (in contrast to a technology like cryo therapy). If all the cancer is in the range of the radiation, and if an adequate dose is given, research very strongly indicates that that cancer is gone and will not be a further problem. One of the reasons for what kcon said is that there was a problem with earlier
external beam radiation as a dose around 60 Gy would not always kill all the cancer even when it was on target, though it would slow it down as kcon said. Now, radiation doctors know that higher doses are needed to assure that targeted cancer in the prostate is killed, and now it is a rare prostate cancer indeed that can escape an appropriate dose of properly delivered radiation, if that cancer is all in the range of the radiation. (You may also hear about a newcomer - CyberKnife with Stereotactic Body Radiotherapy (SBRT) dosing; that uses a much lower dose, about 37 Gy, but it is delivered more intensely in five sessions, which seems to make it about as effective as conventional radiation.)
By the way, "more recent" does not mean "yesterday." Dr. Dattoli now has follow-up results in the 14 to 20 year range, and many years of successful followup data are available from other researchers too. Much of the radiation research has survival and recurrence tables with a very nice characteristic: while the rates of success decline a bit as years pass, (similar to rates for any other therapy), the patterns tend strongly to flatten out after a certain number of years have passed. In other words, you see very few additional failures after those times. That's a strong indicator of success over the long-term, over the rest of our lives.
There are a number of good books on radiation that make this point effectively based on published studies. The one I know best is by Dr. Michael Dattoli and his co-authors, "Surviving Prostate Cancer Without Surgery - The New Gold Standard Treatment That Can Save Your Life and Lifestyle." The two books kcon recommended are great for an overview and orientation on key empowering aspects for all therapies and decision making (the Primer) and for surgery (the Walsh book, also covers aspects beyond surgery), but a good book by a radiation doctor like Dattoli would give you key information about radiation.
You mentioned that you were still looking at all the options; do you know that cryo therapy is another option that is now established? Dr. Gary Onik, one of the world's experts in cryo, and Dr. Centeno wrote a book that covers cryo well.
You asked about whether to strive for more information about the nature and extent of your husband's cancer. Dr. Strum, medical co-author of the Primer, represents the physicians who like to get as much information as they can in order to do the optimal tailoring of the therapy to the patient. For instance, he would like all new patients to have a PAP (not the one you know, rather Prostatic Acid Phosphatase) test run. (It's a simple blood test, like a PSA test, and the needed vial of blood can be drawn when blood is drawn for other tests with the same needle stick.) He cites research behind his recommendation in the Primer. Dr. Dattoli also feels that test is important for indicating whether radiation will be successful. (Other research shows that it helps predict the success of surgery too.) I believe Drs. Strum and Dattoli. On the other hand, I respect other doctors who feel that the PAP test does not add information that is independent of what you get from other tests. This is typical of the issues that are judgement calls, though calls informed by research, experience and reason.
Bone and CT scans, though, are on Dr. Strum's bad list if patients have low-risk case characteristics, and it appears your doctor has not recommended them, which is a good thing in my layman's opinion. (I'm a now savvy survivor in my tenth year with a challenging case, so I've learned a lot, but I've had no enrolled medical education.) Fortunately, the respected American Urological Association (AUA) has weighed in on the issue, also recommending that they add little or no value for men with low risk cases. You can see a recently updated thread about these tests.
As far as sampling lymph nodes, either in advance or at the time of surgery, the AUA has weighed in on that too, also advising that neither be done for low-risk men. These AUA recommendations are available to us in an 82 page document entitled: "Prostate-Specific Antigen Best Practice Statement." You are in luck as they update this document about every ten years, and they just updated it last month.
Your husband's case statistics look good, but there are at least a couple of steps you both could take. What seems like the most important is to make sure that Gleason Score was developed by a pathologist who specializes in prostate cancer, as contrasted with a general pathologist who handles tissue samples from boys and men, girls and women, for cancer and all other comers. If not, then it is really wise and important to get that sample reviewed by a lab that is expert in prostate cancer pathology. The Primer makes recommendations.
A second step is a low-chance-of-reward but high-payoff-if-successful tactic: a leading-edge-of-the-art Combidex scan of lymph nodes. That scan is excellent at finding metastasis to lymph nodes - far superior to surgical sampling of nodes. On the other hand, (1) it's unlikely that nodes will have metastases for low risk cases, and (2) competent Combidex scanning is now only available in the Netherlands. I'm not sure whether insurance would cover the expense for a case that appears so far to be low risk. One of us vets should start a thread about Combidex. Till that happens, you can get great information from the Prostate Cancer Research Institute, a non-profit organization, which devoted much of a recent issue of its newsletter (free, but they depend on voluntary contributions) to Combidex.
Be sure to checkout some of the posts on lifestyle tactics to help counter PC on this board. These tactics involve nutrition, supplements, diet, exercise (aerobic and strength) and stress reduction.
Take care, and I hope you don't have too bad a case of information overload