(POC: Dick Healy – firstname.lastname@example.org)
As some of you know, we have been running a class prostate cancer support group since 2002. The aim of our support group is to provide information, based on our experiences, to newly diagnosed classmates. That information is intended to better arm the newly diagnosed for their subsequent conversations with urologists and treatment specialists. We are also linked with several other class support groups (55-59, 62, 64 and 71), which widens our experience base considerably. Our groups share information from a number of open sources which provides us all with some degree of knowledge about what is currently happening in the PC world. Perhaps 30-40 messages, usually based on new study results, float between the groups yearly. I maintain an extensive library of those sources of information, including case studies of most of our classmates who have been treated. Not all the reporting on study results is high quality. In fact, some is downright poor. We try to point out shortcomings.
In my ’60 database, I list 64 classmates who have been diagnosed with PC. About 35 more have been treated for BPH, other prostate maladies or high PSA readings. I expect there are 5-10 more classmates who have been diagnosed that I know nothing of. We have had about ten classmates, to my knowledge, die from or with PC. Two died without treatment, the cancer having spread before it could be effectively treated. Another died of a recurrence of PC after participating in an experimental study with the drug finesteride. Seven more, who had been treated for PC, have died of other causes. The first treatment took place in 1993, and the most recent is on-going (May 2014). All this puts us on the national average, and we have the expectation that others of us will be diagnosed as time marches on.
All of the remaining 54 of us have had our cancer treated in some respect, treatments ranging from surgery to several types of radiation (including one watchful waiting case which was later treated with radiation once pre-established markers were reached) to alternative options. At least four members notified us that they have been diagnosed with a recurrence of the cancer and are currently considering or undergoing follow-on treatments.
But the others seem to be doing well, at least thus far, at least to my knowledge. So, let me offer some generalizations based on what I think I know from our database and the information passing through our support forums.
First, the risk of PC (and other cancers) can be reduced through low-fat, well balanced diets, regular exercise, adequate sleep and low stress life styles. A paper on Preventative Measures follows.
Routine screening is a must so that the cancer can be detected early and treated before it spreads from the prostate. I believe our class figures are reasonably good because of aggressive treatment selection after the diagnosis.
The problem with routine screening is that it is largely based on PSA test scores, and those scores are not a totally reliable predictor of cancer (and, oh, yes, the digital exam, too). Research is being done on better tests, and one, the Beckman-Coulter Prostate Health Index (PHI), has been recently introduced. However, a high PSA reading doesn’t necessarily mean there is cancer, and a low reading doesn’t necessarily indicate the absence of cancer. The possibility of cancer being present may, however, be respectively higher or lower based on the PSA figure. A jump in PSA results (velocity) from one test to the next is a stronger indicator of the possibility of PC, and a biopsy can follow. Actually, the biopsy can be used in any situation of doubt, and some of our guys have had several. They used to be painful; now they are just a little uncomfortable. If the biopsy finds cancer, we know it is there, but even the biopsy can miss finding it. The biopsy is currently the only way to determine whether the cancer is aggressive, although the PHI test (a simple blood test) aims to assist in that determination. Included below is a list of books and websites for additional information on the subject.
Recent study results seem to argue that we are being over-screened for PC and if a cancer is found, over treated. These conclusions, of course, are based on percentages and the knowledge that most prostate cancers are slow growing (you’ll probably die from something else), just a few types being aggressive (you’ll probably die from the PC, if left untreated). The down sides of unnecessary treatment are the possibilities of incontinence and impotence following treatment. But the risk of either incontinence or impotence is much less now than it was even 10-15 years ago in that the surgical and radiation techniques have improved greatly.
Another factor is our age; as we age, treatment options become more limited and the likelihood of PC being diagnosed increases. But, we are for the most part still a young 75-79, meaning all options remain available to most of us. As we get to about 80 there is a reduced inclination of doctors to recommend aggressive treatment options (e.g., surgery).
So, what’s a guy to do? Stan Bacon (’58 Support Group), the man who was behind the formation of all our support groups, has a one liner I heartedly subscribe to: we are each a statistic of one. If a person wants to play percentages, be my guest. Our two early PC deaths probably resulted because those men chose not to be screened or were unaware that screening was available or needed. The relative well being of most of the rest of us is probably because we opted for screening and aggressive treatment following identification of the cancer.
If you’d like to join the PC forum, let me know. If you are diagnosed with PC at some point, you can correspond on the forum (or directly) with people who have already received one or more of the various treatments available. We really do try hard to be responsive and helpful.