E-LETTER #6 - GO TO INDEX FOR EARLIER LETTERS

Prostate men need enlightening, not frightening January 21, 2012 Farewell Gregg Gregg Morrison was one of the three of us who set up the YANA site. His wife Kerry learned how to set up the site and designed it: Gregg did the research and I wrote the words. He passed away very quietly and peacefully early on December 21, 2011 after a long struggle to return to better health. In the end his body had no more to give, and he had done his dash. Gregg was diagnosed in 1991 so made it to the 20 year mark - and still gave prostate cancer the slip in the end. His PSA was at normal levels at his last test but in the end the cumulation of living became too much for his body and he bore out Willet Whitmore's epigram: Growing old is invariably fatal while prostate cancer is only sometimes so. Depression - real or induced?   There is very little posted about emotional issues on prostate cancer sites on the Internet. I believe this is mainly due to our cultural issues. Depression is a particularly loaded word in our culture. Many associate it, however wrongly, with a sign of weakness and excessive emotion. I don't, at least when I am not depressed. Although it was more than fifteen years from my diagnosis, I felt I was headed towards the dark pit of depression in December 2011 and I thought it might be helpful if I shared my experience. I have put it on the site at DEPRESSION I am not saying that everyone can deal with the factors that cause their depression as easily as I have managed to deal with mine. I have had many years of practice. But I do believe that recognising that there are issues, recognising that some of these can be dealt with, recognising that it is not a weakness, recognising that if you can't handle it yourself, you should get appropriate professional help will get you over the line and back in the sunshine which is a feature of most of our lives after the shock of diagnosis and therapy has worn off. In one of my earlier (pre-prostate cancer) episodes of depression I was seriously suicidal. My wife Anthea has a way of dealing with things in fairly plain and simple language. She said to me "If you had a broken bone you'd go to a doctor. Your mind is broken - go to a doctor and get it fixed." I did go and I did get it fixed - and more importantly acquired the tools that helped me deal with my cancer diagnosis years later and, I think, helped me help others. PSA Anxiety   One of our Yana men recently posted this message on a Mailing List:: Well, I'm getting close to two years post surgery with clean (undetectable) PSA. My surgery was March 15, 2010 and my next PSA test is January 17. Am I the only one that at this point still begins to fret about a month before the test? I've heard it called PSA Anxiety. Although a well known prostate cancer activist once took me to task for even mentioning PSA Anxiety, denying there was such an issue, it is a concern, even among men who have been following their (low) PSA numbers for years. I do not usually get too anxious myself now that I have passed my main target survival date of fifteen years, but three years after diagnosis I wrote a short piece I titled WITHOUT HOPE which I believe sums up the position fairly well, based on what other prostate cancer men tell me. One of the replies on the Mailing List was a person who posts as A.Black, saying: It's pretty normal to be concerned. At the same time note that even if you experience PSA progression it does not automatically mean that you will also experience recurrence and even if you experience recurrence it does not automatically mean that you will experience metastasis and even if you experience metastasis something else may get you sooner. He referred to a page on his website - The Palpable Prostate which you should add to your Bookmarks. This is an excellent site for the man who wants to get a better understanding of th complexities of the disease with many references to scientific papers and studies. The one that A.Black was specifically referring to was Biochemical PSA Recurrence. As a personal observation, based on the updates submitted by Yana men and posts to Mailing Lists, I believe that there has been some signficant (and unannounced) change to PSA tests, perhaps by a major manufacturer, perhaps by many. I say that because I cannot recall any time over the past fifteen years when there have been so many "upblips" in PSA numbers in men who have had stable results, often for many years. One pathology lab has admitted that the new tests they are using increases a PSA count by 'up to fifteen percent' - that's quite a scary jump for some folk. Anyone with even a twinge of PSA Anxiety should find A.Black's page of interest. Updates and YANA-3 Thanks to those of you who sent in updates in response to the last E-Letter. If you're due for an update and haven't sent one in yet, please just take a few minutes to go to UP DATE YOUR STORY and send it in. There are many July 2010 updates outstanding. The holidays have impacted, as we thought they would on the development of the YANA-3 project although Mark Freedkin has managed to get some of the work done despite his other commitments. It seems likely that the current target date for system testing - the end of January will be extended to mid-February. Useful Links - including a FaceBook one Subscribe to this E-Letter Choosing A Treatment YANA Experiences Index If you want to see the latest stories and updates, click on the Updates link on this page Survivors Talk About Prostate Cancer YANA Forum Prostate Primer There is a new publication from National Comprehensive Cancer Network dealing with prostate cancer - NCCN Guidelines for Patients There is a good deal of sound information in this publication, which is in its second edition.