Do You Have a Personal Health Record?

As an "accidental prostate cancer survivor," I'm now a big fan of personal health records (PHR) and annually reviewing what's contained in those records. A movement toward creating PHR's is underway. Microsoft has their Health Vault and Google has released the beta version of Google Health. I've just started to test them so I can't provide an evaluation, but it's a step in the right direction. The Robert Woods Johnson Foundation has an innovation program underway to move the PHP movement forward. Just visit the Project HealthDesign, a RWJF program, to see program details. Send us a note with your experiences if you are using a PHR.

New AUA Prostate Cancer Screening Guidelines

We are happy to provide a link to the AUA's (American Urologic Association) latest prostate cancer screening guidelines. Just visit the site and you can download a copy of their guidelines brochure.

I would like to note that the guidelines recommend an annual PSA for men beginning at 40, along with a DRE (digital rectal exam). Although I am not a physician and do not provide medical advice, I suggest that men have a Free PSA test if their PSA test comes back positive. I say this because in my case my two tumors were located on top of the prostate where they could not be felt by DRE. Fortunately, my urologist requested a Free PSA test (your Free PSA value should be equal to or greater than .25 (25%) of your total PSA, and the tumors were detection prior to metastasis. If your Free PSA/total PSA is less than .25, it is an indication that a tumor may be present and you should consult your physician. If you do not have a physician (and you should!), you can obtain these tests on your own from an independent laboratory.

Remember, it is not the absolute PSA value that matters most, but the change from year-to-year. Should your PSA value change approximately .75 or more from one year to the next, you should see a physician immediately.

Want a little adventure in your life? Join us for all or part of the 2010 Tour de USA for prostate cancer awareness or join us on the Tour de Skyline Drive this August 22-24.

Virgin Tour de USA?

Hello All: I'm still working on generating some interest in the Prostate Cancer Tour de USA in 2010. The good news is that we have received our formal "Tour de USA" trademark registration from the US Patent Office. The bad news is that we still are challenged in getting men to think about testing annually for the Number Two cancer killer of men, and in getting companies interesting in engaging with us. That said, we continue to save lives one man at a time as we talk to men about the disease.

I just submitted the Tour de USA for consideration as one of the Virgin Group's "Virgin Unite" charity initiatives. It would be great to have Richard Branson ride a segment with us.

The 2010 ride will go from statehouse-to-statehouse and we need volunteers to make arrangements for those stops. So, it you have a few minutes and the desire to help, check out the route in our previous post and send us an email to see how you can help.

Tour de USA Route

The inaugural Tour de USA for prostate cancer awareness will take place in June, 1010. The ride begins in Sacramento and the tentative routing is as follows: Nevada, Idaho, Wyoming, Colorado, Nebraska, Iowa, Wisconsin (H-D headquarters), Missouri, Illinois, Ohio, West Virginia, Washington, DC, Virginia, North Carolina, Tennessee, Arkansas, Oklahoma, Texas (panhandle), New Mexico, Arizona, California.

We are looking for assistance coordinating PR stops at Harley-Davidson dealerships along the way. There also are a few spots on the core group who can ride the entire distance.

If you are interested in riding or would like to help, send an email to TourdeUSA@29000men.org.

"Just Do It" Seems to Hold True for Prostate Cancer Prevention

Rather than just surviving prostate cancer, wouldn't it be better to simply prevent it in the first place? You bet! But how can we do that when we don't know precisely what causes cancer?

Research is beginning to demonstrate a connection between lifestyle habits - exercise levels and nutritional patterns - that seem to have an effect on cancer occurrence. For example, a 2008 report cited in the Daily Mail in the United Kingdom revealed that men working in office jobs experienced a higher rate of prostate cancer than men that moved around during their workday. These results are in line with an American Cancer Society study that estimates that a third of all cancers can be traced to inactivity and nutritional shortcomings.

I'm not a physician, but it seems to me that "Just Doing It" - to paraphrase the Nike slogan - is a free and easy way to prevent yourself from becoming one of the one-in-six men who will experience prostate cancer. So, if you work in an office, it's time to get moving!

If you like to bicycle, consider joining us in August 2009 at the Tour of Skyline Drive in Virginia. We'll spend two days riding along the Skyline Drive in the Shenandoah National Park.

Remember to "Test. Track. Treat. Live." Track your PSA annually and look for a change of .75 or more, and ask your colleagues (35 and older) if they are testing.

Best regards, Robert

What About Prostate Cancer Recurrence?

This is the opening post in my personal process of determining if my prostate cancer is recurring. As is the case with PSA testing, there are differing views concerning when recurrence can be detected. Most PSA testing is done at the one decimal sensitivity level, i.e., at a sensitivity of ".1". Newer ultrasensitive tests can detect PSA levels at a sensitivity of ".01," which is an order of magnitude more sensitive. The Clinical Practice Guidelines in Oncology for prostate cancer (according to the National Comprehensive Cancer Network) indicate additional treatment for men who have had a radical prostatectomy (I had an RP in 2003) if they have a detectable PSA level of >.3 ng/ml that increases in two or more subsequent measurements following a period of no detectable PSA. I fall into that category, expect that I my PSA measures over the past 18 months have risen from undetectable, to .01, to .08 with the most recent test at .06. Having spent a career in the military, I'm always focused on proactive response, so I am in the process of meeting with a physician that believes in early detection and treatment. My current task is getting my medical records sent from my surgeon (who believes I am 'cured') to my new physician. So far, my written request has been lost twice. If you are reading this post and are in a similar situation, I would enjoy hearing from you. Test. Track. Treat. Live.(TM)

Due Your Own Due Diligence!

The controversy over the utility of the PSA for lowering the prostate cancer continues, which is a good thing because it hopefully will draw men's attention (better yet, draw women's attention) to the critical importance of annual testing.
While some members of the medical community continue to comment about "over treating" prostate cancer, approximately 29,000 men die each year in the US from the disease, and the incidence rate for prostate cancer in the 20-49 year cohort is increasing. Spend a few minutes at the National Cancer Institute's online database (Surveillance Epidemiology and End Results) at http:/seer.cancer.gov/faststats and you will see how much we do not know about this disease - the most current data set is three years old. What I believe it shows is that early detection (note that the PSA test came into use in the early 1990s) has increased the rate of detection and lowered the death rate. The worrying aspect is the continuing rise in PCa incidence in young adult males.
You can find an interesting article about the PSA testing controversy in the online version of the San Francisco Chronicle on this issue at . The author, himself a prostate cancer survivor and the CEO of Soar BioDynamics Ltd., makes the point that rather than discarding the PSA test perhaps we should be using it as part of a more comprehensive diagnostic process. Prostate cancer is still the most common male cancer is the US and is the number two cancer killer in men. Prostate cancer is not the harmless, indolent disease that it is often portrayed. One in every six men will be stricken with disease - perhaps more if the trends in the SEER continue. If you read this post, I like to hear your comments. If you know a man who is 35 or older and not testing, encourage them to begin. Test. Track. Treat. Live.(TM)