Our Stories

Tell Your Story and Help Others

This is the place where I hope prostate cancer survivors, their families, and significant others will come to tell their prostate cancer story for the benefit of current and future prostate cancer survivors.

Many of you already have posted on the Tour de USA blog.  The Tour de USA is complete, so I’m transferring the stories to this blog.

We don’t need your name, but your experiences and tips will be invaluable to those who, unfortunately, will follow in your footsteps.

Looking forward to hearing from you.

Warm regards, Robert.  Prostate Cancer Survivor, Class of 2003.

3 Responses to Our Stories

  1. John says:

    I am a 53 year old male, had regular prostate exams and never had any pain or symptoms of having prostate cancer, no known prostate cancer history in my family. I was diagnosed with prostate cancer in April 2009 after my doctor noted a rise in my PSA. I had a biopsy done at the urging of my girlfriend. Unfortunately it came back as postive for cancer, I had a gleason 9, had Robotic Prostatectomy followed by 38 radiation treatments and now I am on Lupron and Casodex for Androgen-suppression therapy. All this in two years and now my PSA is once again rising. I urge anyone and everyone who reads this to have a PSA done it is a simple blood test that could possibly save your life.

  2. Here’s a recent LinkedIn post from a prostate cancer survivor discussing the USPTF decision to recommend ending prostate cancer testing.

    Group: Beat Prostate Cancer Group
    Discussion: 5 prostate cancer myths discussed by UC urologist
    There’s an old Arab saying, “If you want to know how well the medicine works, don’t ask the doctor, ask the patient.

    If the U.S. Preventative Task Force’s recommendation would have been followed eight years ago by my urologist, I probably wouldn’t still be alive.

    With a Gleason score of 7, no symptoms, and cancer cells that had migrated into the lymph glands and into the soft tissue beyond the prostate, someone else undoubtedly would be telling my story.

    Although survival statistics for non-treatment “protocols” are often cited as justification for less aggressive intervention (e.g., 85% of subjects survived 5 years), most ignore an important consideration: How do you determine the variables that places someone into the “did not survive x years” category–before they select a treatment option.

    And I would venture a guess, that even after they die, few if any researchers are interested in why the intervention protocol failed FOR THEM.

    Whether to test or not, may be an interesting statistical problem for 20 or 30 something old researchers at the NIH, but for those of us who had to, and still have to choose between competing protocols it may determine if our lives are measured in months or years.

    You may want to read two articles I wrote on these issues from the perspective of someone who is not enamored with the medical establishment’s view of patient decision as a statistical problem, rather then one with life and death consequences.


    Posted by Stan

  3. I want to say Thank You for doing this for Prostate Cancer Awareness!

    On June 20, 1983 my husband and I had our first date. Each year after that we celebrated the anniversary of our first date. But then on June 19, 2009 our lives had changed. My husbands urologist wanted to see both of us in his office. We go into his office and he prepares us for the horriable news! Ray you have Prostate Cancer! Both of our hearts sunk to the floor, then the tears, emotions and then the questions. My husbands urologist told us the options and said we needed to become students of Prostate Cancer.

    I wanted to find a support group for both of us together as we have been a team for almost 29 years now. I thought it was going to be easy since this disease is a couples disease, but it was not at all easy. Every group I called or contacted their responses were…Sorry women are not welcome. But I did not give up! I found a group that welcomes women with open arms. August 10, 2009 was or first meeting my husband was able to hear other men’s diasnosis and plan of attack. That night was the night my husband made up his mind to do robotic surgery.

    His surgery was done on October 12, 2009. It took almost 8 hours as his cancer had spread outside the Prostate into the lymph nodes. My husband is on Lupron shots and currently is still in remission. He just got his PSA results on Tuesday and it was 0.1! Both of us were very happy.

    I had learned at one of our meetings that the prostate is the size of a walnut. Our leader passed it around the room and when it came to me. I had a vision! I turned it into our group mascot and now he is called Petey the Prostate Crusader! He is very active and takes many adventures! He has his own blog and shares his adventures there with others, our group members always look forward to Petey’s Adventures!

    His blog is… peteytheprostatecrusader.blogspot.com He also has a Facebook fan page.

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