In a few days it will be the 5-year anniversary of my diagnosis with a very serious form of prostate cancer. So far since then I’ve been doing pretty well (knock on wood). I am still getting PSA tested and life still has a cancer thread through it for me.
As much as having cancer is a very personal and in some ways private experience, I have found it helpful to write and talk about it. I hope that my experience has been helpful to other men who are facing this cancer, some of whom I’ve met over the years. If you are dealing with prostate cancer and want someone to talk to drop me an email ([email protected]).
Every so often I have written a sort of a postcard view of how I was doing and what it felt like to have cancer at that point, often including images. I have linked to some of those postcards at the end of this post and sprinkled the images from those posts throughout here.
Today I’m thinking about the question: how did I get here and where is the prostate cancer world going?
It all started when the cancer came out of the blue for me at age 42 as a dangerous form of prostate cancer. I had surgery. I’m not cured. Instead, I’m in what my doctor calls “long-term remission”.
I still don’t quite know where I belong in the prostate cancer world. I’m sort of a kid in that world. I remember the first time I went to see the urologist and found in the waiting room that all the men also there seemed like parents/grandparents to me in terms of their ages. Being diagnosed at age 42 feels weird when the average age of diagnosis for this disease is roughly age 68. I’ve never met anyone diagnosed at a younger age with prostate cancer than I was. I’m sure they are out there, but it feels a bit lonely in a way.
It’s concerning that I may have more company with other young men in that the rate of prostate cancer in young men has been rapidly increasing and scientists do not seem to know why. It does not seem to be explainable entirely as a case of a change in diagnostic tools.
I had a lot of questions when I was diagnosed and frankly I still do not have answers to these for the most part today. Do younger men diagnosed with prostate cancer do better or worse than older men? The literature is unclear. Is prostate cancer in a 42-year old different than that of say a 70-year old man?
In the almost five years since I was diagnosed, unfortunately I haven’t seen any blockbuster new prostate cancer treatments emerge. As both a cancer survivor and cancer researcher, I wish things would speed up. When I read about prostate cancer treatments in the pipeline for recurrent prostate cancer, somewhat depressingly so far the “successes” prolong patient life by a few months, which frankly to me seems pretty disappointing. There is hope for new treatments that could be game changers.
Here are my previous prostate cancer postcards. See if you can match them up with some of the pictures in this piece.
- January 18, 2011. My Cancer: how I became an advocate too.
- February 10, 2011. Cancer stem cells
- November 30, 2011. What I learned from Steve Jobs
- March 13, 2012 Top 10 cancer myths and urban legends
- April 6, 2012. PSA testing
- April 18, 2012 Vitamin D: helpful or hype-ful?
- May 26, 2012. Why I think the national recommendation to stop PSA testing is dumb.
- July 8, 2011. 584 days into my battle with prostate cancer
- July 18, 2012. Do Vulcans get prostate cancer?
- August 6, 2012. Why ‘cure’ is a 4-letter word for those with cancer: thoughts from a survivor and researcher
- August 12, 2012. Giving Prostate Cancer the finger!
- November 12, 2012. Thoughts on cancer…3 years out