Thoughts on prostate cancer…3 years out

Three years ago I found myself in a tough spot to put it mildly with a prostate cancer diagnosis at age 42.

In October 2009 I had a mildly elevated PSA test result (see more on that below) leading to a prostate biopsy.

At the end of that month I had just received the news that my prostate biopsy had come back positive and the results indicated I had a very dangerous cancer.

This was not a “watchful waiting” kind of cancer, but more like “I’m going to kill you if you don’t do something” kind of cancer.

The pain and heartache I’ve been through because of that cancer are still clear in my mind 3 years later. These experiences range from the literally torture-like prostate biopsy to surgery to countless other indignities and horrible things I’ve been through because of the cancer. But also clear in my mind are the innumerable nice things that so many different people have done for me. A huge thanks to my family for helping me through this. All the kindnesses make the bad stuff seem so much less powerful and helped me retain my human dignity and spirit even under the most terrible circumstances.

Back to when I got the news…there’s really no way to adequately describe the feelings one has at such a time.

Many things were swirling through my mind.

Is my life over? Will I get to see my daughters grow up? How is this possible to have an “old man’s cancer” at age 42? What will the surgery mean for me? Will I also need radiation or chemo?

Will my life ever be the same again?

Now, three years out from that crazy time when it felt like a bomb had been dropped on me, the answer to that last question is most definitely “no”.

Life is not the same. It couldn’t be.

At the same time, I’m doing pretty well.

I just got my latest PSA test results. PSA is the blood test to monitor for the return of prostate cancer in patients like me and its possible first diagnosis (also like me) in men in general.

My latest PSA blood test result at 3 years out from my prostate cancer surgery back in November 2009 is “undetectable”.

What this means is that I’m still in long-term remission. I feel relief more than anything. As my doctor said very wisely to me, while prostate cancer just like most cancers can honestly not be sure to have ever been cured, I should live my life “considering myself cured unless proven otherwise”. I’m trying to keep that mentality. I recall while waiting in the waiting area for one of my appointments with my doc a man next to me was there, he said, because his prostate cancer had returned 14 years after surgery….14 years….

The cancer could come back and I know that, but at this point you can’t get better than “undetectable” and now more than ever in life I know there are no guarantees of anything. So I’m not complaining, but quite the opposite. I’m feeling how lucky I’ve been all things considered.

In fact, maybe someday I’ll have the “luck” of dying of something other than prostate cancer. Yes, I’m being sarcastic in a way because going through cancer makes it abundantly clear that death awaits us all. I also believe that a sense of humor and laughter help one deal with all the horrible stuff.

St. Baldricks head shaving fund raising
St. Baldricks head shaving fund raising withe prostate cancer sometimes on my mind. Paul Knoepfler and Ralph DeVere White.

In some ways my life is actually better now than it was before the cancer. That’s not a cliché, but reality. I’m more appreciative of the life I have and the people in it than I have ever been.

Why?

Because I know how fragile life is.

I’ve always loved science, but if it was possible, cancer has made me love it even more.

I’m gutsier in life including having my head shaved to raise money for the St. Baldrick’s Foundation in support of children with cancer. See picture above of me with my freshly shaved chrome dome (left) from earlier this year with UC Davis Comprehensive Cancer Center Director Ralph deVere White (right).

I feel very fortunate to have the job I do as a professor doing what I love as a researcher and teaching amazing students and working with wonderful, brilliant people, including especially the people in my own lab. Thanks, you guys!

Cancer also prodded me on to wear a second hat (or lab coat) of patient advocate (including doing this blog) that I find very rewarding as well and I am so happy to have met all these wonderful patients. Some are cancer patients and some are folks considering stem cell treatments. I’m trying to make a difference.

I think I’ve come to grips in a better way with mortality. A big part of cancer recovery is accepting life for what it is. A messy, scary, exciting, bumpy ride that always ends with death for all of us. I suppose it can also be a tedious, boring, half-asleep experience if one chooses so, but it still ends in death. So why not choose, as much as luck let’s you, to make of life what you can?

I don’t know what life has in store for me. My prostate cancer could come back. I could get some other cancer or be run over by a truck while walking my dog. I could die a thousand different ways and some day I will die of something just as you will, but while I’m alive I’m going to make the best of it and keep a sense of humor and so should you!

8 thoughts on “Thoughts on prostate cancer…3 years out”

  1. Hi Dr. Knoepfler, I subscribed to your blog recently and am glad to hear that you are doing well! I had a question about how your knowledge of medical research affected your reaction to the diagnosis. After the shock had worn off, did you research everything about prostate cancer in PubMed and other medical databases – or did you primarily rely on recommendations from your oncologists, or a little of both?

    1. Thanks for the kind words and the comment, Sam.
      My medical/biology/cancer knowledge did have a big impact on me after my diagnosis. Perhaps I knew too much for my own good. For example, from reading and talking to people over the years I believe most cancer patients after treatment still have cancer cells floating around in them so probably the phrases we hear so much “cancer free” and “cured of cancer” are myths. On the other hand, if one’s cancer does not clinically return, then in effect they are cured even if they have a million cancer cells still in them, perhaps dormant.
      I did research a great deal about prostate cancer and felt fortunate to have a doctor who is not just a clinician, but also a top notch researcher. We talked about my situation both as patient-doctor and also as colleagues I felt. I trusted him 100%, but also did a huge amount of reading. One challenge for me was I was an oddball as a cancer patient as almost no one ever gets prostate cancer diagnosed at age 42. Since my diagnosis and treatment I have met so many prostate cancer patients, but I am the youngest prostate cancer patient I am aware of. It’s really not clear if someone diagnosed at 42 really has the same kind of cancer as someone say diagnosed at age 72.
      I sometimes find myself in a tough position when I meet people who say stuff like “my husband has now made it out 4 years from his prostate cancer and his PSA is normal, so he’s CURED!” I really don’t know what to say…especially when I met a guy who’s prostate cancer came back 14 years after surgery.

  2. Wow Paul. That’s an important story to share! I can so relate to wondering if you are ever going to have a life again because of a diagnosis. You’re right keeping a sense of humor is so important. When faced with your own mortality, it makes things fall into priority, rather easily. Doing what you love, surrounding yourself with loved ones, and keeping a sense of humor are all vitally important in the recovery from any illness. Equally as important as any medical treatment! Congratulations on your recovery!

    1. Thanks, Jennifer. I wish all biomedical scientists well, but I wish they could know what it is like to be a patient with a life threatening illness somehow so they would realize they could to do so much more for good than just what happens in the lab.

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