Skip to Accessibility Tools Skip to Content Skip to Footer
My Post-Diagnosis Bomb Takeaways

My Post-Diagnosis Bomb Takeaways

I’ve told you about the bomb that was dropped when I got my diagnosis. As I think back on that time, I can think of some key takeaways from this that I think may be helpful to share with other men:

Know your PSA and what it means

Know your PSA, and the key thing with me was what they call the “velocity” of the PSA, or the fact that “something down there” (my non-medical term) is growing fast.  And at my age then (I was 5 weeks short of 69 when that bomb was dropped), it was very unlikely the prostate itself was growing that fast.

There is quite a bit of debate on the PSA testing, and for a good synopsis of that debate, the National Cancer Institute does it quite well. 

One caveat from my urological oncologist on not having your PSA tested – he said that’s really a debate by primary care physicians, and you won’t find a urologist who agrees with not doing PSA’s.

From a personal point of view, when they draw blood for any lab work such as cholesterol, they just draw a little more for the PSA so it’s no big deal getting it tested.  (And once you get prostate cancer, you will have your PSA tested for the rest of your life.  I’ve been tested quarterly since June 2013 until June 2017 and it will be every 6 months from now on as prostate cancer can come back 20 or more years later.)
 

And that guy called Gleason

Know the Gleason scores, which are graded 1 to 5 for the primary cancer and 1 to 5 for the secondary cancer, so mine was a 4+4 for a Gleason 8, which meant I had an aggressive prostate cancer.

A grade 5 is the worst form of prostate cancer and the fastest growing.  I said to my urologist when he told me I had an 8, “Thankfully it isn’t a Gleason 9 or 10”, to which he replied that some with a 9 or 10 are saved.

I heard Dr. Otis Brawley, the Chief Medical and Scientific Officer of the American Cancer Society, give a talk in which he said that Dr. Donald Gleason, who developed the Gleason grading system, argued that Gleason 1 through 4’s shouldn’t be called cancer because some doctors will treat them and Dr. Gleason strongly felt 1 to 4’s shouldn’t be treated. [Editorial note: this approach is now termed “Active Surveillance” and is considered a non-aggressive approach to treatment].

I felt Dr. Brawley, by re-stating what Dr. Gleason said about lower grades, was implying he agreed with Dr. Gleason as well.  For those who are interested, Dr. Brawley’s talk can be seen online here.

Thanks for reading this.

I hope it helps you get a better understanding of what goes into detecting prostate cancer and determining the best way to treat it.  And next time, I’ll talk about the choice of surgery, called a prostatectomy, or radiation.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ProstateCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • XFRE
    1 year ago

    I found out from a Dr. other than my own. My Dr. was unable to make it to my appointment. So Dr. number 2 came into the room and started talking to us about treatments and cure rates as though we knew what was going on. My wife and I looked at each other and said , “WHAT” ? He had no clue that we had not been told that I had cancer.

  • ninaw moderator
    1 year ago

    @XFRE, just want to jump in and say your story is wild. How could they forget to cover that “little” detail! I’ve actually heard a similar experience from someone about to undergo brain surgery – they’d never been told the risks until the day before. As Len said, sometimes the best advocate you have is yourself, and hopefully your loved ones. – Nina, ProstateCancer.net Team

  • Len Smith moderator author
    1 year ago

    I found out you need to be your own advocate on this journey. I found the book, Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer (make sure it’s the 2012 edition), to be of immense help to me in understanding my PC and all my options. But two caveats: the book is almost 6 years old and there have been some good changes since, e.g., MRI’s of the prostate, and secondly, my surgeon who knows Dr. Walsh, said his only possible fault is that he didn’t learn robotic surgery and his book is somewhat prejudiced toward conventional surgery for prostatectomies (I had the robotic, and having had open heart surgery to replace a valve, I can tell you that if you can avoid having your chest or abdomen “sliced open”, I would avoid it if there are better options.). Our best to you and let us know how you’re proceeding.

  • Poll