My current predicament of a post-surgery increasing PSA has me reflecting on terminology that I see used in discussions about prostate cancer, and some of it has been downright annoying to me. (Perhaps it’s annoying because I’m now 60 and can claim official curmudgeon status.)
But, if I’m being honest, I’m probably more annoyed with myself than with anyone else.
All of it centers around the use of the phrase cancer-free.
I see the “newbies” coming out of their first post-surgery PSA test jubilantly declaring themselves to be cancer-free with their first undetectable reading, as well as with any subsequent readings. Don’t get me wrong: It is something to celebrate. Hell, I did it. I declared myself to be cancer-free multiple times, well after my surgery.
But now, facing recurrence, every time I see someone declaring themselves cancer-free, I bite my lip and say to myself, “Just wait five or seven or ten years and see if you can still say that, Buck-o.”
“Bitter. Table for one. Bitter.”
Fortunately, my surgeon was very clear in telling me before the surgery what the chances of recurrence would be. He was managing my expectations with a dose of reality. However, one thing he didn’t introduce me to was the phrase, no evidence of disease.
No Evidence of Disease (NED) should be much more widely used to keep us all grounded in the possibility that, no matter how successful our first-line treatment appears to have been, there’s always that possibility of recurrence. “Cured” and “cancer-free” both give a false sense of security that none of us can count on.
So to those coming out of your prostatectomies, please declare that there’s no evidence of disease on your undetectable PSAs, and hope that you can continue to do that for the rest of your life. In doing so—in managing those expectations—you may be better prepared for that fateful day 54 months after your surgery when there’s now, in fact, evidence of disease. You’ll still say, “Crap!” (or some other string of colorful expletives that would make a sailor blush), but making the leap from NED to recurrence may be just a tad easier than from cancer-free to recurrence.
You can tell from my last few posts that I’m getting back into my writing for therapy mode (or, as a friend calls it, “verbal vomiting”). It is therapeutic for me to have an outlet for some of these thoughts; I can spew them and, once they’re out, put them behind me.
Thanks for putting up with them!
15 thoughts on “N.E.D. versus Cancer-free”
Hi Dan, continue your verbal vomiting, if it helps, its all good.
I had lunch today with two buddies from my prostate forum, both about to start SRT and HT. I’m the baby of the group in that my PSA is just now creeping into the alert zone.
Sitting there doing lunch on the beach, I realized that like them, I’ve finally come to the realization that dealing with this garbage is just part of the human condition, once you hit a certain age. I don’t know how I went from being terrorized to being “accepting”. It just happened. Just sayin.
Thanks. I’ll do just that. What beach were you lunching at? East coast? West coast?
I agree about acceptance. While it may not seem like it from some of my posts, I truly believe that I’ve accepted the fact that this crap is coming back, and it is what it is. I’m just getting wrapped around the axle trying to figure out how and when to deal with the reality. Not an easy answer at the moment, but perhaps in time.
I didn’t spend any time in the forum this weekend, but will dip my toe in more deeply through the next week or so. Thanks again for the suggestion.
One – couldn’t agree more with your thoughts. When my friends ask about my latest PSA test results I never say cancer-free, all I say is that my PSA in undetectable and let them read into it what they are happy with. I had the open prostatectomy in June 2016 and go for my 22 month test in April. If it’s also undetectable my surgeon is handing me back to my GP for future tests.
Two – I saved your ‘salt flats and rocks’ photo as my desktop. Looks stunning. Thanks.
Three – I fly to LAX in May for an 8 week tour and back home in July. Doing Los Angeles, drive to Las Vegas, fly to Fairbanks, train to Anchorage, cruise to Vancouver, Greyhound to Seattle then drive to Cleveland. Love my transport types. Hitting Antique Stores for old playing cards.
Keep up the verbal output. It also makes it better for all your followers
Sending positive thoughts and hugs,
Ray in Australia
Thanks for your comments and glad you enjoyed my photo!
Your North America trip sounds pretty incredible. I’ve managed to drive through all 50 states and, when I got out of the Navy in 1993, I drove from Chicago to Alaska and back, taking a detour through Vancouver and Seattle on the return trip. The one “oddity” in your trip plan is Cleveland (Rock and Roll Hall of Fame??), but the drive from Seattle to Cleveland will give you a great perspective of the wide-open plains and heartland of the U.S. Feel free to use the “Contact” link above to email me directly if you want to pick my brain.
Dan (in San Diego—pop down for a pint one day!)
Been there, done that. Now on hormones for the duration, which is a whole other ball game. Hang in and soldier on!!
Thanks for your comment and perspective. I’ll keep marching forward. I’ll just need to pick a direction at some point.
This is a tough one for me. When I had my brachytherapy they gave me an 80% chance of having NED at five years. I considered forgoing further PSA tests on the assumption I’d be fine. The doc talked me out of that. Three years later, if memory serves, my PSA started steadily rising. I went in for a MRI and they found the three spots I mentioned earlier. That was about five years ago. I was put on androgen deprivation therapy and have been on it since then. In many ways it has wrecked my life. Depression, sexual problems, fatigue and so on. I often wonder if I made the right decision continuing to monitor my PSA. I’d probably be dead now, but I would have had many more years of significantly higher quality of life.
Again, Jim, thanks for being so open and for sharing. Your situation—and that of many others—is my biggest fear. Trying to find that balance between quality of life and quantity of life without knowing the real impact until, sadly, you’re months or years into the treatment. At that point, there’s not much you can do to reverse some of the side effects. In my mind, I’m inclined to delay treatment, especially ADT, until it’s absolutely necessary to manage pain near the end of the road. I dunno….
That’s what I would recommend. That said, I’m still on ADT so not following my own advice. I guess I’m so far into it I don’t know what else to do. Your PSA is so low you have a good chance of seeing new autoimmune treatments come available.
I think before the oncologists and urologists are allowed to prescribe ADT they should be required to go on it for four months. I have little doubt there would be a statistically significant difference in treatment recommendations
Sounds like a plan to me. 🙂
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I’m with you. My poem/monologue about my journey Prostate Cancer: Pulling the Finger Out, I have performed at half a dozen places and always receives massive applause and brilliant feedback. In fact at one gig a guy went out at the interval and bought a pack of chocolate finger biscuits to present to me and my table. Lol
Anyway, I end that poem with “I have no more cancer”. It’s a phrase that has always rankled with me, but I didn’t know how else to put it succinctly, and in any case, most people listening just want to know that ‘it can be beat’ and are delighted that it can,
One guy, who I happen to know has had a bowel cancer op came to me after a performance and high-fived me and I didn’t know how to respond to his gleeful exuberance.
But yes, I’m with you and, for myself, continually check my language for accidental over-positivity, just in case of that unwanted PSA result (tests are now every 3 months and go down to 6-monthly this year).
I feel for you in that quandary where you live. Just for additional info, my brother in Auusrralia also had the disease. He decided to take the opposite route. Loads of research in weird corners of the medical Internet. Changed his diet completely. Had the amalgam fillings removed from his teeth at great cost. All sorts of odd shit. He’s convinced that he’s managing it well and that anyone can do the same without medical experts cutting/burning/freezing. His PSA came down from 12 for a while. I haven’t contacted him lately to see how he is doing, mostly because he’s a bit of an arse, but that’s another story.
Thanks for your comment and your story. I checked out your poem—definitely appropriate and insightful. I’m glad to hear that I’m not the only one who’s concerned about being overly positive. I thought I may be on my own in those thoughts.
Congrats on moving to the 6 month test cycle. No need to go through PSAnxiety unnecessarily if things are looking good. Hoping you have lots of NEDs in your future!
I too have an issue with “cancer-free”. My wife had colon cancer and 5 years out when they started talking about her being “cancer-free”, the sh*t hit the fan, with a brain tumor (which isn’t supposed to be possible) and cancer in her bones. She was gone within a year, and the last few months were surely not pleasant. I cared for her and she died peacefully at home. My RARP was in July, and working through the side effects. My first PSA isn’t until September. Hoping for a good value, but certainly won’t be thinking I’m free from the disease. Thanks Dan for this blog. It has been very helpful as I’ve made my way on this journey.
Hi Stew. I’m sorry that you lost your wife to cancer, and that cancer has now crept into your life, too. To say neither are easy would be an understatement. Let’s hope that your PSA in September is undetectable and remains that way for a long, long time.
I, too, am scheduled for my first post-radiation PSA test in September, but I’m not sure it will do much more than establish a baseline for me. But given that we’re affecting two variables simultaneously—salvage radiation and androgen deprivation therapy—it will be difficult to determine what contributed the most to what I hope will be a PSA reduction. The ADT dose was good for six months, so that won’t wear off until the end of October, so I suspect that we won’t know if the radiation was effective until winter or spring. Time will tell.
Thanks for your kind words about the blog, and I’m wishing you all the best as you go forward.