Well, I didn’t expect that…
I met with the urologist this afternoon—a new one to my case—and he was personable but very direct.
We talked about the goofy PSA reading and he wasn’t all that concerned about it. It appeared to be lab error and dismissed it as pretty much meaningless. But what followed caught me a little off-guard. “The one thing you absolutely do not want to do is start treatment.” He was quite emphatic. His reasoning was several-fold.
First, he talked about over-treatment given my numbers and pathology. He was looking at how long it took for the PSA to return post-surgery (nearly five years) and how slowly it’s been increasing (PSA doubling time / velocity). Those were positive indicators to him. Treatments like radiation and hormone therapy have side effects that impact quality of life and can be avoided with minimal risk for now.
Second, he expressed concern that if we started treatment too soon, specifically hormone therapy, it would be less effective when we may need it the most.
Third, he mentioned the absolute value of my PSA and how imaging wouldn’t be able to detect where any cancer may be at that level. That’s nothing new to me. We talked about the Ga-68 PSMA trial up at UCLA, and he confirmed that at my PSA level, the chances of finding something meaningful were small (<30%).
Finally, he was very much aware that continued monitoring is needed to make sure that this doesn’t get away from us, and he was content with PSA tests every six months considering how slowly the PSA was increasing. I wasn’t quite comfortable with that, so my next PSA test will be in late June with an appointment on 2 July 2020.
I did mention to him the issues I’ve been having with my back and sciatica, and that I had an MRI last night to have that checked out. I’m 99.5% certain that the problem is related to a back injury that happened in 1986, but that other 0.5% of me was wondering if there was metastasis to the spine. He pretty much dismissed that possibility out of hand given where my PSA level is at. (Hey, my mind wanders into some pretty dark corners sometimes, but given that one of the first place prostate cancer likes to metastasize is the spine, it’s not too far-fetched an idea.)
Again, I was a little taken aback by how emphatic he was concerning not pursuing any treatment at this moment. I got the sense that he really values trying to balance avoiding over-treatment versus quality of life versus knowing when to step in and act. For now, I’m comfortable with continued monitoring with another PSA test in four months.
So, I’ll leave you with a little urology “humor” that has men cringing everywhere.
As I was sitting in the exam room waiting for the doctor, I looked over on the desk and saw the tools of the trade—some lubricating jelly and toilet tissue—at the ready for the dreaded DRE. (The rubber gloves were in dispensers hanging on the wall.)
Then I reminded myself that it was a DRE during a routine physical that discovered the mass on my prostate and started this adventure. Thirty seconds of discomfort can save a life.
Dan's Journey through Prostate Cancer 
I think that you have received very sound advice. It is so hard to decide. Go early and regret it later. Or leave it and maybe regret it. At least you can monitor progress and change plans if need be. Good luck! Cheers, Phil
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Thanks Dan, for the continuing PSA saga. This blog is a boon! You’re open and forthright about everything, which helps us all in varied ways.
I too have the occasional sciatic pain, which is debilitating but always temporary.
I had it at age 13 while ballet training (Royal Ballet School, UK) and it was continual and put paid to that career. For 3 or 4 years I was on analgesics until a wise and sensitive colleague at work advised me to try not taking tablets and see if I could cope with the pain mentally. I did. Gradually, it worked.
So I’m a great supporter of what I guess people now would call ‘mindfulness’, doing without unnecessary treatment. Depends what you deem ‘unnecessary’, and your new urologist (from where I stand) is spot on.
Best of wishes,
Al
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Thanks for your kind words, Al. I have to admire that you attempted ballet in your youth. I have the rhythmical abilities of a boulder. Dancing–of any kind– is not in the cards for me.
Like you, I’m scalpel-averse, so I’ll do what I can to avoid it if I can find some relief.
Best,
Dan
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Hi Phil,
Thanks. I think that’s one of the things that I have to keep reconciling with myself. One of the counter-intuitive things about prostate cancer is that there are some types that don’t require action, and that just doesn’t seem logical. When someone hears “cancer,” we all conclude that immediate action is required. I have to constantly remind myself that, with prostate cancer, that may not always be the case.
As you said, the possibility of regret exists no matter which way I decide to go, so I’m more inclined to keep nasty side effects of treatment at bay for now. I’ve had 4.5 years of good quality of life while watching my PSA slowly creep upward, and that’s been important to me. Time will tell how this crap shoot plays out. 🙂
All the best,
Dan
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Dan, I don’t think it’s crazy at all to have asked for the MRI. My back has been bugging me lately and though it’s obvious to me that the pain is from too much snow shoveling, I can’t help but wonder…So from one anxious PC survivor to another, I hear you!
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Thanks, Jim. I just got the MRI results back this morning, and from my lay person interpretation, it’s definitely my old injury that’s causing the issue. Now we just need to see what can be done about it.
Dan
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Keep taking care of you. Keep us posted on your back. My sciatica gives me fits too. As long as I behave, I do pretty well, but let me bend and twist or lift wrong, I am back to frozen peas down the back of my pants to reduce the swelling to deal with the leg issues and back pain. Forever my challenge. Mine goes back to 1978-79. Take care, Tammy
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Thanks, Tammy. Sorry to hear that you’re similarly afflicted. It sucks, doesn’t it?
The MRI indicates its related to my old injury, so now we just have to figure out what’s next.
Dan
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Hi Dan, my advice to you is to listen to your new oncologist. To be blunt with you, and I hope you will not be offended, i feel you tend to focus too much on PSA rise. You are in good health, active and contributing to society and I highly suspect something else will get you before prostate cancer. My psa has been doubling every 5 weeks every time I have experienced treatment failure and I have now failed every treatment available to me. S and I returned to Australia in November. I am now solely on pain control. I can no longer walk without support. My psa in January was 1700. My oncologist suggested there is no point monitoring it any more. I sleep a lot. My meds cause me to sweat a lot but they do control the pain. I do enjoy reading your posts and you are a mine of information. I wish you a long and happy life. Even with a doubling time of 5 weeks, I have survived more than 11 years.
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Hi Les,
Thanks for your comment and no offense was taken by your sage advice. I am learning (slowly) to better understand what PSA means in my specific case, and you’re right. It will likely something else that does me in.
Thanks for the update on yourself. I’m glad they’ve found something to control your pain and hopefully it makes you comfortable.
Wishing you and S. all the best. —Dan
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