I met with the urologist this afternoon to go over my 1 August 2018 PSA test results and it was an interesting conversation.
This was a new guy wearing his spiffy white lab coat with the University of California-San Diego (UCSD) emblem embroidered on the pocket. (I pretty much see a different doctor each time I go to the VA hospital and, yes, UCSD doctors care for patients at the VA hospital, too.) I had my PSA trend chart printed and sitting on his desk when he walked in, which he appreciated seeing the whole history on one page.
I let him start the conversation and it was pretty clear right from the start that he was of the “continue to monitor; no need to act right away” mindset. He really focused on my PSA doubling time being so long as being the reason for his recommendation to just watch this for now.
I shared my conversation with the radiation oncologist with him and he really didn’t comment one way or the other about the R.O.’s initial recommendation to zap.
I did take advantage of the opportunity to discuss the urological side effects of being zapped in salvage radiation therapy. One of the things that I focused on was urinary strictures.
He explained that just by having a prostatectomy and stretching the bladder neck to reconnect with the urethra, you’re in essence creating a stricture to begin with. “That’s a good thing,” he said, “because it helps control the urine flow in the absence of the prostate.” But zapping the area will change the nature of the surrounding tissue and can cause it to close down further. If that’s the case, they may have to do a procedure to re-open things and that’s where you can get into the higher leakage scenarios.
One of the things that really resonated with me during that discussion about side effects was when he said that I shouldn’t even be worried about them because I could go months or years without even having to think about salvage radiation therapy. (And, no, I didn’t prompt him to say that!)
That led to a discussion about the newer imaging technologies and he reinforced what I already knew—that most are unreliable with PSAs less than 0.2 ng/ml. I told him that the spreadsheet that generated my chart shows that I won’t hit 0.2 until late 2020 or early 2021 if it continues at its current pace. Perhaps in that time, the new imaging technologies will be better and more reliable at lower PSA levels. (He was also empathetic to the idea of not zapping unless you knew where the cancer was.)
We also talked about the frequency of my PSA tests and his immediate response was that we could do this every six months, again, based on my PSA doubling time. That surprised me. We’ve been on a four-month cycle for three years now. He said it would be my call, so I opted to stick to the four-month cycle for at least one more cycle.
Wrapping up the conversation, I did ask, “If I do have to get zapped at some point, where would you do it? UCSD or Naval Medical Center?” He deflected my question and never responded, so I asked again. Again, he remained silent but his hint of a grin perhaps answered it for me.
All in all, I was pleased with the consult and am content to continue to monitor, with my next PSA test being in early December.
Yes, I know that more studies are showing that zapping recurrent prostate cancer early leads to better outcomes in the long run. But other studies (Pound, Freedland) show that someone with my pathology can delay or even forego additional treatment and its associated side effects impacting quality of life and stick around for an additional 8-15 years. So, yes, this is a bit like playing a game of chicken or Russian roulette, and that thought never leaves my mind.
So why not get zapped and be done with it? Because quality of life is very important to me and if I can maintain it for a few years more than I want to try and do that. Is there risk of the cancer getting away from me? Of course. But with continued monitoring and perhaps advances in imaging technology, we can stay one or two steps ahead of it.
Time will tell.
Dan's Journey through Prostate Cancer 
Dan, good for you, it sounds like you can put this out of your mind until December. And it’s uncanny how our experiences are so similar. My Urologist/Surgeon also told me I could wait. Until a visit 3 weeks ago when he told me to treat. I saw him again last week and I asked him why he changed his mind. He said that he treats the person, not the disease and he knows me well enough to know that I will be constantly stressed if I wait, and that’s not good for cancer. But that if I did wait it would be years before I really needed to do something.
Like you, two RO’S and an MO I met with recommend treatment. My PSA is .078, (3 weeks earlier it was .082, the same to me) and 6 weeks before that it was .068. Overall my doubling time, is slow though, at about 10-11 months. But not as slow as yours.
So tomorrow, I het my first of 6 monthly hormone shots and in 8 weeks I get zapped. My RO, at Memorial Sloan Kettering, told me long term side effects are rare now, maybe 1%. I believe him, because I want to. I just don’t want to take the risk. Wish I had the guts you have, to be honest.
I hope you never need to act. I’ll be following your story closely, keeping my fingers crossed.
Good luck.
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Hi Ken,
Thanks for your comment and update. Good luck on your treatment; I’ll be following along with keen interest as well.
Obviously, selecting a treatment path is a highly personal decision based on our own unique set of circumstances and beliefs. I’m happy that your doctor recognized that it’s more important to treat the person, not the disease. In some ways, I believe that my R.O. was doing the same in my recent email conversation with him.
Good luck to you, too!
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Hi Dan. There is no right answer and there is no single authority, so make sure you get answers to your questions, and make your call. You will make the right decision for you and no one else can. I had surgery which failed, then salvage radiation that failed. I then tried to live my life outside a cancer bubble and nearly ended up paraplegic and dead shortly thereafter. More radiation therapy helped. I have outlived three life expectancy estimates, so I no longer ask. Now doing chemo to again kick the sucker before he gets up. And there are still many more options on the table now and many more in the pipeline. I sacked my medical team that was waiting for my demise and engaged another team that is encouraging me to live. I am still terminal. But I am living, mostly a “normal” life whatever that is. I have confounded the medicos and hope to continue doing so. When this first happened, my brother said see you in ten years. It is two years away and I expect to go further. Live positive. Make changes if you have to. I am not sure what my message is and I so want to say something to help. I try to avoid giving advice. The bottom line is that the medicos do not know everything. If they did I would be dead three years ago. Go well and enjoy life. Cheers, Phil
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Hi Phil,
Thanks—your message came across loud and clear to me. And, of course, congrats on making the changes that you felt you needed and on defying the odds. I hope you and your brother get to share many of your favorite beverages together for years to come!
Best,
Dan
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Great result Dan.
We all want certainty but prostate cancer is not a single, uniform disease and even two patients with what appears to be in very similar situations can have very different outcomes.On a YouTube video I recently watched a consultant said “Prostate cancer isn’t a singled disease, even in a single patient. It is really a family of diseases”
Another said that all treatments have side effects and which treatment or even a no treatment option is a question of risk and benefit and it’s going to be a different balancing equation that is different for every patient.
So accept your uniqueness and continue to make well informed decisions based on your unique situation and your extensive research.
Best regards
Charles
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Hi Charles,
Thanks. After almost 8 years of dealing with this crap, I couldn’t agree more. Each and every case is unique and each and every patient approaches it with their own set of priorities and values. The fact that the medical community has such diverging opinions on courses of action just reinforces that you have to be comfortable selecting your own path, adjusting as time and circumstances warrant.
Best,
Dan
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Thankful for your positive dr. Visit! So agree with you on the “ feeling like Russian roulette “. Battling for quality of life is sometimes hard with the docs. Those battles leave tired and frustrated. I do the verbal/research battles, hubby does the physical ones. Each day is a new day….We can be thankful , in that.
*************************** Sent from my iPad
*************************** Cheri
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Hi Cheri,
Thanks for your comment. I was pleased with the discussion. Historically, I go into the appointment well prepared and I just start spewing my thoughts and questions before the doctor can barely say, “Hi.” This time, I held back so as not to taint the doctor’s opinion, and could tell right away that he was in the same mindset as I was. To be honest, I think he was a little taken aback by the fact that I was perfectly okay following that course of action for now. I suspect most patients want the doc to do something—anything—NOW!
Wishing both of you all the best.
Dan
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I agree wholeheartedly with your decision. I also agree with your oncologist’s reasoning. It just makes sense. Time to enjoy life.
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Thanks, Jim. I’m at peace with it for now. Move forward and take things one PSA result at a time. In the meantime, enjoy life.
I hope you’re doing well.
Dan
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Hi Dan,
I found this site and really like it… in fact, I switched to this WP theme or darn close to it!
I too am kind of in your shoes. At 53 I had a found out by a miracle having to have my left hip replaced I needed a physical. So, my general doctor ordered the bloodtests and added a PSA. It came back at a 5 and I went to the Urologist and had to get a biopsy after spending 1400.00 of my own funds on a 3T Multiparaemetric Pelvic MRI only to have it show nothing. But.. I had 3 of my 12 samples showing 4+5=9. So, I had to rush down to Virginia Mason and get all the tests done to make sure it hadn’t spread. I ended up having Dr. James Porter at Swedish do the RP with 12 Lymph Nodes on each side and sparing my left nerves. Pathology said negative on everything, negative margins, no lymphnode invasion or seminal either. I freaked out two weeks ago at my last PSA said 0.014 and my head started spinning that something was up and that I needed Radiation treatment. However, after searching out several prominent Urologist and they have come back to say HANG ON… Nothing till 0.03 or 0.04. So, I do have an appointment with DR. Eulau at Swedish on 8/29. But, I imagine he will tell me what my Urologist says, just keep up with 3 months schedule.
My PSA history:
ID Date PSA Score Location of Test Comments
1 10/12/2016 <0.015 Dr. Porters Office Lab Corp
5 2/15/2017 <0.015 Dr. Porters Office Lab Corp
2 2/2/2018 0.009 Dr. Porters Office Lab Corp
3 4/16/2018 0.008 Dr. Porters Office Lab Corp
4 8/9/2018 0.014 Dr. Porters Office Lab Corp
Best Regards,
BrianTinsley.com my prostate story
aorticdissection.com celebrating my 15 year anniversary today! Since my aorta dissected!
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Hi Brian,
Thanks for sharing your story. I skimmed your blog last night; I’ll have to dig into it in more depth later. (Yes, we’re using the same WordPress theme. Just an unsolicited suggestion: I didn’t come across any way to comment on your posts or to contact you via your blog.)
Sticking with the same lab for your PSA readings is a good thing. It reduces another variable that can explain fluctuations in your readings.
I’m a data-driven guy, but I have to admit that I’m a bit leery of PSA results in the thousandths of a nanogram per milliliter. Just think about how minuscule that is! I just have to wonder if even it being a full moon could explain the difference between your 0.009 and your 0.008. 🙂
I know I freaked when my PSA went from 0.04 to 0.08 in four months, and then I realized that I had an orgasm about 10 hours before my blood draw. My urologist said that, even without a prostate, having an orgasm could influence the PSA results the same as it does when you do have a prostate. I’ve heard others dispute that but. The urologist said that I should refrain from an orgasm 3 days in advance of the blood draw and, ever since, I’ve actually held back a week in advance just to be safe. One more variable eliminated.
With a Gleason 9, much more scrutiny and a stronger sense of urgency are certainly warranted in your situation than compared to mine.
I hope your next PSA test gives you a little more information on which you can make an informed decision that’s right for you.
All the best,
Dan
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Thanks do you know how to fix the comment thing? I cam put a contact link on my menu too. I see the comments when you click a recent post but not on the main screen.
Talk to you soon
Brian
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