One of my regular readers of this blog and I have amazingly similar stories when it comes to our diagnosis and treatment. We were both diagnosed around the same age, our PSA levels were quite close to each other, and we both opted for surgery. Both of us had undetectable PSAs well after the surgery—until we didn’t. His PSA became detectable around the three year point, and mine became detectable at a few months shy of five years.
He opted to begin salvage radiation therapy (SRT) along with androgen deprivation therapy (ADT) when his PSA hit 0.08 ng/ml. And, if you’ve been following my blog for any amount of time, you already know that I’ve been punting that decision after nearly every PSA test, with my PSA bouncing around in the 0.14-0.16 ng/ml range without seeking SRT or ADT yet.
Who made the right decision?
Both of us.
When cancer is initially introduced into your vocabulary—and even long after—you’ll be faced with a myriad of decisions to make. Is treatment warranted, or can I go on active surveillance? If treatment is needed, do I opt for surgery, radiation, or one of the newer methods available? Which doctor has the most experience? Which hospital has the right equipment? The list goes on and on.
Many of those same questions are applicable in the case of recurrence, too.
When it comes time to make some of those decisions, remember first and foremost that it’s your body, your family, and your circumstances. You—and not anyone else—have the final say.
Do your research using reliable, trusted sources and don’t be afraid to ask the doctor questions or call them out on something you’re not comfortable with. Seek multiple opinions from the doctors that could provide the different treatment options to you (keeping in mind, of course, that some may push their own specialty over others).
Talk to other patients or read their silly blogs to see what their experience has been, knowing that each individual cancer case is unique and will not apply directly to your own situation.
Don’t let the words “prostate cancer” scare you into acting immediately. Unless your Gleason score is an 8 or 9, you do have a bit of time to do this research and consulting with different specialists. I made my decision to have surgery rather quickly and never consulted with a radiation oncologist to see if that would be a viable first treatment option for me. Do I regret that? No. But, with a Gleason 6, I should have slowed things down and have had the meeting anyway.
One of the options that is often overlooked is to do nothing. Okay, it’s not exactly doing nothing—you’ll definitely want to be on active surveillance—but you don’t have to leap right into a treatment option if your cancer is low grade / not aggressive. My sense is that more and more doctors are beginning to embrace that approach to avoid over-treatment.
That brings me to my final point. Once you make a decision, don’t look back. Embrace it and move forward. If you’ve done your homework correctly, you’ll know in advance what the consequences of that decision may be, and you’ll be more accepting of them if and when they do come.
If my PSA continues to slowly increase and, at some point my body scan lights up like a Christmas tree because I haven’t started SRT, I’ll probably curse like the sailor I once was and say, “I knew this was a possibility. What’s next?” But I’ll also know that I will have had six or seven or more years of high quality of life without any short or long-term side effects from SRT and/or ADT, and that is of great importance to me. As much science as there is in the treatment of prostate cancer, in the end, it’s an educated crap shoot.
Who made the correct decision?
Both of us. One of us. Neither of us.
Time will tell.
Stay Well! Wear A Mask! Wash Your Hands! Stay Home!
Dan's Journey through Prostate Cancer 
Well said, Dan!
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Thanks, Phil! I hope you’re doing well.
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Love this: ‘Once you make a decision, don’t look back. Embrace it and move forward. If you’ve done your homework correctly, you’ll know in advance what the consequences of that decision may be, and you’ll be more accepting of them if and when they do come.’ No point in endless regrets and what might have been. Stay well Dan.
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Thanks, Jim! I hope that you’re doing well through this pandemic.
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An excellent post Dan. I agree, you have to decide for yourself with all the info available. Having opted for radiotherapy and now into my second year of hormone therapy, my prostate cancer seems to be the least of my problems.
I know in the future I will be faced with difficult decisions but for now I just want the best life I can get.
Stay safe.
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Thanks, Pete. I wish you well as you face what’s ahead.
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Just a wild guess, LOL, I think I’m the regular reader you refer to Dan.
You said it well. Prostate Cancer is unique among cancer for among other attributes, having many choices of treatment protocol at all stages, rather than one “Standard of Care”
It’s so important to make decisions based on our own research. If we proceed in that way, then there is never a cause for treatment regret. We both did a ton of due diligence, and advocated for ourselves. And so we both made the right decision.
Best wishes for many years of PSA free life.
Ken
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Dan, I smiled when I saw this, and you know why 😉
I have to admit, I sometimes wonder if I made the right decision to commence SRT and ADT at a PSA of .08. Partly because my urologist advised against it (against the advice of 2 high level radiation oncologists), and partly because of your experience to date. Although my PSA velocity at the time of my decision was considerably faster than yours.
Nevertheless, I don’t beat myself up over it, I’ve had no discernible side effects And I’m 2 years post SRT, with PSA again undetectable.
This post by you was very well written and is a good read for anyone diagnosed with cancer, especially Prostate Cancer.
Wishing you a lifetime of continued stable PSA’s
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Thanks, Ken. I suspected you might like it. 🙂 It’s great that you don’t have any side effects from the SRT and that your PSA remains undetectable. Keep it up and stay well!
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I check in here once-in-a-while, and was glad to see your post now. My uPSAs have been accelerating lately, and I am concerned. Earlier, I’d click up a hundredth’s in 18 months, then again (a couple of six-month tests) in one year. Last November 2019 = 0.06, and then this past May = 0.07; only six months. Based on three published papers during 2016 (regarding the predictive value of uPSA to anticipate biochemical recurrence), I was ready for SRT at 0.04. My Rad. Oncologist says it’s very likely that some prostatic tissue remained post-prostatectomy, and he was not anxious to initiate therapy then, or (he suggested) at 0.06, suggesting that serious consideration would be given at 0.08 I saw him at 0.06; emailed him six months later at 0.07, and he reiterated the plan to consider SRT at 0.08. There are side effects to consider; not everyone is lucky.
So, why did you initiate SRT at 0.08 — why not 0.06 or 0.10…? I haven’t thought about this stuff since my last test in May, but now it’s really on my mind. It seems as though a doctor’s and a patient’s treatment plans/decisions are equally valid. It’s still all a crap shoot.
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Hi Orv,
You’re right, it’s a crapshoot, particularly because at these low levels, you can’t see anything on a scan.
At .06, I was told by an RO at Cleveland Clinic in Florida, that I should treat, citing studies that earlier is better.i live in NY but spend winters in Florida, and didn’t want to treat down there. I also just didn’t feel ready, hoping things would level off. So, I waited until I got back to NY 3 months later and met with the RO at MSKCC whom I had already established a relationship with, and that’s when my PSA hit .08. At that point the NY Dr also recommended treatment, along with ADT. It was clear to me that the trend was well established and I was getting closer to .1, that’s when I decided no use in waiting any longer .
I wish you luck in your decision. Whatever decision you make will be the right one for you,
Ken
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My PSA was 5.7 when I was notified by my VA provider. I was in Florida at the time so I went to the Tampa VA for an appointment. I had the biopsy done and the results were 3+4 Gleason 7. I chose active surveillance and then needed a MRI to check the top portion of the prostate to verify nothing was there. Four spots were discovered that looked suspicious so a MRI biopsy was done. Four tumors were discovered with a Gleason score of 4+3 Gleason 7. My choices then went to removal or radiation. I was consulted for both options and I chose removal because of the recommendations of 3 years of hormone treatment. I definitely made the right decision and it has been 2 years in Feb 2020 since my surgery and PSA scores below .01.
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Hi VIck, Thanks for sharing your story and I’m glad to hear that your PSA is below 0.01. Let’s hope it stays that way for a long, long time. All the best to you.
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Brilliant.
I only follow you, Dan, because you liked a poem I wrote about my initial experience, diagnosis to prostatectomy. I was 66, now I’m 71, and surviving very well so far.🤞
My approach has been slightly different and has changed somewhat. With a Gleason 9, I had the op and declined the follow-up theraps. Took a while (Roughly 3 years) to recover to 99% urinary continence. Just occasional, annoying, slight leakage on waking and after physical stress.
Then some bad things started happening with the next generation. My daughter’s husband developed leukaemia and after a year of hell in treatment, succumbed to it when it returned last August. And In December 2018 At the age of 41, my stepdaughter was diagnosed with a brain tumour which lost her the use of her right hand+arm and affects her right leg. They managed to get most of the tumour out and the rest of her treatment with steroids and plenty of other pills has decimated her way of life. She was Head of Early Years at her school and now she is disabled. She and her three children have needed me or my better half to get there early morning when her husband leaves for work, feed and do school runs, etc..
So I stopped going to regular consultations and missed a few PSA tests.
The pandemic cut into that routine, which has been a relief for us two, although we’ve obviously missed the grandchildren. But now we’re back to that regime.
One bright glimpse for us is that over 6 months ago someone procured some cannabis oil for her and the last two MRI’s have shown a shrinking of the remaining tumour. It’s illegal so I don’t ask questions, and seems to be beneficial.
I don’t worry about things, anything. I just get doing what’s needed. And I still write my poetry and will get back to organising regular performance poetry nights when we can reopen the theatre space!
As the England has the worst coronavirus response in the world, we’ve been extreme in our fastidiousness to shield ourselves and loved ones.
Apologies for the long ‘comment’. 🤭
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Good readinng this post
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Just realized that I responded to a thread that I already responded to. 3 years ago. Oh well….duhhh
Ken
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