When I was in 7th grade, I had to give a presentation on my science project, an erupting volcano, and I was so anxious about the presentation that I became physically ill and erupted myself. Not pretty. While I didn’t get physically ill today, the feeling was almost the same as I waited to see the radiation oncologist. It’s silly, I know. But it was very real.
In a nutshell, his recommendation was to start salvage radiation therapy.
The R.O. is a Navy captain medical officer, and we spent nearly forty-five minutes going over my case (which I truly appreciated). He took control of the conversation from the outset, explaining the options and consequences of each. I could tell that he had given this little presentation once or twice before. Once we got through that, we did have a real conversation. Some key points:
- He disagreed with the notion that the increasing PSA is from residual benign prostate tissue left behind.
- He was confident that the cancer would be in the prostate bed based on my numbers and statistics.
- He talked about the differing definitions of biochemical recurrence, saying that the American Urological Association (AUA) and American Society for Radiation Oncology (ASTRO) use the 0.2 ng/ml threshold, but the National Comprehensive Cancer Network (NCCN) defines recurrence as a detectable PSA with two consecutive increases. My case meets the NCCN definition.
- Continued surveillance is a viable option for me given my numbers and PSA doubling time.
- We talked about the short and long-term side effects of radiation therapy: urinary control, sexual function and bowel control. His estimate the probability of long-term quality of life-impacting side effects in any of the three areas to be in the “single digits.”
- He reminded me of selection bias when talking to other patients or bloggers about their side effect experiences. Yes, their experiences are very real, but for each person in an online forum, there are many others outside the forum who are leading productive, acceptable lives.
- If we were to do salvage radiation therapy now with my PSA under 0.2 ng/ml, he put the probability of me having no evidence of disease five years from now at seventy-five percent. If we wait until my PSA is above 0.2 ng/ml, that number decreases.
- Newer scanning technologies weren’t likely to pick up anything at my current PSA levels, yet he was open to the idea of them if it gave me peace of mind.
- With my numbers, there is no reason to radiate the pelvic lymph nodes or use androgen deprivation therapy (ADT).
- He was open to waiting until the August PSA results to see what they revealed before making a decision.
It was a good conversation, but I’m sorry to say that I don’t know that there was a lot of new information for me there that would tip the scale either way. The doctor wasn’t pushy in one direction or the other, saying that it was equally reasonable for me to continue surveillance or for me to begin salvage radiation therapy. The choice is mine. About the only thing he was adamant about was not starting ADT, and I’m in perfect agreement with him on that.
I did learn one really interesting thing, however. The reason that the VA Medical Center referred me to Naval Medical Center San Diego has to do with geology. Apparently VA Medical Center San Diego (La Jolla) was built sufficiently close to a geological fault line that they couldn’t build a radiation “bunker” that would be safe in the event of an earthquake.
What’s next for me? A ton of thinking, reflecting, and reevaluating.
Enough for now. I’m spent.
Dan's Journey through Prostate Cancer 
Well Dan, I guess you are at a point where, as we used to say in Brooklyn, sh** gets real. Hard Decisions.
And in fact, while I’m only at .06, I’ve got an appointment with an RO tomorrow morning, at Cleveland Clinic in Florida (I’ve got a vacation home here). And June 18th, I’ve got a second appointment with an RO at MSKCC.
While my surgeon says to wait till .2 before even doing scans, I’m inclined to not wait too much longer, maybe another 2 PSA rises.
I’m sure you are thinking, like I am, you don’t want to let that window of cureability closed, but you also don’t want treatment unless absolutely necessary.
Good luck in your thought process.let me know if you care to compare notes as I too go thru the process, with pretty much the same pathology as you.
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Thanks, Ken. Yep. We’re sharing the same thought process. It would be interesting to hear what your RO says just for grins and giggles.
And, yes, walking through that door this afternoon made things (a.k.a., sh**) quite real.
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It’s a tough choice, but there are worse things than a bit of radiation. An earthquake while you’re on the radiation machine would be bad. Hang in there, you’ll make a good choice.
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Thanks, Andrew. Your sense of humor is a delight (and much needed!).
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Dan,
I want to thank you for sharing your experience. I was diagnosed with prostate cancer and had my prostate removed January of this year. A subsequent evaluation noted that cancer was confined to my prostate and cancer was undetectable.
When I was told that I had cancer it hit me hard. Reading your story during this time encouraged me and I continue to follow your journey with others.
With great admiration and gratitude.
Art
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Thank you, Art, for your kind words.
I’m sorry that you needed to read my blog in the first place, and it sounds as though your surgery went well given the pathology and early PSA results. That’s always a relief!
I hope that the rest of your recovery is progressing well and that you’re on your way to years of undetectable PSA results.
Wishing you all the best,
Dan
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It’s a tough one for sure. It does seem the opinion of the RO is the same both sides of The Atlantic. I began my Radiotherapy on Tuesday this week with my psa at 0.1 so far so good, just a new routine to settle into. The radiologists are great and the department runs like clockwork, some truly dedicated people. Good luck Dan, thanks again for sharing it means a lot to all of us followers.
Adrian
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Hi Adrian,
It’s reassuring to hear that there’s consistency in treatment recommendations. It builds a little more confidence in your decision making.
I’ll be following your treatment with interest and I hope that it yields the result that you want without any meaningful long-term side effects.
All the best,
Dan
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I’ll keep you posted Dan. One week in and I feel fine, but I’m sure by week seven that could be different. Gave up so much with the RP that I’m kind of resigned to some of the long term side effects. Having weekends off is nice, so we went camping last night followed by 10 miles on the kayak today and a nice bottle of wine with dinner, back on the straight and narrow tomorrow ready for the next zap-fest…
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Hi Dan, tough decisions ahead, but you will do what is right for you. I had salvage radiation therapy twelve months after surgery following rising PSA. It finished off what the surgery did not in respect of depression, fatigue and ED. Not easy to come to grips with, but life does go on and it can be great. Thinking of you at this time.
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Hi Phil,
Thanks for your insights. Those are all concerns of mine, too, so it’s a little disheartening to know that they’re on the horizon if I go down this path.
All the best to you, too. I’ve been following your latest adventures as well.
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Thanks Dan, I think the information your Doc gave you is very sound. And I read it with interest because I am only a few years behind you. I wish you well.
jl
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Thanks. I agree. I was pleased with the way he handled the entire meeting and his willingness to discuss things in detail.
Hopefully, you don’t follow in my exact footsteps! No recurrence.
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Sounds as if you have a very good RO. I hope you can request to see him again when you go back.
I’m surprised to read that the five year no recurrence is only 75%. That’s pretty good, but I still thought it would be higher. I’ve read and experienced that radiation in general causes fatigue and depression, but that both tend to resolve sometime after the procedure.
Hopefully, your next PSA result will help you make a decision.
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Thanks, Jim. That 75% number is actually better than some of the numbers that I came across in my research, so it was a bit of a pleasant surprise for me. And, yes, I specifically asked if he would be the one overseeing my care throughout, and he would be–at least through the zapping process. Afterwards, I’d return to the VA for follow-up care. That was reassuring.
Hell, just thinking about this dilemma causes fatigue and depression! 😦 At least for me.
We did discuss waiting for the next PSA result. Both of us agreed it was likely to go up, and my sense was that he thought it was a moot point to wait. Now that I’ve had 24 hours to mull this over, I may tend to agree with him. Another increasing value only reinforces his position.
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Hi Dan,
Well as you mentioned you were interested in the result of my meeting with the RO, here’s the short version
All recent data point to earlier SRT being better than waiting
High degree of confidence that the PSA was coming from the prostate bed (I had positive margins intra-operatively, negative after further resection, he thinks cells were left behind that couldn’t be seen)
Based on my Gleason score, he would NOT recommend Hormone therapy along with the SRT
With today’s technology, chances of long term permanent side effects 5% or less. SE’s should dissipate 3-4vweeks after treatment ends.
I asked what he things might happen if I did nothing, ever. He said 50% chance that 10 years out I’d be living happily with no problems related to PC. And 50% chance I’d end up with serious problems, (I’m not willing to take those odds)
He didn’t think it would increase my risk to wait for another couple if psa’s, say through September (but as he stated, no guarantees.)
So very similar to what your RO said.
Good luck, traveling this crappy road, I’ll look forward as always, to your next blogpost.
Ken
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Thanks for sharing, Ken. When you see consistency in answers from different R.O.s, that’s a bit reassuring.
I did send a few follow-up questions about long-term side effects to the RO today, and he responded but I really didn’t have time to digest what he sent while at work today. That will be a project for the weekend.
Thanks again for sharing.
Dan
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Dan, as an add on to my previous comments, I’m going back to NY next month and am meeting with Michael Zelefsky at Memorial Sloan Kettering on June 18th. He’s. Vice Chair of Radiation Oncology, with a focus on PC. He’s probably the one that I will have treat me assuming I decide to treat. So I’ll let you know the result of that meeting, it will probably add to the consistency of opinions for you (and me, amazing how similar our paths are).
Ken
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It sounds like your RO knows his stuff. Sometimes we just have to trust them and hope for the best. I had radiation to my pelvis and it destroyed some good bone. Maybe best to hit it while it is tiny, rather than wait too long. Not an easy decision. Best of luck Dan.
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Thanks. I was impressed by this guy, and it has caused me to re-examine my thought process on this whole affair. He’s already answered via email some follow-up questions that I had after our consult, and those have been helpful, too.
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