I’m one of those people who always thinks of a snappy comeback—three days after the conversation.
Over the weekend, I reflected on my conversation with the doctor last Thursday, and one of the things that I failed to ask was what probability he would assign to the notion that my increasing PSA is attributable to benign residual prostate tissue instead of returning cancer. I sent an email that asked specifically:
I fully understand that none of us have a crystal ball, but the one thing that I failed to ask Dr. is what he thought the probability of this being benign residual tissue was. Is it 5%? 25%? 50%? His experience gave him the insights to make the comment, so his experience may also be able to measure the likelihood as well.
To which he replied:
I’m afraid I am not able to assign a percentage likelihood to the chance that any residual tissue is benign. I can only really extrapolate from the rate of change in the PSA. The longer it took to be detectable and the slower it rises, the more it seems likely to be a bit of benign tissue. Either way, it is those lab values and their pattern that will help to guide treatment. If it rises quickly then will treat, since a) that pattern is more likely cancer, and b) if it’s not cancer it is acting like cancer and the stakes are too high to disregard even with a high % prediction at this point that the tissue is benign.
Hope that helps!
His comment, “…b) if it’s not cancer it is acting like cancer and the stakes are too high to disregard even with a high % prediction at this point that the tissue is benign,” seems to be all over the place and contradicts his opening statement of not being “able to assign a percentage likelihood.” Hmmm…
So that was an interesting little exercise. I really didn’t expect him to come back with a specific number, but I thought I’d ask anyway. I don’t know that his answer convincingly persuades me one way or the other, but it does allow me to throw a tad more weight behind his theory that this is benign. A tad.
Bottom line: The only thing we know with any certainty is that my PSA continues to climb. Beyond that, it’s all a freaking guessing game.
On a related note, I’ve yet to hear from the radiation oncology department with an appointment for me. If I don’t hear from them tomorrow or Thursday (a crazy day at work for me), I’ll try to call on Friday to get on the calendar.
About an hour after posting this, I came across this little gem of an article from 2005:
The presence of benign prostatic glandular tissue at surgical margins does not predict PSA recurrence
We conclude that the presence of benign prostatic tissue at the surgical margins is not associated with adverse prognostic features and does not have prognostic relevance; therefore, we do not advocate reporting the presence of benign prostatic tissue at the inked margins as a standard part of the surgical pathology report on prostatectomy specimens.
Because benign epithelium at surgical margins is not correlated with postoperative PSA rises, postoperative PSA increases should in most cases continue to be considered “biochemical failure”.
Obviously, that’s not good news and certainly warrants more research.
This article from 2013 calls a few things into question:
Benign Prostate Glandular Tissue at Radical Prostatectomy Surgical Margins
The most interesting finding of this study is the identification of Benign Glands at the Surgical Margins (BGM) after both Open Radical Prostatectomy (ORP) and Robot Assisted Laproscopic Radical Prostatectomy (RALRP) was not associated with recurrence, either biochemical or clinical, during a median follow-up interval of 49 months after ORP and 28 months after RALRP.
Extending followup further should clarify whether BGM leads to low, detectable levels of PSA that may not meet threshold for defining biochemical failure. This may be particularly relevant with the widespread availability of ultra-sensitive PSA assays. The routine use of ultra-sensitive tests after treatment has not been validated and remains controversial in clinical practice, and may be particularly true in patients at low risk of disease recurrence and potentially in those with BGM.
Within our cohort, longer follow-up may reveal detectable levels of PSA associated with BGM that may not reflect actual prostate cancer recurrence but rather a clinically benign elevation of PSA.
In other words, there’s more research to be done.
9 thoughts on “Day 2,722 – No Probability for Me”
Wow, the contradictory nature of the advice/opinions we get is massive. It certainly doesn’t help making clear cut, informed decisions easy. As you say though Dan, the research has a long way to go, especially in the area of recurrence. My oncologist is very keen to “pull the trigger” and start further treatment even though my psa is still very low and slow. I ask myself the question, is this for me or him? I wonder if he has half an eye on his results table and is being careerist.
As it happens, i’ve agreed to commence radiotherapy, probably the same sentiment driving my decision as was present when I decided to go for RP, we all want to give ourselves the best chance, right? Who knows how I’ll view this big decision in 6 months/a year…..
Keep the faith and keep enjoying life.
Yes, the contradictions can be overwhelming at times, especially for those of us wired to plug the numbers into a spreadsheet and come up with a definitive answer (even if the formula in the cell is long and convoluted).
We all want the best chance in dealing with this, so it will be interesting to hear the oncologist’s perspective. For me, however, the further I travel down this path, the more weight Quality of Life places on the decision-making scale. We have to strike that balance between quality and quantity and, for each of us, our decision will be different. Who the hell knows what I’ll actually choose when the time comes. I don’t! (My spreadsheet hasn’t told me so yet.)
All the best,
My oncologist is fond of telling me that medicine is not like engineering (I’m an electrical engineer), it’s much more random. It certainly has been in my history. Broad changes were pretty easy to identify cause and effect. Small changes provided little to no info. About all you can say is your PSA is very low and increasing slowly. I’d be hard pressed to do much until something more dramatic happens.
Kudos to you for all the research you’re doing. I wish it was informing your decisions a little more.
Thanks, Jim. While I’m not a true practicing engineer like you, most of my adult life has been spent in technical roles (B.S. in civil engineering; learning shipboard engineering and combat systems; front-line manufacturing supervision / manufacturing engineer / manager), so collecting and analyzing data on which to make decisions has been at the root of pretty much everything I’ve done for decades. This shades of gray crap is for the birds. (At least the shades of gray we had in the Navy were easier than this: haze gray, deck gray, and machine gray.) Oh well. Adapt and evolve is about all I can do.
But you’re right. My numbers are “low and slow,” and I truly do appreciate the significance of that. That’s the silver lining in this cloud.
Adapting and evolving in the key to a good life imho. I’m no longer a practicing engineer. I’ve been retired for almost a decade. Now I’m a bum who takes pictures, plays video games (poorly), and sleeps late.
Still following your journey and checking in to your blog on a regular basis. You inspire me, sir. I am 63 with enlarged prostate plus Stage 1B cancer – have been in the “wait & watch stage” since last year. My PSA hovers between 6.2 & 7.7. Again, thanks for sharing your journey and knowledge.
Thanks for kind words, Ben.
It can be difficult to be in that “wait and watch” mode, whether you’re newly diagnosed or in my position. Still, it’s a better position to be in than some others with more aggressive cancer because we have time to research and make deliberate decisions.
Good luck with your monitoring! With luck, that’s all you’ll have to do.
I’m with you. Certainly Doc didn’t clear anything up. sounded like he came back to the beginning. I like the benign residual comment. I’m going with that. I wish you could have the same confidence but that’s not the reality of the situation. We continue to keep you in our thoughts.
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Hey Dan, I have my next oncologist visit tomorrow and am hoping that he will tell me that I have now been in remission for a year. As to statistics, I have started studying them a little, sort of by accident because they featured heavily in a book I am reading called Thinking Fast and Slow https://www.goodreads.com/book/show/11468377-thinking-fast-and-slow. As Before that I was feeling like I had won a lottery. Imagine going to a casino and being told you had 95% chance of winning! Keep the faith.