I had a biopsy 12/16 and had 4 cores with a Gleason score of 6, my Dr says in 4 months to have another biopsy to see if missed anything with a higher score if not monitor PSA and have another biopsy in 2 years. It's been a month since biopsy and I have some rectal pain starting, not sure if that is normal? I am 55 but PC seems to be hereditary. I guess my main question is that I see a lot of people here had a Gleason score of 6 and have had surgery, thought that was the least aggressive? Wondering why my Dr says monitor for now but a lot here had surgery? Is a score of 6 that bad and should I be concerned about the rectal pain?
I think I understand your question, but just to be sure I’d like to re-state it different words, and see if that is exactly what you are saying/asking; your “main question” (which I bolded
, in quoting you, above) appears to be this:
You have observed that many of the men here at this site initially diagnosed with a favorable-risk case (like you) seem to have pursued an aggressive treatment rather than monitoring, BUT your urologist is suggesting monitoring (Active Surveillance) for your favorable-risk case, and you are wondering why this doesn’t seem to be the more standard, common approach here at this site.
Did I get it right? That’s a really great and insightful question, and one the members here need to keep in mind. (You also asked about
how “bad” Gleason score of 6 is; I’ll address that, too.) You asked a great question, and I think others may follow you and ask the same question, so I’m going to take my time and give a through response.
Time after time, with patient after patient, doctors report that men who took their time and ran through a very thorough “patient education” before deciding what path to choose ended up being the most satisfied with their choice afterward. Amongst those who didn’t, there is a lot of “treatment regret.” In fact, here’s a summary quote from a New York Times article (google it, if you’d like) titled “Regrets After Prostate Surgery”: "Researchers say the higher level of regret among robotic patients suggests that they had higher expectations for their recovery, possibly because the robotic procedure is widely touted as a more innovative surgery than traditional prostatectomy.
" There’s also been plenty of treatment regret expressed right here at HW/PC—including some very sad cases of frustration and bitterness—and all you would have to do is to enter a couple keywords into the Search bar (start with: prostate treatment regret) to find those threads.
A favorable-risk case like yours comes with the gift of TIME
…but it is only a gift if you fully utilize it, and resist the urge that many who have come before you succumbed to, to “do something,” which typically meant “rushing” into a not-well-thought-out aggressive treatment.
Therein lies the key difference between what your urologist is suggesting (monitoring) and what many more urologists were pushing as recently as 5 or less years ago. The light has been shown brightly (and unfavorably) on doctors who have recently been urging favorable-risk to pursue aggressive treatments. It’s been known for a long time that these cases typically did NOT need aggressive treatments, and the dirty secret was that surgeons/radiologists were making a mighty profit on treating cases that didn’t need treatment…until recently.
Today, it is widely recognized that this OVERTREATMENT of low-risk cases has been occurring at an epidemic pace, and recently many of the ethical “thought leaders” in urology have come out strongly against aggressively treating low risk PC. They recognize that PC overtreatment has given prostate cancer a “bad name,”
and frankly today there is almost a “badge of shame” attached to a doctor for pushing aggressive treatments on low-risk cases. But it’s been a difficult price that has been paid—the estimate is that nearly 1.5 million men in the US have been overtreated for favorable-risk PC, and they are all walking around with the side effects of aggressive treatment include incontinence and erectile dysfunction amongst the most common, but the list of issues is very long.
In the last 5 or more years, many, many articles and books have been written on this very topic, and were written for men in exactly your situation
...and I'm going to guess you didn't know that before now. I encourage you to launch your "patient education" by reading this article (I Want My Prostate Back
) and then order this book (Invasion of the Prostate Snatchers: An Essential Guide To Managing Prostate Cancer
It was really the 2010 publication of the Invasion of the Prostate Snatchers
which kicked the door wide
open on more monitoring/Active Surveillance, and less aggressive overtreatment of favorable-risk cases because it was written by one of today’s more widely renowned PC-care experts and he was absolutely “calling out” his peers, his professional brethren, for giving the profession a “bad name.”
So now let me tie all this info directly to what I understood your question to be. What you are seeing in the signatures of many favorable-risk case site participants here is the lingering, ongoing travails of the men who have suffered the harms of treatment and are now navigating the slippery slope of one thing-leading-to-another. Those with erectile dysfunction write about
ions for pills, or shots, or pumps, and some have gone so far as surgical implementation of pumps to achieve temporary, on-demand, erections. Those with incontinence write of weighing their pads, or adult diapers, and again some have resorted to surgically installed clamps which they can release whenever they need to go. The pages here are filled with these and other accounts of the numerous side effects men suffer. (Just for completeness, let me also clarify that there are also plenty of other posts of men with unfavorable-risk cases—although favorable-risk cases occur much more frequently—because those cases are pursuing actual beneficial treatment solutions which continually evolve, and are also sharing experiences with the side effects of those treatments, which are quite aggressive. In fact, for even more completeness, I should also say that there are a lot of posts at this site on random topics just amongst men who share the bond of all having dealt with the travails of PC.)
But you see far fewer posts from those men who have spurned the emotional call to "do something" and have taken the path of monitoring (AS). Many of them used their "gift of time" to make a data-decision rather than the much easier emotional-decision to "do something." They simply don't need to hang around here because they are not suffering the harms. They pretty much check-in once per year to post their annual PSA result, or every 2 or more years with their biopsy results. Some do move on to treatment because their cases have progressed...and then we typically continue to see them around here post-treatment asking about
this side-effect issue or that issue. Most of the guys on AS, though, are off living their lives elsewhere. That's why it appears
that more favorable risk men here have pursued aggressive treatments. Appearances can be deceiving.
Regarding your question on Gleason 6 (which should more properly be referred to as “3+3”)…despite the confusing numbering system, 3+3 is the lowest possible score one can have following a prostate biopsy. That has, for years, thrown men off thinking "6 out of 10" must be pretty bad...I had better do something
. For that exact reason, and to help curb the gross excesses of prostate cancer overtreatment, a new
numbering system has just recently been introduced. In another thread a year ago, I wrote this:
There has been a widely recognized “counseling problem” with the current system…mostly with the Gleason 6 (3+3). Being diagnosed with a “6” out of “10” sounds more ominous than “low” grade or “grade 1,” which might better reflect the natural history of these tumors. A fear amongst PC care thought leaders is that the current Gleason labeling scheme reactively leads low-risk men to a slippery slope resulting in overtreatment of the disease. [The grading system was making the overtreatment issue I described above worse!] Historically, the majority of patients with even low-risk PC received radical treatment, although the use of Active Surveillance (AS) is increasing globally. In many regions, >40% of men with low-risk disease now receive initial AS (July 2015 report) and these numbers continue to grow.
So, in the new grading system, which is being slowly phased in, you are in prognostic grade group 1
...which is more clearly the lowest possible.
A year ago, I wrote that AS uptake amongst eligible men was >40%, but more complete contemporary data shows that between 50-75% of men eligible are pursuing AS today as their initial approach because they really don't need their prostates "snatched" by over-bearing surgeons; more and more are realizing that their disease—despite being "branded" as cancer
—has traditionally had treatments where the harms outweigh benefits.
You question may have been more profound than you realized... It's too bad that 8-years ago when I was diagnosed with a favorable-risk case (3+4, with only a small amount of Gleason pattern 4, which generally means that it acts like 3+3) nobody
suggested AS to me. If only I knew then what I know now, that would have been my initial path. As I said, it wasn't until the 2010 publication of the Invasion of the Prostate Snatchers
book, after my diagnosis and aggressive (over-)treatment that AS really became a "thing," and the momentum away from PC overtreatment started to swing, and men started to realized (if they took the time to think before rushing a response) that they really didn't need to subject themselves to an unnecessary, injurious treatment...even if it was what the good doctor "recommended."
Hope this answers the questions you were asking…
Post Edited (JackH) : 1/15/2017 4:26:07 PM (GMT-7)