Why so many recurrences after surgery?

I benefit from the proponents and skeptics on both sides. It helped me to ask tough questions when I talked with both RO and surgeons. If I hadn't read books and heard the stories of others, I would have been lost when the doctors went over all the details--too much in a short time.

My experience was quite different from the case JNF described. After by biopsy found G8, I requested a meeting with my surgeon to discuss courses of action. He told me to first talk to an RO, and he scheduled a meeting with Sean McBride. I was impressed with McBride and surprised he said surgery is the better option for me. I returned to my surgeon and he told me what he'd recommend. I also met with a surgeon at another institution who gave me identical advice. I could push for radiation but I was convinced surgery fits me better. Just the experience of one guy.

My thoughts on this,

Since a high percentage of the biopsies are incorrect, radiation covers a wider area, thereby getting cancer cells lying just outside the prostate that surgery won't. So if SRT is successful after surgery, then it would have been successful as a primary treatment. Kinda of like an insurance policy

For me, I had two surgeon consults, first by the bearer of the bad news. He told me he was trained to cut it out, cut it out, cut it out, actually said it like that. Second one, cut wide and get radiation afterward.

Probably too many variables, no two cases are the same, and treatment outcomes varies depending on practitioner, experience, equipment etc....as the late great Terry Herbert stated, "the first rule of prostate cancer is, there are no rules"

Radiation seemed like a my best option based on my stats. Still seeing mostly surgery guys coming back for more....

My experience has also been outside of the conventional wisdom of many internet prostate cancer sites.

My diagnosing uro already had me signed up for AS when he told me I had cancer.
The chief of surgery at JH (a famous name) told me if he were me...he'd go get seeds. He gave me referrals.
The chief of radiation oncology at a major prostate cancer center in Manhattan told me he'd recommend surgery for me.
The big kahuna at UCLA who does SBRT told me "it really doesn't matter what you do, just do something". He's also the one who told me during a phone consult that RT and surgery, five years out...will end up having similar side effects. He told me with surgery....the SE's will be more immediate and get better with time. He told me the side effects with what he does don't show up at first...but tend to get worse over time. He told me they tend to meet around 5 years out from treatment.
JH radiology told me it didn't matter what I did. (I'll leave it at that....don't wanna get in an argument between anyone here and him).

Every doctor I spoke with told me the odds for cure, in my case...were the same.

I could go on and on. This, coming from meeting with probalby 15 doctors of different disciplines from different intitutions.

the biases I hear so much about never showed themselves during my journey. Sometimes I wonder if we need to have these doctors log onto internet chat forums so they can learn a thing a two about how best to treat PCa.

(I just can't leave a perfectly good post alone without inserting just a touch of sarcasm. That's just how I roll.)

The surgeon that performed my surgery, at our initial visit, told me that I’d be a good candidate for surgery, pending MRI results, and that surgery and radiation are equally likely to cure me. He also advised me to see an RO to learn about all options before I make a decision.

Saw an RO at MSKCC who told me that he is partial to radiation, because that’s what he does. But that he felt that I’d likely be cured with either treatment.

I guess I got lucky in that I got educated by good, ethical Drs.
Not so lucky with BCR though.

Some time back on here, we had a similar discussion that ended up with this conclusion, as best as I can remember how it was put....

That ultimately, the decision of how to treat (or, in some cases, whether to treat aggressively or not), is a highly individual decision. All of us make that decision based on a combination of factors, including:
1. The facts of our individual clinical case
2. What treatments are available to us, where we live
3. Things like work situation, insurance coverage, family dynamics
4. Our individual comfort level with the real and perceived risks, both immediate and long term
5. Our individual response to the physicians we have consulted (our comfort level with the individual/team)
6. Our interactions with others in similar situations and their experience--this one is probably much, much more important than we want to admit.

In the end, we each weigh these factors in our own way, and come to a decision. There really is no point in debating which factor deserves the most weight--that's our individual perception, and it doesn't have to make sense to anyone else. What I do know is this: My experience--and the experience of many others in this forum--suggests that if we do our homework within whatever parameters feel complete to us, then we make a decision we can be at peace with. And that is really the most important point of all.

If we're settled in that we did our best to make a good decision, then we are much less likely to experience decision regret, regardless of the outcome. Yes, it's important for us to push for better tools and better professional advice by those we pay for it--but it's skating right up to the forum rules (and human support) to criticize someone who made the best decision he could with the tools and information he had at the time.

You need to keep in mind that everyone is different; all cases are different. Different ages, different case characteristics, etc. Also outcomes are based partly on the practitioner’s skills, but also largely on the patient’s luck-of-the-draw. There is no one-size-fits-all treatment solution for all cases. But there is a very “common” (frequently occurring) description of case characteristics based on clinical stage T1c,N0,M0; discovered based on follow-up from slightly elevated PSA (under 20 ng/mL), Grade Group 1 or 2…in other words, a generally favorable risk case. There are more of these types of PC cases than any other. If I had a higher risk case than this “common” example, knowing what I know now 9 years after my own treatment, I would seek radiation therapy and probably a multi-modal therapy depending on how high the risk of recurrence was assessed. But for the “common” case, age is a strong factor in the decision model.

There is a reason for the “rule of thumb” that doctors often do NOT recommend radiation therapy for “younger” men 60s and under very commonly diagnosed with prostate cancer (not recommended because of their age): namely, late-term effects. If I was diagnosed in my 70s and I felt treatment was appropriate, I would probably go right to RT. The reason doctors align with this is that often the patient won’t outlive the deepening onset of consequential late-term effects. Also, surgery on elderly is more risky, and the RT approach is certainly more “convenient” if nothing else. If on the other hand I was diagnosed in my 50s, I would likely go right to RP for the flip-side of those same two reasons: I wouldn’t like the age that I am impacted by the late-term gastrointestinal toxicity, if that were to happen, and also I would be younger, healthier and more likely to fully recover from the pulse-impact of surgery. The recovery profiles for the “younger” men are quite different & opposite. With RT, in the “common” case, there is usually little or no side-effects in the immediate- or short-term; often men wonder whether the seeds were charged or the beam was turned on because they feel next to nothing. Some short-term effects eventually come and usually go within a few months. Late-term effects (which often go under-reported in the cancer treatment context because the patient goes to a different type of doctor) show up starting at least several years later, if they do show up, and degrade steadily from there. On the other hand in the “common” case with RP, the effects are immediate, but the recovery is relatively quick (although it seemed long at the time, with my 9-year perspective I know it was brief for me—a handful of months—and certainly was brief in the medical perspective which takes the long view). So now let’s repeat, that not all cases are the same and there are exceptions…but there definitely is the “common” paths for the “common” cases. Not being a hypochondriac, I’m aware of the worst case scenarios, but I don’t count on them occurring. In my personal case, as a “younger” man diagnosed with a “common” case, I knew that when I was going to hit my 60s & 70s there’d be other, new medical issues which would pop-up that I’d need to confront, and I wanted to put my PC issues in the rear view mirror for this long term perspective…not have my late-term RT issues start doubling-up and compounding golden-age issues.

So as I’ve described, there is no one-size-fits-all treatment mode. I chuckle at the ignorance of those who say something like “I’m a strong advocate for RT (or others who say the same about RP)” because they are really demonstrating their failure to understand the differences in case characteristics which define the world, and their inflexible bias which has distorted their viewpoints. I'm personally an advocate for treatment only when treatment is needed, and the right treatment for the unique circumstances of the case.

Post Edited (Normal59) : 10/16/2018 8:57:42 AM (GMT-6)

Normal59, you make many good points. One thing though: it is not all that uncommon for the immediate SEs of RP to be permanent, with no recovery after years. Or at the very least, to require future surgical repairs in hopes of at least partially restoring some of the lost function(various implants and such). And these SEs can happen with the lowest risk men as well as the youngest men, though the opposite groups are more likely to get these problems. These SEs are common enough that I don't know that I would call them outliers. Especially when considering that what a surgeon might call "full recovery" is not necessarily what a patient will call the same.

We have all seen the threads here on this subject. I don't think there is much bias here on that account. IOW, many people come to this forum not because their sex life/pleasure has been destroyed forever by surgery, but to decide upon what kind of treatment they should get, if any. Others come here shortly after surgery, with full hopes of a recovery in a few months or at worse couple of years. But we still have plenty of people here- some not at all that high risk- testifying to how their sex lives ended after surgery, and how it remains the same several years out.

But, I agree that the younger guys, with the best surgeons, and lower risk so that an attempt at full nerve sparing can be done with no "wide cut" needed(supposedly)- have much better odds of some -or sometimes a good bit of- recovery.

One thing to keep in mind is that support sites may attract more people searching for answers to problems, so it may not be the best sample to go by. Many people have surgery with few complications and just want to get on with their lives. I'm 3 and half years out and so far pretty pleased with my choice of RP. However, I realize that re-occurrence is always a possibility regardless of the choice.

Old beek at 76...could your age have been a factor in the ED...lets say at 75...I would hope so...or you were definetly screwed...and probably never had to have any treatment at all...I mean 75 with a natural boner...implies a very strong man ( who could beat the pca lying down)or a very strong imagination...no make the nose grow bigger than the boner with your reply...I feel quite confident at 75 I am quite a bit fitter and have more stamina than you did at 50 ...yet at 66(year of RP)...ED was starting to lower its...well...its head..

Having said all that...Ive counted quite a few angels on this one...might as well add another...I mean its all about engaging anyway... right? Riiight!! as Harry Dean Stanton would say and did say in the original Alien movie...He was the first to die looking for his cat...member??

Well if I can get this slow moving thread to ever come up I'll post a reply slower than molasses in Jan since the new format. I think this was mentioned last time this discussion came up How many guys have surgery things are ok and they just go live their lives I have in almost 2yrs time observed many guys that were on here but after surgery and things were going pretty good they never come back. It does seem like most of us guys that have had RP and BCR are kinda in a tough crowd. High Gleason, high psa, extra involvement, lymph nodes, seminal, nerve bundles and etc who knows what it would have been with RT? As has been said many times a person has to become their own advocate get a good team and medical facility and then proceed what they feel is best for them. All we can offer are experiences that we have been through ourselves!! Larry

Here's some perspective: There are a lot of cancer patients who wish they had our problems. Really.

lifeguyd, I don't disagree with you--with a caveat. IMO, before much more time passes, the standard of care will move to AS for G6 and at least some G7 diagnoses, and to something like SBRT or IMRT/Bracy boost for everyone else. Surgery will stay around forever, because there will always be (a) some patients who insist on cutting it out and (b) some men with "extra large" prostates or other comorbidities that make radiation impossible.

There is still a significant reality, even in the US, that the more advanced treatments are not universally available--and likely never will be.

Very interesting discussion, guys.

Surgery versus radiation. Little did I know it was, like, the Eternal Question of prostate cancer. And my gosh, as I've also found out, the politics of this disease are intense.

I had surgery myself and don't really regret it. Yet at least.

I do think the choice of surgeon is pretty critical -- even potentially decisive in terms of outcome and after-effects.

That said, I have to say that I don't for the life of me understand why some people choose surgery, and others recommend it, when the clinical data suggest a high probability (or even certainty) of the need for follow-on intervention. That seems to me the worst of all worlds.

Of course, most times there's no way to know.

I mean, on the one hand, I'm aware of some studies suggesting radiation/hormones is a better bet for those with high-risk Gleason scores. Then again, if the cancer, even when graded high-risk, turns out to be organ-confined, prospects are considerably better for surgery patients. No surprise there.

Another thing to keep in mind is a situation that applied to me. Biopsy came back as one relatively small area of 4+3. The radiation protocol at Hopkins called for six months of HT and a standard course of IGRT.

One little problem though. Surgery revealed that the 4+3 was actually 4+5. Oops.

As I understand it, the radiation/HT protocol for Gleason-9 is different from Gleason-7. So if I had chosen radiation/HT, they would have been giving me, in effect, the wrong regime.

At the end of the day, it's a bit of a crapshoot. You pays your money, and you takes your chances. Some people luck out. Some don't.

Or if you believe in a Higher Authority, then it has little to do with "luck." In fact for some of us, the word "luck" is just another way, and an imprecise one at that, of describing a Reality that has nothing to do with the conventional definition of "luck."

In any case, my own advice to anybody with prostate cancer would be to do serious research, get at least two opinions from good surgeons and at least one from a good RO. Then, make a decision and don't look back.

Because looking back accomplishes nothing. Nobody can know what would have happened if he had gone a different route. Things might have worked out better -- or worse.

Final note, for Gleason-6 cancer, or even a small subset of Gleason-7 cancer, I'm a total fan of active surveillance, and am glad that more and more guys are choosing it.

It's like my primary-care doc said: an awful lot of men, maybe even the majority, have or will eventually have prostate cancer. Many, perhaps the majority, will never even know it. And the overwhelming majority will die with the disease rather than from it.

But for those who do end up dying from it, well, it's not a pretty picture. Then again, there are a lot of ways to die, and few of them are pretty.

Anyway, I think the objective of our current medical science should be to NOT treat the men who will never even know they have the disease and to treat the others in a way best designed to cure their cancer but not ruin their lives.

Easier said than done, I realize.

________________________________________________________________________________

YOB: 1954.
PSA 4.4 -- March 2016.
PSA 5.9 -- January 2017.
PSA 7.7 and PHI 59 -- March 2017.
3T MRI of prostate -- April 2017; prostate 79cc, one PIRADS-3 lesion and one PIRADS-4 lesion.
Fusion biopsy -- August 2017; 14 cores, two of them Gleason 4+3, corresponding to the MRI PIRADS-4.
RALP at Johns Hopkins -- February 2018.
Pathology report upgrades G4+3 to 4+5.
Organ-confined; margins clear; SV clear; LN clear; EPE negative.
Continence: One pad for two months, then dry.
ED: Resolved at one month with aid of Cialis.
PSA <0.1 -- May 2018.
PSA <0.1 -- Aug 2018.