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were you "overtreated" for prostate cancer?

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Prostate Cancer
Were you overtreated for prostate cancer?
yes - 7.9% - 5 votes
no - 76.2% - 48 votes
i don't know - 15.9% - 10 votes
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Posted 5/19/2013 4:18 PM (GMT 0)
I think this is a valid question to the most obvious of people impacted. If you feel you have been overtreated and are dealing with significant issues to a treatment that caused great harm, you are going to vote. And this forum is well represented by all gleasons.

I agree with Ed. What the experts say should have no bearing. The patient should be able to answer this question.
Posted 5/19/2013 5:03 PM (GMT 0)
Ed my answer is I don't know. And I may never know. It's possible that after surgery when my PSA dropped out it would never have risen. Thus the three years of feeling the effects of HT would have been overtreatemnt. The 38 fractions would have been over treatment if my PSA was to never rise. Any side effects from adjuvant therapy I feel for the rest of my life would have been unnecessary.

SO I don't know is the only logical answer for me.

To your other question, I said that you should ask the G6 guys to answer the question. It's as simple as that. They are the vastly most likely patient that falls into the controversy. Are there guys whom were given a higher Gleason or not was not what I said. But I do know that less than 25% of men are upgraded at surgery. So if greater than 75% of these men say they were not over treated, that is an interesting contrast to known data.

Tony
Posted 5/19/2013 5:08 PM (GMT 0)
Another interesting question would be this one:

Do you believe that PSA screening saved your life?

Yes
No
I don't know

I am willing to bet that even though their treatments are still ongoing that 80% of men will answer yes and that is a statistical impossibility. That would be saying that of 250,000 men diagnosed this year that 200,000 would have died from prostate cancer if not for the PSA test.

If even half of men said yes to this question ~ we have an education issue...

Tony
Posted 5/19/2013 5:09 PM (GMT 0)
Ed, yes I do believe that the overtreated generally don't know it or are in denial.  Having said that, and to agree with RCS, the definition is in the eye of the beholder. 

"Overtreatment" to me, you or anyone else on this forum may mean something quite different when applied to themselves than to a panel of scientists who collect evidence from unbiased samples.

I clearly admit to my own bias on this and answered that I "feel" that I was not overtreated.  All I'm saying is that the answers to this poll, while entertaining, were totally predictable given the sampling.  You asked the question, "...if you feel you were overtreated...".  Very few will feel that way because of the reasons that I mentioned earlier and JohnT added to.  The answers would likely be quite different if you submitted the total cumulative stats from HW to a group of scientists who had different criteria than each of us personally have.

Now, you could ask the question in a different way to see if anyone here believes that overtreatment is a reality.  For example, suppose we had a 69 year old man who was diagnosed with G6 cancer, clean DRE, PSA 5, 1 of 16 samples with less than 5% cancer in that one core. The man has surgery but both nerves are taken because his surgeon is cautious.  Post surgery pathology confirms the biopsy results. Ten years out the man is cancer free but has total ED and occasional incontinence.  The man himself feels that he was not overtreated.  What would you say?

Jim

Posted 5/19/2013 5:35 PM (GMT 0)
Tony,

What's implied in Ed's question is if you "feel" you have been overtreated.  I don't believe his intention was to ask the HW members if they were 100% sure that they were overtreated.  Ed, correct me if I am wrong. 

None of us know most things 100%.

JL

Posted 5/19/2013 5:55 PM (GMT 0)
Jerry,
The answer does not change. Nor do I see a difference because no one can directly answer that question. We can only answer with our hearts if it's a feeling, and we can only guess with our minds. I have always stated in my journey that the surgery was easy for me, the HT was the toughest part for me, and that the treatment I worry about most into the future is the radiation. Nothing has changed for me here and to some degree of uncertainty, if the program I elected to do results in never having a relapse nor any SE's then I would side with the treatment was reasonable. But that still does not answer the question. To date I feel like I still don't know. Would I do my regimen again with what I know today and I think I would.

But your case and mine will give us that feeling a heck of a lot easier than the G6 guys where the gray areas is most commonly found. We likely needed at least a basic form of treatment, and we probably both have done well in our decisions.

So what would you bet the responses would be to my hypothetical question "Do you think the PSA test saved your life". I say that the respondents would answer mostly yes even though that would be a statistical impossibility that 125,000+ men a year are saved by screening.

Tony
Posted 5/19/2013 6:20 PM (GMT 0)
Tony,

A couple of different points that may not be the subject of this thread, but I'll answer your last question first:  "Do you think that the PSA test saved my life?". 

- Just to be completely honest here---No,  I don't consider my life saved.  I had a good PSA at 40 and a questionable reading of 4 at age 44.  But I think that having annual PSA tests and annual DRE test at ages 41, 42, 43 could potentially have saved my life.

- As a T3B after surgery, you and I must agree that further treatment was needed; either radiation or radiation and HT.  Thus, one would conclude logically that if you needed treatment, how can it be overtreatment.

- A huge number of threads on this forum are about the side effects from treatments where PC has been essentially cured.  You agree that there should be good representation from the G6 crowd here to answer this question, correct? 

But, I see your point that for you and me answering this question is different than the G6s.  btw - had a dream once that my number was flipped and was a 6 instead of a 9.  In my dream I was overtreated....   

JL

Posted 5/19/2013 6:39 PM (GMT 0)
"- As a T3B after surgery, you and I must agree that further treatment was needed; either radiation or radiation and HT. Thus, one would conclude logically that if you needed treatment, how can it be overtreatment."

You probably more so than myself can go with this. Keep in mind that while I was T3B after surgery, the nomograms that were available showed that there was still a large percentage of men (10% to 25%) that never needed another treatment and still enjoyed a lifetime free of PSA relapse. I reasoned by being in my 40's that I was not likely that case and probably reasonably. But did I need HT and RT both? I'll never know.

LOL As to your last sentence. I just envisioned your doc saying "Jerry you have nothing to worry about you have 6 Nosaelg disease which I have really never even seen...oh wait" as he flips the chart around "Looky there you have Gleason 9...never mind. Man you're screwed".

Tony
Posted 5/19/2013 6:40 PM (GMT 0)
We seem to be going around in semantic circles here. But the question was straightforward.

It is interesting that so far only 1 out of 36 respondents FEEL overtreated. That's rather telling.

How do we personally draw any right/wrong conclusion? Maybe a better question is APPROPRIATELY treated? If you are a G6 but become a G7 after surgery, I doubt if you will consider yourself overtreated. If you are a G6 and come out of surgery a G6 with some bad ED and bad incontinence, you would feel otherwise. This is a nebulous topic for us to draw individual conclusions.

Mel

Posted 5/19/2013 6:56 PM (GMT 0)
Tony - priceless...noslaelg disease is nothing to laugh at...but I am.
Posted 5/19/2013 7:16 PM (GMT 0)
..I was a fool and I was in the dark and did not see even though my father had a light and shined it for me. My father had prostrate cancer 12 yrs ago at age 58 he was G6 and did open surgery. He advised me of my chances and told me repeatedly to get the physical and PSA test. I was under the impression of over diagnosis over treatment and was hesitant. 3 years ago at age 39 dad stated the time has come to test test test, I said yeah I'm gonna do it just not now. I am in good shape and it seems way to young to worry. I am gonna do it just not now. Fast forward to now age 42 and see that I should of tested earlier cause it may be to late for me now, my dad has been cured. Dad was right and my over diagnosis over treatment attitude might just have been my downfall. This is just my personal story but none the less I am a poster child for early detection, young with aggressive PAc..

.....Nick.........
Posted 5/19/2013 7:24 PM (GMT 0)
I was a G6 going in and a G3+4 out.  Only 10% with all margins neg.  I consider this pretty minimal disease, but a year later I am impotent at age 53.  I feel that this is overtreatment and knowing how I feel and look at life now I would not have had surgery.  I would have considered AS and perhaps looked at proton or some other emerging therapy.  My impotence consumes my life and has completely ruined my quality of life.  Yes, shots work but its not the same in any way.  I have made some progress but am realizing I am not going to be one of the lucky ones.
Posted 5/19/2013 7:41 PM (GMT 0)
Nick,

I can relate to that more than you know. But, don't beat yourself over it. Moving forward, just develop an attitude to beat the crap out of it.

Jerry
Posted 5/19/2013 7:52 PM (GMT 0)

Jerry L. said...
Nick,

I can relate to that more than you know. But, don't beat yourself over it. Moving forward, just develop an attitude to beat the crap out of it.

Jerry

..Thanks Jerry, I will do the best I can with what I got. Yes, war has been declared so I better get my game face on and beat the crap out of this beast..
..Also wishing you the best in this battle........Nick.....
Posted 5/19/2013 7:58 PM (GMT 0)
HCV,

Thanks for your story and sorry you have deal with that. How's the incontinence? Is ED your main issue?

Everything is relative because I would consider you one of the lucky ones as it relates to prostate cancer. Your worries(and I have those issues as well) are the least of my worries.

Jerry
Posted 5/19/2013 8:30 PM (GMT 0)
I was a G6 (3+3) and underwent surgery. I don't feel over treated at all since I was the one who decided on the surgery. One uro, in fact, suggested WW.
Posted 5/19/2013 8:34 PM (GMT 0)
Ed,
I'll play..No, I was not "over treated"..I was diagnosed by "severe symptoms" since my doctor believed in the "conservative approach" and ignored my high psa (4.89) with no dre 11/2 years before. Anyway,
after biopsy with 5 g8's (4+4 with tertiary 5) and 4 g7's (4+3) out of 10 cores I was offered "open surgery" OR "hormones"..radiation wasn't offered since "we don't do that here"..
Yeap, I ran out of my initial consult and became educated fast; I couldn't stand to look at nomograms and still don't..bone and ct scans were negative or inconclusive and my RO diagnosed me as t3a with ece--he discovered it with his long fingers--he's 6'4...i feel that the original treatment offered was under-treatment and the treatment I selected--radiation + hormones--was both appropriate and the most aggressive at the time..I did all that I could and am trying to starve the beasties to death with hormones--we'll see how this plays out!
Posted 5/19/2013 8:51 PM (GMT 0)
No--happy with treatment and results. Once I found out I had cancer, I needed to get it out or my quality of life would have suffered by the constant wondering. Treatment was the only choice for me.

Tom
Posted 5/19/2013 8:53 PM (GMT 0)
Appleseed - I have some of the same questions in my case. I took a 4 year hiatus from PSA testing, largely because mine had come way down from around 5 back in 2002, and all of the discussion about over-testing and over-treatment made it easy to think that I'd just wait until age 55 and get it checked again.

Surprise! At 55 I have G9 5+4 in 80% of two cores, 4+5 in 100% of two cores, perineural invasion, 3T MRI indicated ECE+ and neurovascular bundle involvement. CRAP! Earlier annual checks *might* have caught this before it got that far, but who knows? Even with a PSA around 4, it would have been a push to get another biopsy even 6 months ago.

Now, I'm on HT and going for IGRT by 3D IMRT, + whole pelvic due to risk of lymph nodes involved, the whole thing.

Is any of this worth doing? Is any of the treatment going to even extend my overall survival? Or, do I have 10 years no matter what, and now I'll spend all 10 of those dealing with side effects due to early treatment, and if I did nothing until painful bone metastases develop I'd have 2 years of side effects before succumbing to it anyway?

All of these swirling arguments kind of make me nauseous. How the hell am I supposed to know, when the whole urological / cancer community is just arguing with each other?

Post Edited (Redwing57) : 5/19/2013 3:13:39 PM (GMT-6)

Posted 5/19/2013 8:57 PM (GMT 0)
This poll just confirms what I said the other day. All these threads always wind up the same way. Contrary to massive over treatment I personally believe has been going on for the last 6 years this forum is a unique odds busting exception. Just about all here without treatment would've died. Even a guy who has a 23 core biopsy with one Pca core would've been at death's door in a few years, I'm sure. Here the PSA tests are only used to detect treat lethal aggressive cancers. Be they be g6 to g10

This is a stupid poll yes stupid. Here's a poll that basically asks was your treatment worth while? Few will say no, it goes against human nature, the results are predictable. Few will ever admit to a decision that was a major ordeal in ones life if only for a short time, could've been avoided if they just didn't panic, or be talked into something they later would regret. A better question would be are there times you ever have any doubts or regrets. Or once again are the participants of HW are a unique population who doesn't belong to the thousands of men whose radical treatments not only did not prolong their lives but in various degrees, slight to major lessened their quality of life. Maybe the key is for all diagnosed PCA victims to come to HW. For here all their treatment options or at least 95% will be correct and their lives saved from certain way before their time, deaths.
Posted 5/19/2013 9:19 PM (GMT 0)
Ziggy9:

Sorry if the overwhelming results conflict with your personal beliefs.

Why say that we have to justify our choices (hence the overwhelming results)?

Look, the people who post here tend to be quite intelligent. It seems we are capable of analyzing our situations. In fact, if we post here we have probably been doing a lot of analysis from the time our PSA's started rising. I frankly resent the insinuation that our answer is based on merely justifying our decisions.

In answer to your embedded question, believe it or not, I never even doubted any of my tx. decisions. I agonized making them, but once I arrived at a tx. decision, no doubts whatsoever!

Mel

Posted 5/19/2013 9:25 PM (GMT 0)
Very funny Tony :-)! You have changed!
Posted 5/19/2013 9:43 PM (GMT 0)
Ziggy9,

Do you feel you were over treated?
Posted 5/19/2013 9:52 PM (GMT 0)
43 guys answered so far. I'd love to hear from the 3 guys who answered "Yes".
What are your stats and what would you do differently?
Posted 5/19/2013 11:30 PM (GMT 0)
Worried:

I think HCV is 1 of the 3 and he explained why he felt that in a post a few posts back on this page.  As for the other 2...not sure, but would be interesting and there is certainly nothing wrong with voting that way. 

Jerry

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