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Posted 5/1/2016 6:45 PM (GMT 0)
While it’s fine and often appropriate to unyieldingly & unceasingly support others with such words as “Whatever treatment decision a person makes is theirs to make. Whether you agree with it or not, once the decision is made, your task is to support them through it"...

...there may be a psychological “flip-side,” however, for some adhering rigidly to an unforgiving “no regrets,” no matter what, perspective while looking into the mirror.

“Treatment regret” has been measured and documented in studies, particularly amongst men who rushed into an aggressive treatment for favorable-risk cases. Such cases are typically acknowledged after-the-fact as having yielded NO survival benefit but typically causing multiple long-term, life-altering side effects.

In the real world, past the denials, men may experience serious mental and social consequences to their treatment that affect their social relationships, their marriages and their entire sense of “self.” Here at HW/PC, we see the full spectrum: from men stepping up to this realizations who seek help, to others who reflect the male tendency to believe that they should just unyieldingly “tough things out” because any expression of their very real distress may be seen as a weakness they are unequipped to admit to. It might even be worth the self-examination of how one portrays himself to others (newcomers, in particular, in search of their own individual path); acknowledging "treatment regret," or registering a "man-up."

You can read more in a recent PC Infolink article about the psychological damage that a cancer diagnosis “often leaves in its wake for patients.” https://prostatecancerinfolink.net/

Yes, Dan0, “rushing to treatment” is a real thing…even today.
Posted 5/1/2016 8:01 PM (GMT 0)
Jack:

It must be nice to be in everyone's head and know so much.

While I am sure there might be an exception or two somewhere, when someone says they have no regrets...that's what it conveys to me.

My particular thinking (I can only be in my own skin and talk about myself):

I made my decision after careful reading/research and consultations. I have no doubt in my mind that I made the best decision with the information at hand. That's it. I personally don't look back.

Now, an interesting thought for me: what would I do (or advise someone else) today under the same circumstances? I think I would get one of the newest MRIs to further get some more details. If that added no new information, then given my psyche and the SE profiles, I would make the same decision, for the same reasons (I won't regurgitate those arguments!).

But, that's just me. I am the one person I really know a lot about.

Mel
Posted 5/1/2016 9:42 PM (GMT 0)
I am simply speechless
Posted 5/1/2016 10:01 PM (GMT 0)

compiler said...
Jack:

It must be nice to be in everyone's head and know so much.


Mel, I’m not really sure what makes you say that…that’s not what I said; were you’re thinking of some words you’d like to put into my mouth that I didn’t say? I pointed you to the Infolink article, which I’ve read and shared, as discussed, about the psychological effects of cancer diagnosis. I think I described very accurately and in detail the broad experiences some, maybe many, feel, as well as the so-called male psyche. And there’s no denying (and no shame) the fact that we’ve seen the full spectrum here at HW/PC which I described. Did you read the article at PC Infolink? We shouldn't put our heads into the sand about the realities...I wasn't the one who invented the term "treatment regret." It seems to be a sport of yours to try to put words into my mouth…but I'm going to keep calling you out on it when it simply doesn't match what I actually said…



edit: I actually initially misread your statement, above. While I'm not in anyone's head, it is good to know a lot! hahaha

Post Edited (JackH) : 5/1/2016 4:16:42 PM (GMT-6)

Posted 5/1/2016 10:23 PM (GMT 0)
I was going to say something that would have drawn the ire of the moderators. I note I don't see a lot of treatment regret on this forum. Maybe it's because our whole purpose IS education, and those who come here before treatment tend to make good (or at least better) decisions?
Posted 5/1/2016 10:53 PM (GMT 0)
We are the winners of the, "Get it out, get it out!" race. Diagnosed 3/11/15 RRALP 4/2/15. Was it the way to go? We will never know, however since the surgery we have:
1. joined this forum
2. attended a PCa conference
3. gotten a post surgical consultation with a well known PCa oncologist
4. had 3 PSA with less than 0.03
This week we will head to our one year post surgical appointment and God willing it will be another "less than 0.003"

We may have overreacted the first time around but by golly, we will be far better prepared if the beast returns!
Posted 5/2/2016 12:29 AM (GMT 0)
First off, let me say that I have relatives in the medical field who not only are familiar with prostate cancer treatment options, but were also able to point me to the best surgeon once I made that decision. So my journey from diagnosis to surgery was on a fast track from the start:

Diagnosed Jan. 23, 2012----prostate gone February 10, 2012. It couldn'the go fast enough for me. So far so good.

Tom
Posted 5/2/2016 12:34 AM (GMT 0)
JackH:

I am not misrepresenting your words or your little innuendos. Guess I'm calling you out on that.

I am sure that there are folks who regret their treatment. No doubt about that. We have seen this on a very few occasions here on HW.

What I did say was that I take at face value: those who say they have no regrets. I believe them. I have said I have no regrets. I don't. At all.

YOU SAID:

>>>>>>>>>>>>>>>>>
there may be a psychological “flip-side,” however, for some adhering rigidly to an unforgiving “no regrets,” no matter what, perspective while looking into the mirror.
>>>>>>>>>>>>>>>>>>>>>>>

Those are YOUR WORDS. There is a clear innuendo that when a guy says he has no regrets, he is not being truthful. Of course, YOUR WORDS are vague enough that they can just be termed innuendos, but I didn't put them in your mouth.

Carry on.

Mel
Posted 5/2/2016 1:39 AM (GMT 0)
RCS:

Yeah, I know.

Anyway, not much to add on this thread.

I am sure we will see the same topic on other threads..ad infinitum

Mel
Posted 5/2/2016 1:56 AM (GMT 0)
What do you think "treatment regret" is??

I didn't regret it, until I realized that I did. Prior to that, no regrets. Perhaps I was not smart enough before, or "educated" enough, or just didn't look hard or far enough.

Post Edited (JackH) : 5/1/2016 7:59:25 PM (GMT-6)

Posted 5/2/2016 11:12 AM (GMT 0)

It seems that this same discussion comes up in a lot of the "Just Diagnosed" threads.

I'm not saying that we're beating a dead horse here(BMWA), but I would say that in this forum, it is widely understood, and advised to seek as much info and try to speak with all the discipline clinicians available so that one might make the 'Best For Me" decision.

Also, and to the old adage that an individual is a singluar entity, there does exist a subset of individuals who do simply want it out at all costs.

In those cases, it's best to just say to oneself "Not my personal choice, but....I respect their couragous decision".

Back to the original post...In Ontario Canada, the Provincial "Standard-Target" is 3 months from Dx to Treatment.

Posted 5/2/2016 11:53 AM (GMT 0)

Newton451 said...
It seems that this same discussion comes up in a lot of the "Just Diagnosed" threads.

I'm not saying that we're beating a dead horse here.

We are. That's because some folks just insist, in Mel's (Compiler) words, on strangling an idea, rather than caressing it.
Posted 5/2/2016 12:03 PM (GMT 0)
....... hook, line and sinker!
Posted 5/2/2016 12:17 PM (GMT 0)
hahaha...you curmudgeons think that the world of HW/PC revolves around YOU! hahaha!

Your comments remind me of the Commissioner of the US Patent office who said in 1899: "everything that can be invented has been invented."

Guess what, there are newcomers to HW/PC every day. The posts I make seek to bring value to them.

If all you have to say is something about other members or "posts-about-other-posts," maybe you should consider what value you are bringing?
Posted 5/2/2016 1:46 PM (GMT 0)
For those who are wondering what "treatment regret" is, here's a good first-person article:
www.nbcnews.com/id/35874966/ns/health-mens_health/t/surgery-regrets-i-want-my-prostate-back/#.VjveYrerRhE


You can compare, for yourselves, the words in this article to some of the words in posts here at HW/PC...
Posted 5/2/2016 2:03 PM (GMT 0)
JackH thank you for the link to that article. I've not had surgery...yet.
Posted 5/2/2016 2:08 PM (GMT 0)

RCS said...
....... hook, line and sinker!


Yup, i should have taken your advice to Mel. Sorry.
I'm done with the thread, like Mel.
Posted 5/2/2016 2:53 PM (GMT 0)

Robertmp said...
JackH thank you for the link to that article. I've not had surgery...yet.


You're welcome, Robertmp. "Rushing" and "treatment regret" are definitely closely linked topics, as is the depth of the "patient education" that one can gather when taking the TIME that favorable-risk cases—which are the most frequently occurring types of cases—allow. And it's not uncommon that these topics are absent from the brief discussions men have with their urologists in the short period of time between diagnosis and treatment options.

From you other posts, you haven't had what you might label as "outstanding" care, either...sorry to hear that, but glad that you've found this site for additional peer-to-peer inputs!
Posted 5/2/2016 2:58 PM (GMT 0)
speaking of regret, there should be something called "posting regret", because I am feeling it.

what value can one bring if they continually redirect the primary topic?

it just occurred to me.

Hi Jack is both a greeting, and a statement.

be well
Posted 5/2/2016 3:04 PM (GMT 0)
Dan0! You're back! It looked like you had disappeared. I think I addressed your question pretty completely here, days ago:

JackH said...

Dan0 said...

Dan0 said...
I guess I don't really buy the whole "rushing men into unnecessary prostatectomies" line, at least in this more educated era.



As you can see from many cases right here at HW/PC, "rushing" remains commonplace even in the contemporary period.

You have, by the way, made the proper delineation by clarifying the subset of men who quickly seek unnecessary treatment, which is most frequently an "elective" surgery but may also include BT or other treatment modes. A unfavorable-risk case, on the other hand and very important to differentiate from, is typically appropriate to move promptly to treatment mode; HT often begins right away.

However, you have mixed-up the interralationship between TIME and PATIENT EDUCATION. You see, the whole thing with favorable-risk cases is that they DO have the time necessary to become well educated about the disease, the risks, the harms and the benefits prior to making a decision. Those who rush to not take the time--and there is no shortcuts--to become well educated about the reality that there essentially are few if any benefits to aggressively treating low-risk PC, only harms. The rush is all about the panicked, emotional response.

Also, I didn't read every reply here word-for-word, but I did not see mention of the second biopsy reading by a prostate-expert pathologist, which should be done prior to discussing any treatment modes. One of the rules-of-thumb for favorable-risk men is this: anyone who is initially diagnosed initially with favorable-risk PC and moves to an immediate treatment without getting an expert second opinion on biopsy slides is at increased risk of being overtreated.

BTW, the medical field generally looks at "immediate treatment" for favorable-risk men with PC as anyone seeking treatment within one year from the time of the initial diagnoses from a prostate biopsy without a follow-up biopsy. In general, men with favorable-risk PC who move to AS/deferred treatment will have their second, confirmatory biopsy in the 12-18 month timeframe.

Posted 5/2/2016 3:09 PM (GMT 0)
Why would your risk category not increase after treatment, Jack? If you mean C and H' s didn't be cause the up grade was only a soft 7..I will defer{not up on risk catego@ries,per se}to your knowledge.. But in my case where I was 3+3@Lcl path then upgraded to 3+4 at major Medical Center U of Wash,the Dub. Ill stop there mid sentence and say if that were it, based on what we have agreed on ,I think, ok still low risk, but after treatment and post op path came back I was 4+3 tert 5.. It does not make sense to me that I would be in the same risk category as pre treatment.. Again to paraphrase your words[ words are nuanced]and I am both busting your chops a bit, and providing constructive criticism.'
' you don't want to provide misinformation ' I will say right now, that miscommunication, in writing only,is rampant by its very nature.. but thats where it is online.. sometimes even face to face..unless both parties trust each other…which is admittedly difficult and frankly getting more so even when it is in both parties interest to do so…
Posted 5/2/2016 3:18 PM (GMT 0)
Bozo, you may be opting to use the PC risk categorization for something other than what it was designed, created, validated and intended for. It's purpose is for pre-treatment treatment planning...to stratify patients into like categories who will have generally similar outcomes.

You probably wouldn't be the first to use a hammer for a screwdriver.


There are other tools and nomograms to predict post-treatment outcomes.

Post Edited (JackH) : 5/2/2016 9:44:09 AM (GMT-6)

Posted 5/2/2016 5:05 PM (GMT 0)

AnnieW56 said...
Why are you guys arguing about this? You cannot put everyone into a one size, fits all category. Everyone is so good about saying that prostate cancer is slow growing and you have months to make that decision. That is not necessarily true and you are giving misinformation. As you have all done such a great job of pointing out, prostate cancer takes many forms and is a wily beast. You cannot tell someone that they have months to decide when no one knows for certain what type of cancer they have. Even the grade is up for opinion. Perhaps it has already spread, perhaps it hasn't and perhaps it will in the near future. No one knows for certain and the decision that anyone makes at any point in time is the decision that is best for them. Do they regret it? Who knows. Maybe on the morning they wake up with a wet bed or were unable to satisfy their lady friend's need the night before. Then there is the morning they wake up dry, feel great and the beast is sleeping. The point I am trying to make is stop making everyone feel like they should take MONTHS to decide what to do. Some people don't need months. Some people will need years. The one thing we have to agree upon is that at some point in time everyone has to make the decision that is best for them. It is not up to us to judge them or make them regret not taking 2 more weeks to decide or make them feel less than because they didn't seek out 32 opinions. They did what was best for them.


Thanks for your comments AnnieW56. And I agree. And your husband's case was a great example of a non-favorable-risk case where one should NOT take months to decide.

And you are very correct that the element of TIME does not apply to ALL prostate cancer cases, and that one size does not fit all. I also made this strong point in my very first response in this thread, following your earlier post. I wrote:

JackH said...
A unfavorable-risk case, on the other hand and very important to differentiate from, is typically appropriate to move promptly to treatment mode; HT often begins right away.


And although you didn't quite say it in this way, I truly believe what you were saying is a point I've made repeatedly: we do men at both ends of the spectrum a dis-service by lumping all cases together. Prostate cancer is really two, or three, or perhaps a wide spectrum of very different diseases. This is, of course, why some PC professionals have argued for re-naming low-risk PC as something else...something without the name "cancer" in it.

But here's the important take away... If your case initially looks like it is a favorable-risk case, then yes you should take the time that virtually ALL doctors recommend to both educate yourself AND continue the evaluations necessary to solidify the evidence that your case IS favorable-risk (and may need no treatment whatsoever)...like getting an expert pathology reading, a second, confirmatory biopsy or an mp-MRI, etc.

If your case does not have evidence that it is favorable-risk (the majority ARE favorable-risk), then this take-away does NOT apply to you...

One size does not fit all in the PC-world.

Post Edited (JackH) : 5/2/2016 1:09:34 PM (GMT-6)

Posted 5/3/2016 1:45 AM (GMT 0)
All's I'm saying Jack is If I see the discrepancy.. others will too…especially new posters…who are a lot smarter or dumber than you think... matters not which…and they have a place at the table…and make decisions based on what is put out and I wanted to clarify the point…fear not they are either smart or dumb enough to see my point… How did I know I would be addressed Bozo on this one…you are getting wearily predictable…but as in "good fellows"….you amuse me…..so I will still see an H and not an A as your middle inuit…to take a page from your initial post to compiler I know you would want to be known as some one who can receive in the same spirit that you give… As we all do, as we are becoming, you are presently in the magistrate phase of life… that will change and you will have the words to answer same fwiw… Im saying... based on the phase I was referring too…not much…Kew
Posted 5/3/2016 2:05 AM (GMT 0)
Ima thinking some are taking Jack way to seriously…he has tell's we all do…I respect create-ures…who don't give up…we all do…which is why Milton was wrongly accused of glorifying Satan in Paradise Lost…{the locals were not that forgiving}...the question being is your end point to reign or to serve…. come on guys this ain't rocket science…which ain't either…BTW… Kudos to the Mods on this thread Its frank but not too testy…but that would be a given…Im kidding, I'm kidding…Damm you Oscar Wilde...
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