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Posted 2/15/2010 4:27 PM (GMT 0)
I noticed a few times over the weekend, in different threads, that some are beginning to tell people that their stats are or aren't this or that when they post here. Our mantra is still 'Everyone is different, so your's ain't necessarily what mine is". Let's be careful when posting to not tell people that their whatever- cores, psa-time line is or isn't something that can be measured and compared to others. This is especially true when posting in the AS threads. Emotion can sometimes override common sense, so let's be more aware of our words when discussing stats and decisions. Especially if we are sorta 'practicing medicine' when speaking to new folks, who may not have educated themselves enough yet to see that we are all different.
Posted 2/15/2010 6:08 PM (GMT 0)
Your point is well taken,

Especially of the lower risk guys I see a lot of jockeying for recommendations to do nothing. The fact is that only 15% or less of guys diagnosed are in the AS category by almost all guidelines. But I'd bet that 85% of new guys are told that they don't need to do anything. Take you time, yes, but...

The truth is that no one case is alike. When it comes to recommendations, talk to your doctors, gather multiple opinions, use a forum like this one for information on personal experiences ONLY. And remember, most here are very new or the problematic cases...

Learn from each other, but decide on your own... You are the one that has to live with your decisions...

Tony
Posted 2/15/2010 6:22 PM (GMT 0)

I agree with James' comments...a little knowledge is a dangerous thing and many of us (myself included) are guilty from time to time of not choosing our words carefully when making recommendations.

Having said that, Tony, with all due respect, I think you and I must not be reading postings from the same forum.  You say that, ..."85% of new guys are told that they don't need to do anything."  Over the  1 1/2 years that I have been here I think that probably the most common advice to new guys has been to "get it out quickly".  Only in recent months have posters advised a more cautious approach including advising men to at least consider AS if they meet the guidelines.  I think this is a healthy change for this site and I see a lot more balance than existed in the past.

Tudpock

Posted 2/15/2010 6:29 PM (GMT 0)
Me thinks Tony meant to say 85% of the guys are told to take their time. And in this context - take your time means you've got at least six months if not longer before you cut/snip/radiate etc...

Posted 2/15/2010 6:31 PM (GMT 0)
We are not reading the same forum, Tud.

Most guys are told to take their time deciding what to do and it dates back to when I arrived here in 2006. I was told that as well. That stated, I need to revise my statement to reference the lower risk cases. I think most of the G7 and higher cases know that AS is not a good option for most.

And I did not say that guys are told 85% of the time that they don't need to do anything. I said that 85% of the guys are told that, even if by only one member. I know of at least a couple posters who says that to most cases here.

Tony
Posted 2/15/2010 6:32 PM (GMT 0)

Excellent recommendations, James and Tony.  Another reason why this forum is one of the best health forums on the Internet.  We are all lucky to have such outstanding moderators who keep the forum on track. 

It has been four years since I was diagnosed with prostate cancer.  I did not find this forum until after my surgery, but it has been a godsend since, especially in the first year of recovery.

I wish each of  you the very best outcome on your own prostate cancer treatment.  Each of us is different but we share a common disease that draws us all together.

Posted 2/15/2010 6:41 PM (GMT 0)
Thanks Steve and Tim,
Steve you are correct. Being told to take your time is a recommendation should follow. I do not recall a wave of "hurry up" advice anytime at this site. I date it back to when I got here.

Back to James C's point. We are all experts here with our own cases. That's it.

It would be best to welcome new members and try to be helpful and supportive...No matter what they decide to do about their disease.

Tony
Posted 2/15/2010 6:51 PM (GMT 0)
Then I would hope the moderators would addresss the "couple of posters" directly about this situation, instead of being generic. I for one, have always said that people here should be compliant to their medical team. We are not doctors, nor remotely qualified to give medical advice in lieu of a real doctor.

Tud is right, there has been a change in focus, especially the past 6-9 months, for the good. Where AS can be talked about as being viable for some, not just a side note. And its good to see people being told to get at least a second opinion from a radiation oncologist, as opposed to listening only to their initial urologist ,who usually is a surgeon too.

As far as rushing, not bad advice for most people to realize that they don't have to be pressured into making a primary treatment decision with a couple of weeks of a dx via biopsy.

As far as any dx of a Gleason 7 or above, I personally feel its dangerous to sit around and waste months of studying, comparing, gathering mutiple opinions, etc. Gleason 7's, particually the 4+3 combination has the potential to be unpredictable and agressive.

AS - that's a serious committment, and the criteria is narrow as far as I am concerned, and it would take a real responsible patient and doctor together to follow that safely.

Sometimes our opinions just happen to be fact, but often an opinion is but an opinion.

David in SC
Posted 2/15/2010 6:53 PM (GMT 0)
Recently I've noticed there has been a rise of those who undergo radical surgery 6-8 weeks after dx. Personally I think more should be told to wait longer. I think one needs added perspective before a possible life altering decision. a few weeks after dx IMHO is too soon. Most guys are still in the initial shock of their dx. Like I also tell everyone or I use to is after a few weeks after dx take a week off and go somewhere or do something to best get your mind of PCa. Then later after you decide on an option and if it's a radical procedure take a few days off to reflect on it. Then when sure make the appointment for the treatment without looking back. That would avoid the tragic architectman ordeal.
Posted 2/15/2010 7:04 PM (GMT 0)

TC-LasVegas said...
We are not reading the same forum, Tud.

Most guys are told to take their time deciding what to do and it dates back to when I arrived here in 2006. I was told that as well. That stated, I need to revise my statement to reference the lower risk cases. I think most of the G7 and higher cases know that AS is not a good option for most.

And I did not say that guys are told 85% of the time that they don't need to do anything. I said that 85% of the guys are told that, even if by only one member. I know of at least a couple posters who says that to most cases here.

Tony

I think what Tud is saying is correct in a way. There wasn't much direct advice to get it out asap. It was always I had to get it out of me asap which while not direct is implied. Also when many new guys with a gleason 6 who are panicking at the mention of the word cancer, that really falls into them making a snap decision more than you have time to learn and educate yourself. We have to remind ourselves occasionally where a new guy here head's at. We've all been there but over time some forget.
Posted 2/15/2010 7:17 PM (GMT 0)
good advice for all, realziggy. I think that most of the guys here who do come to us either while being tested or just after diagnosis have a much better picture painted by the guys here, as opposed to those who come after treatment. I'm speaking in generalities , of course, but coming here does at least let new guys have a chance to read and reflect and maybe slow down a little before deciding what they want to do.

This site does follow national statistics, in that the majority of PCa diagnosis is treated with surgery, so there will always be a majority of surgical guys here at this site, just as it will be with any national statistics, until new and different methods of treating PCa is widely available and accepted by the general population. Even we surgical guys who think about it realize that ours wasn't the only way to go, in most cases, and like to understand how others went their ways. In my case, I wasn't eligible for Seeding, nor for some of the other newer methods available, due to gland size, so I was actually reduced to just one option. But I often wonder--what if..............? turn
Posted 2/15/2010 7:29 PM (GMT 0)
I don't argue that point Ziggy,
You are right. I think in the context of Gold Horses recent post was that most feel the darkest days early in their diagnosis. Some just want out of that feeling as quick as possible. For those guys, they will likely act quicker than most. It does make for a hasty decision that they may or may not regret, but it does not mean they made a bad one.

David,
Moderating for two years has taught me a lesson about calling guys out. If I can avoid it I will. Calling anyone out by name on the forum is not necessary to get a point across. I prefer a generic announcement like this one. I am tired of hurting anybody's feelings and I will moderate when somebody does to the best of my ability to keep the peace here...

Tony
Posted 2/15/2010 7:35 PM (GMT 0)
Tony, I didn't say exactly what I was thinking. I meant to speak to any individuals privately, by e-mail or even phone if available, didn't mean in open forum mode, sorry.

James - I agree with you too. I have learned much in my time here, even though much of has been since my primary treatment choice.
In reality, like you, despite knowing about all the choices now and knowing a lot more about what they mean, my numbers and velocity narrowed me right down to surgery (regardless of my own desire to have seeding originally), and in my case, was further narrowed to open surgery only (didnt know that up front, but my deep/narrow prostate bed would have excluded me from robotic). So in the end, I know in my heart, didn't have any real choice but the path I started on.

However, when I see new friends in here, fresh with a dx, and in particular, those with extremely low grade cancer on the surface (based on numbers they are providing), I just hate to see anyone slam bammed into a primary treatment without the luxury of knowing all their options clearly.

David in SC
Posted 2/15/2010 7:39 PM (GMT 0)

In my relatively short time here, I haven't found the posts weighted at all to "get it out."

Let's not forget that something like 30% of biopsies UNDERESTIMATE the PCa!

I was told by my first urologist (have since changed), after biopsy of T1c and G6 that "if you were going on a year-long world cruise, I'd say let's take care of this when you get back." That's not me. I crammed for 3 wks, made my decision and had a RALP a month later. Lo and behold my path report said T2c, G7 (3+4) and tumor close enough to SV to warrant 2nd opinion (though thankfully uninvaded).

I understand/accept that everyone's different, AS is appropriate for some, and making a decision based on fear alone is not a good thing. On the other hand, my experience tells me that it can't be a bad thing to accelerate the learning process and make an informed treatment decision asap, even if that decision turns out to be watchful waiting.

Ralph 

Posted 2/15/2010 8:07 PM (GMT 0)
I'd like to see more prostate sizes (estimated or actual) listed with stats. Size, biopsy core%, velocity, location, Gleason score; these all have meaning during diagnosis/treatment. Suggesting a man with a 26 gm prostate wait to treat a Gleason 3+3 for example, is not even close to the same as suggesting a man with a 42 gm prostate wait for treatment. They could have 2 very different outcomes.

Me tries to keep my opinions about who should do what to myself....albeit, I am not always successful :>)

Swim
Posted 2/15/2010 8:28 PM (GMT 0)
(I still remember the shock when my mother's neighbour was diagnosed with lung cancer after having some chest and back pain and then died from it within two weeks. I have never heard of anything like that with PCa)

With PCa the time factor is simply not the same as other cancers as far as I can tell, but you do have to make a decision some time.

When I was first diagnosed I was not told that I didn't need to do anything I was calmly told that I didn't need to do anything in a hurry. And that I had four or five weeks to make my mind up not four or five minutes hours or days.
And the time frame also suggested that even if I made a decison at four weeks the resulting action would not be taken for three to four months.

I also posted on another thread here recently that HW guys are not the medical experts, but they are experts in giving support.

Alfred
Posted 2/15/2010 8:53 PM (GMT 0)

swimom said...
I'd like to see more prostate sizes (estimated or actual) listed with stats. Size, biopsy core%, velocity, location, Gleason score; these all have meaning during diagnosis/treatment. Suggesting a man with a 26 gm prostate wait to treat a Gleason 3+3 for example, is not even close to the same as suggesting a man with a 42 gm prostate wait for treatment. They could have 2 very different outcomes.

Me tries to keep my opinions about who should do what to myself....albeit, I am not always successful :>)

Swim

You're not up to date with avodart/proscar. My doctor and others are now routinely prescribing those drugs pretreatment to reduce the size of the prostate. I even used it prior to my 3d Satiuration biopsy to reduce the amount of needles to only 45. It shrunk about 10 grams in size. Even agiant prostate can shrink quite a bit in a few months which I know by talking to others in the waiting room and from the university doctors.
Posted 2/16/2010 5:03 AM (GMT 0)
Guess I wasn't referring to those taking adovart but, you're right. It's another consideration to think about.

Swim
Posted 2/16/2010 1:24 PM (GMT 0)
Hay guys i'm anew member. and i am glad i found it i wish i had found it years ago i think no matter what your stats are it boils down to your own desison. on what course to take, on saying that this forum is the greatest thing i have found it makes me feel like i not fighting this alone because somebody here has experince it or knows something about what your going thru
hope i not out of place

Deerunter
Posted 2/16/2010 10:46 PM (GMT 0)
ummm Jim, I wasn't thinking of playing doctor...but now that you mention it... Darn, why does my wife hide every time I get that glint in my eye...sigh...I'll have to put away the doctor's costume till the weekend.

Sorry...I couldn't resist.
Paul
Posted 2/17/2010 7:25 PM (GMT 0)
I was lucky to find this site before I made my decision. While I probably would have ended up in the same place without visiting here, the frank, candid discussions by many posters helped educate me and make me very comfortable with my direction. At no time did I feel like the site was "slanted" in any particular direction or that anyone was trying to steer me. I have recommemed it to any number of men since my DX. Kudos to James and TC-Las Vegas for monitoring the quality of this resource! 
Posted 2/17/2010 10:22 PM (GMT 0)
James
Thanks for raising the issue. I, of course, have never been guilty of playing doctor. But I will be more mindful in the future of the fine line between being reassuring and being diagnostic.
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