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Posted 8/1/2013 7:10 PM (GMT 0)
Casey,

You quoted a comment that included:

reasonable likelihood of lethal progression if left untreated

 

I have a problem with that injection of "lethal". Their words, not yours, of course, but that stinks to me. I have a very high risk of a hereditary cancer (all of my cousins on the same bloodline at a "certain age" have various stages of it).

The problem is not that it kills you, as it mostly occurs in the late 60s to mid 70s, and you have to live long enough to die from it (another 10+ years). The problem is that it leaves you blind early on in one or both eyes. I think that is a devastating enough effect of the disease to continue to call it cancer.

 

Something does not have to be "lethal" to effectively destroy your life.

 

Just my personal (non-mod) opinion.

Posted 8/1/2013 8:23 PM (GMT 0)

142 said...
Something does not have to be "lethal" to effectively destroy your life.

Ditto
Posted 8/1/2013 8:29 PM (GMT 0)
142,

 

Your posting addressed me, but didn't really have a question.  I assume you were asking for my comment. 

 

I agree which what I think your underlying premise is.  You are clearly talking about a type of cancer which is not prostate cancer.  You indicated that it could blind you, but cannot kill you.  That sounds extremely unusual, but I will take your word...and I would agree that this is (clearly) not within the scope of what the NCI is focused on w.r.t. removing the name "cancer."  Frankly, this doesn't seem close to what they (the NCI) are talking about...   With all due respect, for you to ask a question like that shows that there is clearly still a communications gap (or perhaps a "wall") which exists.  A good change management plan will include an effective communications plan—in this case, to two different target audiences:  doctors, and laypersons.

 

 

 

 

 

Posted 8/1/2013 9:20 PM (GMT 0)
142 said,
"Something does not have to be "lethal" to effectively destroy your life."

That is precisely why these recommendations are being made. You mention physical issues as being other issues a patient may encounter, but the mental issues of a diagnosis can be no less debilitating. The doctors, whom see way more patients than we do, feel that these naming conventions can help with the mental aspects of a prostate cancer diagnosis that are debilitating.

I think the big picture behind overdiagnosis, or a diagnosis of indolent disease being perfectly in line with your last sentence there.

Tony
Posted 8/1/2013 9:35 PM (GMT 0)
Tony +1
Dave/Purg +1
For the record--I have always supported Tony in his efforts although I disagreed with him on occasion. It hurt me when he left as a moderator. Purg and Jerry L have shared my beliefs on most issues..
Probably off topic! This discussion is excellent but I continue to be confused when less frequent screening is mentioned or to screen only those at "high risk"--ie., African American or those with a family history.. Tony mentioned in another thread that 250,000 men are going to be diagnosed this year and 30,000 are projected to die; his assumption or SWAG was that without screening 50,000 would die..With so many different guidelines along with the task force's "not recommended" I remain confused as to where we are at. I guess that I am too emotional and find it difficult to be swayed by so called "evidence"..When Tony meets with "experts" he might try to find out where we are at in this regards.
Sorry to side track, but I remain confused.
Bill skull
Posted 8/1/2013 11:05 PM (GMT 0)
Bill/Gun, thanks. I for one, and I know there are others here besides me that feel this way, will never let my eyes off the fact that still nearly 30,000 men a year, just here in the US, die every year of this terrible cancer. And many more will continue to die. I think the trouble, in my opinion, when you (generic you, not you Bill) get overly absorbed in stats, data, percentages, etc, its too easy to lose sight of what it is you are trying to help and protect.

Not to sound like a broken record, but I see our PC at the street level, at the patient level, one by one by one. That is what will always matter to me the most. I don't want any man to be in a position to be denied treatments one day because of changes in the system, I don't want to see men that should have been screened, denied or discouraged from screening, the very screening that could save their lives.

Having fought 4 bouts of a dangerous cancer in barely 14 years, yes, I may be a little sensitive on the subject, but will make no apology for my feelings. Been around too many people that died of cancer, sat at too many death bed scenes just as the last trace of life ebbed from the patient's eyes. I will always err on the side of patient, to me, that is where the humanity is in all of this. No one is just a nameless stat on a report, we are all human, and all deserve the same chance to live or to attempt to save ourselves. In my humble opinion only.

David
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