Addressing "the 'C' word" for low-risk PC

The USPSTF has recently stated its recommendation against mass PSA screening (although it remains supportive of PSA testing for individuals after an informed decision, and supportive of PSA testing for diagnostic purposes).   Newly diagnosed patients are now faced with radically polarized views about the logic of routine testing; however, other than a small number of outliers, there is universal agreement from both perspectives on these points: (i)             A diagnosis of “cancer” often results, at least initially, in a “hysteria” that is a perfectly understandable reflexive fear.   Historically, a diagnosis of “a cancer” was a death sentence.   For some cancers this fear is indeed warranted, but for most men with favorable-risk PC the situation is very different. (ii)            The widely shared preconception of cancer as a death sentence often leads the PC patient to make a quick and early decision for treatment, regardless of the risks and benefits.   The estimates of overtreatment of indolent PC vary based on definition, but nobody seems to be arguing the data findings that 48 must be aggressively treated to save one life from PC.  Overtreatment is a problem.   It has been suggested by some PC specialists that the word “cancer” may be part of the problem.   As an illustrative example, Dr Christopher Logothetis, lead prostate cancer research program physician at MD Anderson, said, “ One of the problems with PC is definition.   They label it as a cancer, and they force us [those physicians treating PC] all to behave in a way that introduces us to a cascade of events that sends us to a very morbid therapy.   It’s sort of like once that cancer label is put on there we are obligated to behave in a certain way, and its driven by physician beliefs and patient beliefs and frequently they don’t have anything to do with reality."   Following on the heels the USPSTF recommendation, perhaps now is the time to consider what several leading PC specialists have recommend…in the words of Dr Jon Oppenheimer (pathologist specializing in PC), “ Let’s call the low-grade tumors something other than ‘cancer.’ ”   Oppenheimer has recommended the less threatening term “ prostatic tubular neogenesis ” for cases with no clear evidence of Gleason pattern 4, or if more than 2 cores are involved, or if total lesion length is more than 3mm.   The notion is that if people hear this from their doctors rather than the dreaded “C-word”, they will be able to take a step back and think about more gentle treatments for PC that might work for them. Other PC specialists have recommended a similar approach, and this topic has been previously discussed here at HW.   Six months ago, another thread was posted here titled “ If the term ‘cancer’ weren’t part of the diagnosis, would more people consider AS? ”   In that thread, a nother proposed alternative term, the “ IDLE tumor ” ( I n D olent L esions of E pithelial origin) was proposed (by PC specialists) for consideration (check out the link to understand the proposed "IDLE tumor" proposal).   The same general topic is being re-visited here today because, a) from an informal assessment, more than half of current posters were not members of HW six months ago and likely have not seen that old thread, and b) the USPSTF recommendation may shed new light/new perspectives on the suggested nomenclature change.   Maybe new terminology offers a path forward…?   What do you think?   [ not about the USPSTF recommendation…but about the proposals to change the name of low-grade PC in order to help prevent overtreatment of PC]       edit:   typo Post Edited (Casey59) : 10/24/2011 2:43:54 PM (GMT-6)

 

clocknut said...
It's the urologists, the surgeons, the radiation oncologists, and others in the medical community...not the cancer patient... who need to stick to some sensible guidelines in deciding how and when to treat. 

Please re-read the MD Anderson prostate specialists' comments...   You have exactly struck the nail on the head of the key point that he makes.

 

 

 

[Sorry, I didn't see that recent case you referenced to see if he was indeed a possible well-qualified AS patient.  But keep in mind that AS is not necessarily a forever decision...if a case progresses, they may elect to move to treatment, and studies have shown that the outcomes are essentially the same.]

Re-naming cancer to something else is fooling whom? That's the worse idea I have ever heard of concerning cancer. Cancer is still cancer, whether it be indolent and ultimately harmless, or if it is terminal in scope. I don't like the games that are being played by the alledged powers to be in medical matters. Instead of this name game, why not restrict treatment to cases that need treating immediately, and using AS on lesser cases, in case matters are worse than they appear at first.

But as Clock mentioned, just here at HW, and I know it represents just a small grouping of me, as opposed to those dx. with PC nationwide, but I am pretty sure we are seeing typical cases coming through HW, we have had too many men whose supposed harmless low grade Gleason 6 cases get upgraded upon full pathology of a removed prostate. That is where the danger lies, because with our current "tools", a biopsy doesn't always tell the full picture.

But again, I don't want to see some academic game being played at the expense of patients, just calling it something else I think is a terrible idea and a major step in the wrong direction, just my personal opinion.

david in sc

Cancer is mearly a cluster of cells that behave differently than normal cells. There is such a variation between cancers and especially a lot of variation in PC from harmless to deadly. To call all a cancer is a diservice. A freckle or a mole is technically a type of cancer, but no one would cut off their arm because they had one.
about 10 years ago G5 was considered a cancer and men that had G5s were treated. Pathologists got together and decided not to report G5s as cancer anymore; so there is precedence to what Casey is proposing.
I think the word "cancer" is so ingrained in our belief system that it brings out fear and causes patients to act irrationally. We believe that cancer is dangerous and once a belief system is formed it cannot be easily changed, just think of religion and politics as a belief systems that cannot be swayed by any logic.
We have HGPIN that shows up in a lot of pathology and that is basically a cancer or a precurser to cancer, but men to not seek treatment for HGPIN. If we called this cancer I bet there would be a lot more treatments for HGPIN. Men with HGPIN are offered only AS and I haven't seen any complaints.
Surgeons like Peter Carrol at UCSF have tried to get low grade cancer's name changed for years and has gained some ground.
I strongly believe that we should change the name of truely low grade PC defined a G6, less than 30% cores positive, no core over 50% and psa density < 1.5, and PSADT > 3 years to something less onerous.
JohnT

Casey

To get right to your question - quote - [ about the proposals to change the name of low-grade PC in order to help prevent overtreatment of PC]

I'm not to sure about calling low grade PC anything else but what it is. BUT that does not mean the community cannot be clear that it is low grade and does not need treatment at the time.

Now I'll show how much I do not know;
How is low-grade PC determined? Is that by the PSA number or by a biopsy or by something else?

I think if the threshold for any treatment - to include a biopsy - can be established that should be the medical goal

Something like, we test every male periodically, if the PSA is below X than nothing is done other than make a note in medical records and let the guy know that it is something he should track periodically but it is nothing to worry about.
Is that too simplistic?

Bud

Casey, you just said:

" Nobody in their right mind would look at their G6 biopsy result and decide to cut, burn or poison themselves for the sole reason that they might be G7. There’s a pretty fair chance they might also be G5…you might be surprised how many follow-up biopsies are downgraded."

Now where did this come from? And what is your source for follow-up biopsies being downgraded to a G5? I have never heard of that happening before, do you have a particular example in mind?

Casey

I have been thinking about this for the last hour, while having a glass of red wine and a few dark chocolate covered pomegranates. I can definitly see the the merit to reclassify the name for low grade tumors that may never be something that requires medical procedures. The word 'cancer' surely does scare the s**t out of folks, I know it did me.

The findings you stated above where 48 must be aggressively treated to save one life from PC are especially disconcerting.

Bud

So, almost 3x as many men have Gleason upgrades as men have Gleason downgrades, and again, never heard of a single case of a Gleason 6 downgraded to a Gleason 5, most of the downgrades seem to be Gleason 7 downgraded to Gleason 6.

Purgatory said...
...never heard of a single case of a Gleason 6 downgraded to a Gleason 5, most of the downgrades seem to be Gleason 7 downgraded to Gleason 6.

no, it's both

In fact one of the other studies listed which was from the highly respected Sunnybrook (Toronto) facility looked only at low-risk AS candidates.  In this study, G6 results were downgraded on repeat biopsy as often as they were upgraded.  The very first sentence in that study's RESULTS section reads, "On the follow-up biopsy, Gleason score was unchanged in 20 patients (30%), upgraded in 19 (28%), and downgraded in 27 (40%). Twenty-one (31%) had no malignancy on the follow-up biopsy. "

 

Post Edited (Casey59) : 10/24/2011 9:27:37 PM (GMT-6)

(moderator hat off)

So, Casey, 89% of patients are as bad or worse than originally expected.

11% are better.

An 11% chance of being better than expected really does not give me any warm and fuzzies. Doesn't even make me feel anything.

Cancer is cancer. I have had three. none of them would have been made to magically fade into the abyss by a change in standards. One took about 3 square inches and .5 inches deep out of my back (listen to the kids scream and run in panic if I take my shirt off at the pool), one took a chunk of my colon (thankfully no one sees that, but it does put me often in the crapper line), and the last took my prostate, continence, and nerves (don't have to explain that here).

Cancer is cancer. Repeat that. If you forget how to pronounce the words, there are a few folks who could help you with that.

Basta.

(moderator hat back on)

142 said...
Cancer is cancer. 

Let me be more clear...not so much in some cases of low risk prostate cancer. 

As the very first posting in this thread said, "For some cancers this fear is indeed warranted, but for most men with favorable-risk PC the situation is very different."

 

Post Edited (Casey59) : 10/24/2011 9:42:32 PM (GMT-6)

Casey,

Personally, no mod hat on, I think you are wrong.

Period.

 

Casey,

When those brilliant intellectuals are smart enough to be able to guarantee my loved ones that their cancer is "indolent" and will not progress (or hasn't already progressed), then I guess they can call it something else if they choose to.  But haven't reached that day.  We're dealing with sophisticated hunches.  That may seem like a wise policy when you're dealing with human beings in the macro, but when it's your life or the life of your son, it's kind of a different story.

My son is 40 years old.  I want him to have an annual PSA.  And if the numbers go up, I want him to have a biopsy.  And if they find cancer, I want him to make a treatment decision based on the following priority.  First, preserve life; a distant second, preserve continence and sexual function.

It's not "overtreatment" if it's the treatment the patient wants and demands.