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NYT essay: “’Cancer’ or ‘Weird Cells’: Which Sounds Deadlier?”

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Posted 11/28/2011 3:54 PM (GMT 0)
142, thanks for the update...I didn't know those steps were being taken (for smokers). I believe that "ignorance taxes" such as you described will generally change behaviors. It will take a little time...but complicated public health issues generally move expectedly slow.

I agree that we should get this thread back on the original topic about the growing call in the medical communities to change "low risk" or "very low risk" prostate cancer to a more appropriate name so that the frequent leap to an immediate, aggressive, life-altering, but typically unnecessary treatment gets dramatically reduced.  I can't think of any advocate group more than the veterans at HW who should be stronger in educating men about what the medical community has learned—that the old adage "cancer is cancer" is a naive relic of the past, in particular when it comes to "low risk" and "very low risk" PC.

The main drawback of the well-documented increase in prostate cancer detection resulting from widespread PSA screening is the overtreatment of indolent disease.

Posted 11/30/2011 7:50 PM (GMT 0)
In the previous post of this thread, I mentioned “… the growing call in the medical communities to change "low risk" or "very low risk" prostate cancer to a more appropriate name … ” There is a growing list of the medical specialists, particularly those who are focused on prostate cancer expertise, who are adding their voices to the call (the article links in the first posting of this thread included many), but there is also a growing number of PC patient advocacy groups who are speaking up about the fact that the old adage “all cancer is cancer” is obsolete in today’s knowledge. Earlier this week, on one of the Prostate Cancer International web sites, this comment was made: “We also believe that it may be helpful to find a new form of nomenclature for early forms of prostatic neoplasia that are of questionable clinical significance at the time of initial identification so that we can stop referring to these neoplasia as “cancer” when they may very well not be cancerous.” The PC-savvy laypersons/veterans of HW/PC continuously reiterate the mantra to our newcomers to “educate themselves” about the in’s & out’s of PC.   We need to also evaluate our own perspectives and keep-up with the maturing thought & best-practices in medicine.   Some cases of what was once thought of as cancer is no longer thought of as cancer, and this isn’t the first time in history that this knowledge growth has happened (previously referenced by JohnT).     Times change (thankfully), and as the saying goes, “this is not your grandfather’s PC.”
Posted 11/30/2011 8:19 PM (GMT 0)
Let's see. If low grade prostate cancer is not cancer anymore; if most men diagnosed these days have low grade cancer then, just like that, PCa mortality should drop fast. There, this has to be a good thing...

RalphV
Posted 11/30/2011 8:24 PM (GMT 0)

ralfinaz said...
Let's see. If low grade prostate cancer is not cancer anymore; if most men diagnosed these days have low grade cancer then, just like that, PCa mortality should drop fast. There, this has to be a good thing...

RalphV

Good question...but the math won't work out that way.

A significant portion of men today diagnosed with PC do indeed have cases which are "low risk" or "very low risk" (perhaps in the 30% range)...but an extraordinarily low number of men with "low risk" or "very low risk"  PC will eventually die of PC (so essentially no impact on PC-mortality).

What will drop is the number diagnosed with PC.

added later as an edit...

And what will also likely drop is the number of men overtreated.

Post Edited (Casey59) : 11/30/2011 1:34:03 PM (GMT-7)

Posted 11/30/2011 8:34 PM (GMT 0)
Ah, I understand the math now. Guess that if the USPSTF gets away with their recommendation more of those low grade non-cancers will be something else in time. Maybe "peculiar indolent cells"... Sounds better than cancer.

RalphV
Posted 11/30/2011 8:38 PM (GMT 0)
I think this such a terrible ideal, this nonsense of re-naming cancer something else. Diagnosis isn't the problem, overtreatment perhaps. Just a mind game, and will not serve the cancer community well at all, either patients or doctors. So what's the real motivation here, Casey?

david in sc
Posted 11/30/2011 8:44 PM (GMT 0)

ralfinaz said...
Ah, I understand the math now. Guess that if the USPSTF gets away with their recommendation more of those low grade non-cancers will be something else in time. Maybe "peculiar indolent cells"... Sounds better than cancer.

RalphV

I've read the complete USPSTF recommendation online.  I have not seen any reference by the USPSTF to the notion of changing the name of "low risk" or very low risk" PC to something won't ignite an unnecessary relfex of "cancer hysteria;" I don't believe that this was within the scope of their mission.  The "cancer hysteria" (by the way) was a perfectly understandable fear—historically—when most cancers were diagnosed in advanced stages. 

I'm assuming the last comment was merely a backhanded swipe at the USPSTF, which has been a topic of other recent threads.

Posted 11/30/2011 8:50 PM (GMT 0)
Cancer - n. a malignant tumor; any evil that grows and spreads.

(New American Webster Dictionary)

Let's see, yeah, I'm still working with the definition I've always had in mind. And I disagree completely with trying to call cancer something else. 

I've said it before is a more abrupt way, and got called out for it, so I'll say it in this more gentle way. 

Although I do agree that a lot of money is spent on treatment, not all of which may be justified, I do not believe that telling someone they are not really sick when they are is going to improve their lives.

Posted 11/30/2011 9:42 PM (GMT 0)
The intent of the USPSTF is clear. They want to reduce the use of the PSA test in diagnosing prostate cancer as early as possible to prevent over treatment and the known harms of treatment. The movement to classify low grade prostate cancer as "weird cells" is driven by the same crowd with the same objective. Isn't there an association?

First they recommended no need to test men with PSA after age 75. Now they recommend to not test asymptomatic men. In the future do not scare men and women with the word cancer? Seems like a logical sequence. After all, prostate cancer treatments do not save lives and do more harm than good. That has been said time and time again...even if not true, it sets in.

RalphV
Posted 11/30/2011 10:55 PM (GMT 0)
Ralf,

We all know how that goes, if you tell the same lie/half truth enough times, eventually many will believe it.

david
Posted 11/30/2011 11:12 PM (GMT 0)

ralfinaz said...
The intent of the USPSTF is clear. They want to...   The movement to classify low grade prostate cancer as "weird cells" is driven by the same crowd with the same objective.

No, I don't believe this is correct. 

On the one hand, the USPSTF is a group of influential physicians, nurses, health psychologists, epidemiologists and statisticians with recognized expertise in primary care, preventive and evidence-based medicine.

On the other hand, those among the growing numbers calling for renaming "low risk" or "very low risk" prostate cancer are a more "ad hoc" group of physicians who specialize in the treatment of PC, and also certain PC advocacy groups.

 

It was my suggestion here that HW/PC members join in with other advocacy groups.  I wrote,

...about the growing call in the medical communities to change "low risk" or "very low risk" prostate cancer to a more appropriate name so that the frequent leap to an immediate, aggressive, life-altering, but typically unnecessary treatment gets dramatically reduced.  I can't think of any advocate group more than the veterans at HW who should be stronger in educating men about what the medical community has learned—that the old adage "cancer is cancer" is a naive relic of the past, in particular when it comes to "low risk" and "very low risk" PC.

Posted 12/1/2011 4:08 AM (GMT 0)
Casey,
Wish you luck in recruiting your army of advocates that support such notion. I think that changing the name of cancer to another word to avoid treatment is a condescending way to tell those diagnosed with “low risk” cancers that your perception of the situation is correct and they are not. Count me out although I am not a veteran at HW.

In reference to the USPSTF members, none has published anything of significance about prostate cancer. Nothing, Zilch, Zero, Nada...None of them treat or are experts on PCa except Dr.Timothy Wilt an internist who is well know as one that has been and written against PSA screening for years. He is with the VA and has managed to reduce the use of PSA testing in the VA system.

You might think that there is no association between those that want to name low grade prostate cancer with a name like “weird cells” as a way to avoid over treatment and those that see no benefit in PSA testing, but there is. Wilt, Brawley, Barry, Woloshin, Welsh and a few others have been at it for years and know each other well.

RalphV
Posted 12/1/2011 5:06 AM (GMT 0)
Even though you refuse to answer my comments Casey, ralf is dead on in his last answer. It's very demeaning and condenscending the way that you judge others with remarks like "naive, etc" when others don't agree with you.

Calling an apple a "splum" or anything else doesn't change it from being an apple. Even in the lowest grade and most indolent (on the surface) Gleason 6, its still comprised of Type 3 cancer cells, and they are cancer cells, and any "mind games" isn't going to change that fact. And I asked you before, but you never replied, who are you trying to fool? And what is your (or their's) motivation for doing that.

Just because the veterens at HW don't agree with your thinking, doesn't' make anyone any less in their knowledge on the subject, wish you would think about that sometimes.

David in SC
Posted 12/1/2011 9:33 AM (GMT 0)
I will also go on record and disagree completely with trying to call cancer something else.  My husband was diagnosed G6, but it turned out to be G7.  There was no rush to do surgery.  There is the required 8 weeks to heal from the biopsies.  Time to research and meet with urologist(s) and other specialists.  Then it was another 8 weeks until the daVinci surgery was done.   Changing the name isn't the answer, IMO.
Posted 12/1/2011 10:23 AM (GMT 0)

This is something I have given thought to .... what I consider the over use of the word 'cancer' ... I speak as a person who is living with stage IV prostate cancer ... advanced, metastasized, hormonal resistant, etc ... the key word to me is 'clinical significance' ... doctors I believe by the nature of their job are compelled to tell the patient everything, even if the situation has no immediate clinical significance. In other words is not symptomatic ... I believe that early stage prostate cancer is over treated ... and that any treatment that is opted for does not change anything ... I believe that in early stage (stage 1 and 2) the best option is surveillance, or watchful waiting ... perhaps get a shot of Lupron once in awhile (that will defiantly bring the PSA down to close to zero) and go for a check up once in a while. Perhaps get a bone scan to see if there are any 'uptakes/hot spots' ... but, without any symptoms the clinical significance is minimal.

Posted 12/1/2011 12:31 PM (GMT 0)
treatment doesn't change anything, don't call it cancer... what wonderful messages for those that might read this stuff a day or so after finding out they have cancer. Luckily it won't take a cancer patient long at all to learn what rubbish this is.
Posted 12/1/2011 2:30 PM (GMT 0)
This thread has affected me to the point that I no longer post much on HW.

I think Aimzee said it very well. Gleason 6 may well turn out to be Gleason 7 or worse. We've seen that here on HW many times.

The best our doctors can tell us is that the cancer "seems" to be an indolent variety: that they "think" it is organ contained; that it is "unlikely" to threaten our health for many years; that they will "monitor" it as best they can. But I doubt they'll be handing out any written guarantees on any of those points.

The USPSTF can tell the world that PSA screening is a bad thing and that it results in a whole lot of overtreatment of this annoying disease we've all agonized over, but I doubt if any of the USPSTF members will be there to comfort the man and his wife when he presents with advanced or metastatic prostate cancer because he was never screened via a PSA test and did not know something was amiss in his prostate.

It really irritates me when we high-handedly suggest that people are causing their own cancers because they prefer to eat a normal American diet. Some studies may "suggest" that certain eating habit "may" be tied to the development of certain cancers, but when we elevate these possibilities to the reallm of dogma, we sound like the spandex-clad addicted runner who looks down on those who don't share his enthusiasm for the sport and who considers the bulk of humanity to be fat, lazy, and deserving of whatever fate throws at them.

I love this site when we offer comfort and encouragement to those who are newly diagnosed or who need someone to lean on as they struggle with their illness. I'm completely discouraged when we trivialize this cancer or tell people who refuse to sign on to our chosen lifestyle that they "don't get it."
Posted 12/1/2011 3:10 PM (GMT 0)
Clock, that was such a wonderfully written post, and hit the nail on the head with the hammer. You took my rougher thoughts and sentiments and tied it together. I only hope the original poster takes heed, and lets the combined words on multiple like opinons on this thread sink in.

HW has always been firstly, and foremost, a support site. This is no place for anyone to be dogmatic in their views and critical of those that choose different paths and lifestyles. Time to come back to the basics of Peter's vision for his site.

I feel tht many of those condenscending remarks to be Rule 4 violations in my opinion, even when the poster is attempting to be clever in disguising them.

david in sc
Posted 12/1/2011 3:27 PM (GMT 0)
I guess a decade plus ago, when Gleason-5 was considered “cancer”, the same “cancer-is-cancer-and-always-will-be-cancer-no-matter-what-you-say” argument also existed among some.   Thank goodness that good judgment prevailed, or is there still lingering remnants of discontent about that change?   Was it condescending at the time (just after the last definition change) to tell newly-biopsied G5 men that what they have been found to have used to be called cancer, but is so clinically insignificant that it is now only recognized as a possible pre-cursor to prostate cancer?   I think not.   The message will be the same now.   It’s a wake-up call to make lifestyle changes.   “Lifestyle choices are the best course of action in preventing prostate cancer," or so says our beloved Dr David Spamadi.   The USPSTF recommendation against mass screenings (but not against individual PSA screening decisions made through the doctor/patient discussions) belongs on another thread, since linkages are merely loose inferences…unless there is a clearer connection of a vast conspiracy which someone is still withholding.
Posted 12/1/2011 4:35 PM (GMT 0)
Casey,
Where do you get the notion that Gleason Score 5 is not cancer?
Here is an excerpt from the ISUP consensus expert panel dealing with this issue:

“Gleason Scores 3–4
These low-grade tumor scores were assigned by
members of the consensus panel occasionally on transurethral
resection specimens (TURPs) and in multifocal low-grade
tumors within radical prostatectomy specimens (Fig. 2). In
contrast to Gleason’s diagram and text, the consensus was that
cribriform patterns are not allowed within Gleason pattern 2. A
controversial area is whether a diagnosis of Gleason score 3 or
4 should be made on needle biopsy. Reasons why such a
diagnosis is usually inaccurate are: 1) poor reproducibility
even among experts; 2)poor correlation with prostatectomy
grade with almost all cases showing higher grade at resection;
and 3) a diagnosis of Gleason score 3 to 4 may misguide
clinicians and patients into believing that the patient has an
indolent tumor.11,34 It was the consensus of the group that,
rather than stating categorically that a Gleason score 4 on
needle biopsy should ‘‘never’’ be made, this diagnosis should
be made ‘‘rarely, if ever.’’ Whereas recommending that the
diagnosis of Gleason score 4 on needle biopsy should be made
‘‘rarely, if ever’’ is similar to ‘‘never,’’ it does allow for the
exceedingly rare case where low-grade cancer has been
sampled on needle biopsy. The consensus conference cautioned
that, although the potential exists for rendering a
diagnosis of Gleason score 4 on needle biopsy, it is a diagnosis
that general pathologists should almost never make without
consultation. Even when the exceedingly rare Gleason score 4
cancer is diagnosed on needle biopsy by an expert, a note
should be added that almost always a higher grade cancer will
be seen in the corresponding prostate (if examined at radical
prostatectomy). The major limitation of rendering a diagnosis
of Gleason score 4 on needle biopsy is that one cannot see the
entire edge of the lesion to determine if it is completely circumscribed.
Consequently, most of the lesions that appear to
be very low grade on needle biopsies are diagnosed by
urologic pathologists as Gleason score 2 + 3 = 5 or 3 + 2 = 5
(Fig. 3). Some participants stated that if the location of the
needle biopsy were from the transition zone or possibly at the
apex, where many lower-grade cancers are found, that might
factor into diagnosing the rare Gleason score 4 on needle
biopsy.”

Source:
1: Epstein JI, Allsbrook WC Jr, Amin MB, Egevad LL; ISUP Grading Committee. The
2005 International Society of Urological Pathology (ISUP) Consensus Conference on Gleason Grading of Prostatic Carcinoma. Am J Surg Pathol. 2005 Sep;29(9):1228-42.
Review. PubMed PMID: 16096414.

On the second issue you continue to misinterpret the USPSTF recommendations. They simply recommend not testing asymptomatic men. That means many cancers will be missed until they produce symptoms. These issues are closely related and belong on this thread because their objective is to avoid over diagnosis and over treatment. This is the wrong way to do it...

RalphV
Posted 12/2/2011 1:53 AM (GMT 0)
Other than frequent urination, especially in the morning, I was without symptoms. I'm adopted and not knowing my family history started having full physicals in my early 30's. Everything was fine until last year my GP said my prostate felt lumpy. I had no reference point for this statement, asked him what he meant, he was not all that forthcoming, and said lets just get a PSA... What's that? Had no clue.

Everything was "normal this year, but he put in for a follow up PSA. Came back a point higher, referred me to a urologist who scared the bejeezus out of me with cancer talk. Found Hopkins.

All I know is, I live pretty healthy. I watch what I eat, don't smoke, I'm a moderate social drinker, and I feel like I'm a lot more healthy than the majority of people I see around me. I've got a good motor.

If not for the PSA and my GP, I would have gone on peeing my brains out every morning thinking it was BPH or something insignificant. I had an open rad at Hopkins with pre and post path matching at G6, with the post saying organ confined, no pos margins, no lymph or sem vesicle involvement. The PSA, postentially saved my life.

I'm 42, soon to be father of three under the age of 5. My whole life in front of me, thank God. To those who think this thing WE deal with is over-treated, I say, Bupkis! Conquer it by all means necessary.

Casey, you're naive to think diet will beat or slow it all by itself. Respectfully. I feel good about my chances, but I'd feel a lot better if it were out of me at a G4 or G5... Just saying.

Post Edited (dude1969) : 12/1/2011 6:56:36 PM (GMT-7)

Posted 12/2/2011 2:10 AM (GMT 0)
dude - good luck to you in your journey, you make a good testimony for screening and treatment, you have a lot to live for, I sincerely hope you got the beast known as PC gone or controlled for life.

david in sc
Posted 12/2/2011 2:03 PM (GMT 0)
David,

Thanks. I sure do have a lot to hang around for!

My Dr at Hopkins said specifically, "The PSA protocol was implemented for YOU--- or at least you and guys your age. There is no reason to believe that this won't simply be a bump in the road for you and that you won't go on to live another 50 years." That was the first time I met him. Instilled a great deal of confidence in me. He happens to be only a few years older than me with 3 kids of his own. The fact that he works in one of the foremost centers for treatment of this dastardly thing we're all forced into dealing with, makes me confident that he's not just blowing smoke up my tail-end when he talks this way. But the point here is there should be no lower limit on referral to the test as it is, in the hands of professionals, a tool that gets the wheels rolling. I asked if there was any reason for my PSA to be 3.7... he said because you probably have cancer. I said what about prostatitis... there's no indication of that and your prostate is normal sized but you do have a small lump on the left side. 3 months later it was being removed.

Had I been referred to a urologist a year ago after the "lumpy" comment from my GP and I'd have been told everything then that I was this past year, I would have had the G4 or G5 or G6 prostate taken out then. From what I see around here, the earlier it's dealt with, the better the long-term prognosis. So saying that it's overtreated is, respectfully, particularly from a "young" guy's perspective, ridiculous. Personally, given what the test can point to, I would say it should be a mandatory part of male blood work with yearly physicals.
Posted 12/2/2011 2:14 PM (GMT 0)
dude,

to the vast majority of we men here at HW PC, you are preaching to the choir. I started getting yearly physicals at age 50, just because. the PSA test was just one tiny thing on a long check list. i never had urinary issues or problems, never an infection, all my DREs were negative, no enlarged prostate, etc. from age 50 on, my yearly PSA kept climbing and climbing, and in the last 3 years prior to dx, it was doubling and even tripling. it took 3 biopsies spread over 18 months, but that cancer was there. and if i had waited another year for the 3rd biopsy, there's no telling how dangerous a situation i would have been in at diagnosis. i was 56 at dx, and my uro said i was one of his youngest PC patients, so i can really feel for you young guys. had i been tested before age 50, my cancer could have been detected earlier, treated earlier, and probably could have been stoppable. as it is, i have used up all curative possibilty of stopping the cancer.

your story still makes an important point on the whole thrust of this mis-guided thread. discouraging PSA testing, whether it be at the standard age of 50, or earlier, is plain dangerous in my opinion (after all, it's just a simple, inexpensive blood test) and trying to convince others to re-name cancer cells to something else, is just plain foolish.

david in sc

p.s. i got 3 adult age children, 2 grand children, and a beautiful wife i am fighting to live for, so i understand
Posted 12/2/2011 5:40 PM (GMT 0)
David,

I know I'm preaching to the choir... :-)

And I could agree with you more that renaming something so as not to "scare" people, is foolish. The facts will set you free. ;)

dude
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