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

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Posted 11/22/2011 8:36 PM (GMT 0)
“The word ‘cancer’ is so powerful that it overwhelms any conversation,” is the comment in a NY Times essay published today.   We have absolutely seen this here, and many here have self-reported how they experienced it…see, for example, this very recent thread titled “ The Phone Call ” for examples.   [That thread also contains an excellent descript ion of “low risk” and “very low risk” PC cases.] In prostate cancer, many solidly “low risk” or “very low risk” men are rushed into what is almost certainly an unnecessary (or minimally, a premature) aggressive, often life-altering treatment…again, we see it almost every day here at HW.   The essay in today’s NY Times titled “’Cancer’ or ‘Weird Cells’:   Which Sounds Deadlier?” helps us to explore whether a change in terminology might help to avert the unnecessary PC over-treatments which are currently at (what many phrase as) epidemic levels. This topic has also been previously discussed here at HW in these threads: ·          April 2011 – “If the term “cancer” weren’t part of the diagnosis, would more people consider AS?” ·          October 2011 – “Addressing ‘the “C” word’ for low-risk PC” As the Oct-11 thread suggested, maybe now is the time to look closely at changing the name, and changing the overwhelming (mis-) preception...   So, which do you think sounds like a better way to characterize the "low risk" or "very low risk" prostate cancer cases:  "cancer", or "wierd cells"?           edit :   typo Post Edited (Casey59) : 11/22/2011 2:12:42 PM (GMT-7)
Posted 11/22/2011 9:52 PM (GMT 0)
Cancer will always be cancer, playing mental games with the name will never change that fact. I think calling it anything else than what it is, is deceptive and a diservice to patients everywhere. And who would be fooling whom in this idea?

david in sc
Posted 11/22/2011 11:43 PM (GMT 0)
"Even among the so-called “deadly” cancers — the ones like lung cancer and pancreatic cancer with 5-year survival rates of < 50 percent — we are now able to identify some ”weird cells” so early that some patients have pathologic findings that are given a different name. In the case of multiple myeloma, for example, there is a vast pool of people who are defined as having “monoclonal gammopathy of undetermined significance” (MGUS). A very small percentage of these (about 1 percent a year) do go on to have full-blown myeloma … but the vast majority don’t. They are monitored, and they are treated immediately if their condition progresses. However, these patients don’t have to live with the idea that they have a “cancer;” they aren’t clamoring to be treated; and their doctors aren’t clamoring to treat them"
New Prostate Cancer Info Link

There are many instances in which previously cells designated as cancer have had their designation of "cancer" changes to something less sinister as is the case with G5 and under prostate cancers.
Posted 11/23/2011 2:14 PM (GMT 0)
 

It is a fact of the human condition that words have power.  They create visceral, emotional reactions that cause many to immediately jump to a preterdermined conclusion.  Our socitey is rife with attempts to ameliorate the power of words, Taxes/Revenue enhancement, Retarded/learning disabled, abortion/choice, fat/overweight.

I don't think it's a question of fooling people so much as allowing people the chance to formulate an opinion/response without having to deal with the visceral reaction.  There is no question that the word cancer carries incredible power, certainly I had a moment of near panic when I first heard it.   Given that, I believe calling low or very low risk cancer something else would be beneficial.

Dave

Posted 11/23/2011 3:31 PM (GMT 0)

Purgatory said...
Cancer will always be cancer, playing mental games with the name will never change that fact. I think calling it anything else than what it is, is deceptive and a diservice to patients everywhere. And who would be fooling whom in this idea?

david in sc

I'd normally would agree with you Dave, but look at the massive over treating that is resulting. Maybe it should be called something else. The word cancer brings upon a state of panic and the desperate "get it out of me" cries from too many. We've witnessed that here from too many guys and the numbers remain fairly constant.

I don't go along with even if it just saves one life 48 other men shouldn't be treated and for many of them suffer lower quality of life side effects with no added longevity for most.

Ok now below we'll have those who have undergone recent surgery to protest what I am saying. It's usually those recently who have gone under the knife who are always the first and most strident to protest. That's only natural no one who is anywhere incontinent and probably impotent wants to hear maybe it was never necessary to experience. Like I've said another thing seen here through my years here.
Posted 11/23/2011 4:00 PM (GMT 0)
ziggy,

and I respectively disagree with your premise. Is there overtreatment for indolent cancer? Absolutely. Do lots of men go into a tizzy or flip out if they get any kind of cancer diagnosis? Absolutely. There needs to be better communication and explanation to these men when they are diagnosed. AS should be openly discussed and encouraged by the doctors to the patient, if immediate (or ever) treatment is required.

i have mentioned this several times on HW, for starters, if no treatment or AS is deemed the best course of action, that should be the end of it. This is a time where private health insurance companies and Medicare should have standards, that would simply deny those "off the cuff" immediate treatments that probably aren't needed. It could save 10s of millions of dollars, and prevent men from making treatment choices (which each have huge ramifications with complications and/or side effects).

not a perfect analogy, but if a man has a badly slashed/cut/crushed finger, you aren't going to find a surgeon to amputate the finger if other surgical approaches will save the finger. The imaginary patient in this case isn't going to convince the surgeon that he needs the finger cut off, no matter how scared or anxious he might be.

better education on the front end after diagnosis is the key to me. let the patient know the true situation, and if indolent, let them know the ultra low risk of progression of the cancer. At least if AS was put in place, if the cancer advances, then treatments could be done, nd justified.

but back to the original topic, calling a G6 anything else than cancer is deceptive and counterproductive in my opinion.

david in sc
Posted 11/23/2011 7:40 PM (GMT 0)
Something about this entire discussion really bothers me.  It seems we're saying that men are incapable of listening to reason and deciding whether or not they want to proceed with treatment (surgery or whatever) and that we must therefore protect them by invoking some sort of Orwellian euphemism and call their cancer something other than cancer.

I would argue that it's a man's right to decide if he wants to have surgery, even with a so-called indolent variety of cancer, when I've seen so many men on this site who are diagnosed G6 but who turn out to be G7 or have positive margins, EPE, or other complications.  Doctors may advise against surgery, and they should explain all the consequences in equisite detail, and they can explain the possible benefits of AS.  That's great.

But, we men seem to put up with a lot just because we're men.  When women are told that they don't have the right to choose a procedure, they stand up and say, "Go to the devil.  These are our bodies, and it's our decision," and the world supports them and admires them for being such advocates for women's health and women's rights.  Even when the procedure is purely elective, such as breast implants.

Being unable to have an erection is sometimes hard to live with, but surgery was my decision, my choice....and certainly a good choice in my particular instance.  This was made with input from my wife and my urologist, and I insist that it was my right to be told exactly what was wrong with me, to be given the available options, and to make the choice I made. 

If men are being "overtreated," I think the smart answer is education.  Once the man knows what he's up against, I say it's his body and his right to lobby for whatever treatment he's comfortable with, and I would never recommend sugarcoating a cancer diagnosis by finding some euphemism.  Maybe say that it seems to be "indolent" or "non-aggressive," but to hide the fact that it's a malignancy is a disservice to men, IMO.

Posted 11/23/2011 8:35 PM (GMT 0)
As John T points out, this has already been done for PCa. Cancers that were formerly diagnosed as G5 and below prostate cancer are no longer diagnosed as cancer at all. If the medical community determines that G6 cancers should be treated in that same manner, that is not deceptive at all. I know that the word cancer influenced my decision to have a RRP.

Post Edited (FrackMe) : 11/23/2011 1:38:59 PM (GMT-7)

Posted 11/23/2011 9:23 PM (GMT 0)

Purgatory said...
ziggy,

and I respectively disagree with your premise. Is there overtreatment for indolent cancer? Absolutely. Do lots of men go into a tizzy or flip out if they get any kind of cancer diagnosis? Absolutely. There needs to be better communication and explanation to these men when they are diagnosed. AS should be openly discussed and encouraged by the doctors to the patient, if immediate (or ever) treatment is required.

i have mentioned this several times on HW, for starters, if no treatment or AS is deemed the best course of action, that should be the end of it. This is a time where private health insurance companies and Medicare should have standards, that would simply deny those "off the cuff" immediate treatments that probably aren't needed. It could save 10s of millions of dollars, and prevent men from making treatment choices (which each have huge ramifications with complications and/or side effects).

not a perfect analogy, but if a man has a badly slashed/cut/crushed finger, you aren't going to find a surgeon to amputate the finger if other surgical approaches will save the finger. The imaginary patient in this case isn't going to convince the surgeon that he needs the finger cut off, no matter how scared or anxious he might be.

better education on the front end after diagnosis is the key to me. let the patient know the true situation, and if indolent, let them know the ultra low risk of progression of the cancer. At least if AS was put in place, if the cancer advances, then treatments could be done, nd justified.

but back to the original topic, calling a G6 anything else than cancer is deceptive and counterproductive in my opinion.

david in sc

In a perfect world you'd be right Dave and your remedy workable. But at this time the entire population has been taught the c word is nasty, a sure death sentence, many can't even say the word. It's every where in popular culture and the media. A character is diagnosed with cancer on any TV show and it comes with dramatic music, massive crying and a scene later wasted way in a hospital bald and dying. That or something similar flashes in all minds when dx. Even if we know better. If I had instead been told something else than cancer for my low risk case I would've undergone much less worry and anxiety. Not to mention I was given a 7 year death sentence for very low risk Pca as you know. It's only the fact I don't scary easy and I refuse to have anyone cut into me until I know w.t.f is going on. Only that saved me from a common 6 week mad rush to radical surgery, and a lower quality of life. Cancer has become such a dire word in our culture it's near impossible to rehabilitate it to just threatening status from where it is now.

"Cancer" now cue dramatic organ music, bring up sobbing loved ones in the background...and fade to black.
Posted 11/23/2011 9:29 PM (GMT 0)
Actually, Clocknut amply demonstrates the point that no amount of fact or logic is likely to change when he says, "...it's a man's right to decide if he wants to have surgery, even with a so-called indolent variety of cancer".

So, while I am sympathetic with the aims of those who suggest changing the name, I fear that this won't work unless there is some medical proclamation that says G6 is "not dangerous" or G6 is "indolent" or something like they did with G5.

Finally, I still agree with David (Purgatory's) proposal that Medicare and insurance companies refuse to pay for aggressive treatment for cancers with certain characteristics, e.g. G6 with low PSA and low cores/percentages.  It would also help to standardize the biopsy procedure to 16 cores to get a better chance of properly characterizing the cancer.  And...without getting into the US politics of a system with out of control costs, I suspect that our future will be more along these lines anyway and not just for PCa.

Tudpock (Jim)

Posted 11/23/2011 11:13 PM (GMT 0)

Tudpock18 said...
...I still agree with ... [the] ...proposal that Medicare and insurance companies refuse to pay for aggressive treatment for cancers with certain characteristics, e.g. G6 with low PSA and low cores/percentages.  

At the risk of taking my own thread off-course, I would put forward the notion that Jim/Tudpock's comment be taken even further (although I have no idea on how to enforce this).  I do not like the fact that my insurance premiums and taxes (for Medicare) get incrementally jacked-up for cases where men are not willing to take the medically-demonstrated basic steps within their direct control to reduce their risk of PC progression...diet/nutrition and exercise.  If you aren't going to do the smart things to slow down your own cancer, then you should pay more for that "luxury" (let's call it the luxury of ignorance).  Health care costs are being driven up by these incrementally worse cases...and we are all paying for it!!

Here's an interesting story on this topic told by Dr David Servan-Schreiber in the book Anti-Cancer, A New Way of Life.  I'll jump into the middle of a discussion about medical studies on diet, exercise and stress reduction conducted on cancer patients:

...By participating in certain programs...patients try to take charge of their cancer, to learn to live in greater harmony with their bodies and their past, to seek peace of mind through yoga and meditation, to choose foods that fight cancer while avoiding those that promote its development.  Their case histories show that they live two or three times longer than the average person with the same cancer at the same stage of development.

An oncologist friend at the University of Pittsburgh, whom I told about these figures, objected:  "These aren't ordinary patients.  They're better educated, more motivated, and in better health.  The fact that they live longer doesn't prove anything."  But that is precisely the point:  If patients are better informed about their disease, if they look after body and mind, and if they are given what they need to improve their health, then they can mobilize the body's vital functions to fight cancer.  They live better and for longer.

This side-bar topic could/should be taken to another thread, and referenced back here so that THIS thread can continue to discuss what the medical community has learned in the last 20 years about the differences in what we still, currently call cancer...and of course of particular interest here is the "low risk" and "very low risk" prostate cancer cases.  Many men have become educated about these learnings, but it's clear that we still have a long way to go to educate others...


Posted 11/23/2011 11:23 PM (GMT 0)
I really think clocknut nailed the issue, it is education. Most men take less than a month to decide on treatment that will most likely have some side effects for the rest of their lives. My uro-doc suggested surgery 6 weeks after dx. He showed me all the statistical data associated with the 3 primary forms of treatment. Then he reluctantly said I could take up to a year to decide. That was my first real clue as to the nature of this disease. Most men never hear that clue, and that is the failure of the medical profession, IMO. No man can make a truly wise decision without all of the known variables. It is not over treatment, it is under education, or I might add, biased education.
Posted 11/23/2011 11:47 PM (GMT 0)
You realize, Casey, that it is my idea Tud is talking about and backing, I liked how you avoided my name in that quote above, reason? I have brought up this proposal at least 3-4 times previous on HW.

david in sc
Posted 11/23/2011 11:52 PM (GMT 0)
Thanks, DanO, that's exactly the point I was trying to make.  The answer to overtreatment doesn't lie in creating new terms for a malignancy.  The long-term solution will happen when all men are fully informed of their options and the risks involved in each of those options. 

If the idea of docs hurrying their patients into surgery bothers me (and it does), the idea of docs insisting that a G6 patient do AS, meditate, drink POM juice and become a vegan or lose their Medicare coverage bothers me even more.  That's an exaggeration, of course, but I think that's the direction we're heading.

Please note that I am not criticizing AS, meditation, pom juice, or dietary choices.  I just don't agree that failure to get involved with these lifestyle choices should in any way affect one's eligibility for insurance or Medicare coverage.

Post Edited (clocknut) : 11/23/2011 5:08:00 PM (GMT-7)

Posted 11/27/2011 12:22 AM (GMT 0)
Casey59 said... ...I do not like the fact that my insurance premiums and taxes (for Medicare) get incrementally jacked-up for cases where men are not willing to take the medically-demonstrated basic steps within their direct control to reduce their risk of PC progression...diet/nutrition and exercise.  If you aren't going to do the smart things to slow down your own cancer, then you should pay more for that "luxury" (let's call it the luxury of ignorance).  Health care costs are being driven up by these incrementally worse cases...and we are all paying for it!! Pretty much the same thing.....I don't like the idea of insurance premiums and taxes (for Medicare) getting jacked-up to pay for lung cancer treatments for those who won't quit smoking...
Posted 11/27/2011 2:58 AM (GMT 0)
Casey,

How could you ever enforce it? An auto kill switch that kicks in if you miss a day's pills, or eat the wrong food one evening?

Posted 11/27/2011 3:31 AM (GMT 0)
I guess what I want to ask is: Is the cost (both economic and privacy loss, and ensuing interminable court cases) of knowing what goes on in someone's life balanced by the cost of treatment savings? You can't decide without that bit of data.

I won't say which side I would come down on since I have the Mod's hat these days.

Posted 11/27/2011 5:26 AM (GMT 0)

142 said...
How could you ever enforce it?  

yeah, as I said earlier, I dunno...as you've implicitly indicated, public health care is a complicated thing.  It just seems like their ought to be an "luxury/ignorance tax" for not doing one's part to try to stop or slow down progression, causing rising health care costs for everyone else.  We can't continue doing things the way we are now...we are bankrupting our children/grandchildren instead of doing the right things...

It seems strikingly similar to the goofy notion of someone getting lung cancer treatment while continuing to smoke...and meanwhile WE pay for it all!


Posted 11/27/2011 5:33 AM (GMT 0)
Casey, do you actually read what you write sometimes, look what you just said:

"It just seems like their ought to be an "luxury/ignorance tax" for not doing one's part to try to stop or slow down progression, causing rising health care costs for everyone else."

For starters, who are you to call other's "Ignorant" because they choose not to do things you suggest or reccomend? And for seconds, where's your compassion for others in those kinds of words?

David in SC

Post Edited (Purgatory) : 11/26/2011 10:44:18 PM (GMT-7)

Posted 11/27/2011 1:52 PM (GMT 0)
seriously, what next, an ignorance tax on waste of bandwidth?
Posted 11/27/2011 3:00 PM (GMT 0)
…Or maybe there should be an insurance break or tax break for those doing the smart things which are known to help diminish the risks of prostate cancer .   Turn it into a positive! For the great majority of Americans who do not smoke, dietary choices and physical activity are the most important modifiable determinants of cancer risk…period.   We clamor about the need to educate men about prostate cancer, but then we tolerate when the same old choices are made…they didn’t “get it” despite the educational efforts.   “Educating the patient” isn’t enough; too many continue to stick their heads in sand at our expense.
Posted 11/27/2011 3:27 PM (GMT 0)
Then how woulld you enforce the "good deed" doers that are doing what you call the "right things"? Most life insurance company's already penalize smokers when they go to buy insurance, and will even do "at home" testing, free to the applicant, and if found to have tobacco use, they have to pay higher rates.

It's all about freedom and choices, isn't it. There would be no fair way to punish the "wrong doers" or any fair way to reward the "good doers", and who would enforce it, who would pay for the cost of enforcement. You have "huge sized" people through no natural fault of their own, people with lung cancer that never smoked in their life, people with liver failure that never drank.

I think with all your intellecutual looking at these issues, is making you appear (key word appear) to be cold hearted toward others with health issues and needs, unless they do exactly what you suggest. Don't you see that as being at least, a bit opinionated and biased toward others?

Now if you wanted to prevent rich people and celebrities from buying their way to the top of organ donor programs, I think that would be a victory for the less fortunate. Not right that someone with money can get a life saving liver, instead of having to wait in line fairly like the rest of those in needs.

Compassion is the key to those that are ill and are in need, not lectures and judgmental statements against them. Part of every doctor and nurse's vows, btw.

david in sc
Posted 11/27/2011 4:22 PM (GMT 0)

Purgatory said...
Then how woulld you enforce the "good deed" doers that are doing what you call the "right things"? Most life insurance company's already penalize smokers when they go to buy insurance, and will even do "at home" testing, free to the applicant, and if found to have tobacco use, they have to pay higher rates.

I didn't realize this...that's excellent!  Learn something new every day!

But while I was at the gym (in between my last post and now), I realized that positive reinforcement is probably the best approach for a public health perspective, rather than an "embarrass the laggards" approach.  The tax breaks/incentives to encourage common sense...I'm ok with that.  Most people are doing the right thing anyhow...I realize it's only a small number of people who don't "get it"...but we are all paying extra for their lack of motivation.

Posted 11/27/2011 8:06 PM (GMT 0)
Casey,

At least in my company, you pay about $70 more each month per smoker in the household for health insurance. You have to make a formal declaration, then they randomly test during the year. If they test you (and wife/dependents who are on the policy), and you said "no" but tested "yes", you are immediately discharged for cause (falsifying employment docs). I'm waiting to see what happens when a family gets tested, and the kid who is smoking in secret gets Dad canned.

I've seen several large employers in my (big metro) area announce that they will no longer hire smokers (current or even quit, but in recent past) period as of 1 January 2012. I believe that may be taking it to an unmanageable extreme, and it will likely wind up in the courts.

You can change some behavior with extreme measures, but in this case, they are limiting job opportunities. It will simply move the expense from the private sector to the public dole if those people don't find other employment.

This is worse than a double-edged sword, but since it runs far off the original question, I think we should probably let it stop -

Posted 11/27/2011 8:23 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. Post Edited (Casey59) : 11/28/2011 9:54:46 AM (GMT-7)
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