If the term "cancer" weren't part of the diagnosis, would more people consider AS?

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Casey59
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   Posted 4/11/2011 12:23 PM (GMT -6)   

The term “IDLE tumor” (InDolent Lesions of Epithelial origin) is being discussed at the national-level because patients eligible for Active Surveillance (AS) feel anxious about having a cancerous tumor in their bodies and not treating it.  It is a “communications challenge” to overcome the disproportional response to the word “cancer” by low risk PC patients…and maybe new terminology is a path forward. 

ARTICLE


normek
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Total Posts : 49
   Posted 4/11/2011 1:18 PM (GMT -6)   
Caey, a man is dx at age 45 with a IDLE tumor. Map out what the next 25 years of his life would be like.

Purgatory
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Date Joined Oct 2008
Total Posts : 23537
   Posted 4/11/2011 1:21 PM (GMT -6)   
Calling any amount of cancer by any other name, or any other reason or purpose, is misleading at the least, and it counterproductive to the patient. Changing the terminology isn't going to change the fact that someone has case, regardless of it being indolent or aggresive.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

Casey59
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   Posted 4/11/2011 1:34 PM (GMT -6)   
normek said...
Caey, a man is dx at age 45 with a IDLE tumor. Map out what the next 25 years of his life would be like.
 
That's a great question, normek, and I need the periodic reminders that some people will be unfamiliar with the AS monitoring protocols. 
 
There are mulitple protocols for monitoring to maintain curative intent rather than one single, universally-agreed practice; here's one in an easy-to-read table:  LINK.
 
 

Gleason 6
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   Posted 4/11/2011 1:42 PM (GMT -6)   
Then at what point and what results from the AS would one have some sort of a procedure (surgery or radiation)?

EnglishBob
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Date Joined Jan 2011
Total Posts : 121
   Posted 4/11/2011 2:12 PM (GMT -6)   
This is a subject i can get quite vocal about, my Urologist wanted me to do the AS route and i was determined to have surgery, after me persisting they let me see the surgeon who also said i was the ideal candidate for AS and he did not want to do the surgery. So i put a scenario to him .......... i said imagine i have inserted a stick of dynamite up your rectum and i have lit the fuse but you do not know if it is a long or short fuse, would you watch and wait ? His face was a picture and he said "ok lets schedule your surgery"

After my operation when they got my pathology results, the cancer had grown and was more aggresive than they found in my biopsy, so in my opinion i made the correct decision.

While i was off work recovering, an ex work colleague died of his prostate cancer because it turned aggressive in between his scheduled biopys and psa blood tests, i dare say his wife and children wished he had pushed for surgery, I apologise if i sound blunt or hard nosed about this but in my opinion any cancer should be removed or dealt with in some manner and i do not see watching and waiting a viable alternative. I think we are all entitled to our opinions and if you want AS then fine and i wish you all that you wish for yourself but i know i made the right choice for me and i wish my ex work mate had decided differently .........

Take care, Bob.
Age 58
Prostate problems since early 40s
Ed since early 40s
April 2007 biopsy & all clear
July 2010 prostate swollen more, psa up to 5.6 August 6.7
September, biopsy again
October 7th diagnosed prostate cancer, Gleason grade 6 at 10% mass
December 13th 2010 open Radical Proctatectomy (non nerve sparing)
Pathology results came back Gleason grade 7 at 12% mass BUT clear margins
Catheter out Jan 5th 2011
Caverject for penile therapy 22nd Jan 2011
Dry at night since 1st Feb 2011
Psa at 3 months post op is now 0.03

Casey59
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Date Joined Sep 2009
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   Posted 4/11/2011 2:24 PM (GMT -6)   
Gleason 6 said...
Then at what point and what results from the AS would one have some sort of a procedure (surgery or radiation)?
 
Another great question...I forget that a lot of men don't know much about how AS works.
 
 
There are different protocols for triggering intervention from the parameters listed on the table I provided in my last post.  Most use Gleason (any departure from 3+3, although some don't recommend pulling the trigger unless it is 4+3 or more), or PSADT (most use either <2 years or <3 years).
 
 
So back to my original post...since there is such an over-reaction to the "big-C" word in low-risk, indolent prostate cancers, and some men fitting this criteria have difficulty with the stress of carrying "cancer" (even indolent), would the proposal to change be beneficial to help overcome this psychological burden?   I see David weighed in on his opinion.  Anyone else?

NotHard
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   Posted 4/11/2011 2:26 PM (GMT -6)   
Bob, I Love it ! lol

i said imagine i have inserted a stick of dynamite up your rectum and i have lit the fuse but you do not know if it is a long or short fuse, would you watch and wait ? His face was a picture and he said "ok lets schedule your surgery"
Age 53yrs [Gold Coast Qld, Australia]
PSA 4 Gleason 7 [3+4=7]
RP 24/12/08 Dr Philip Stricker [Sydney]
Upgrade Gleason Score 7.6 [4+3=7]
Stage 2 Margin status- Focal Involvement
ED- okay with Meds.
PSA at 2 yrs, no change remains 0.03
"Every-day in Every-way I Get Better"

normek
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Date Joined Feb 2010
Total Posts : 49
   Posted 4/11/2011 2:29 PM (GMT -6)   
I dont think that table is feasable. There is no way a man at age 45 that has a rising psa level is going to wait 4 years to get another biopsy. AS as I understand it if for older men who most likely will die from something else before the effect of cancer will need to be treated.
Lets say at 45 you have a biopsy and you have 1 postive core with a small % of cancer, is that indolent or is that start of cancer progression.
Is it overtreatment if the 45 year old man gets treated today? Most of the studies I have seen tend to consider this overtreatment which in my opnion in wrong, no ones knows what the outcome is.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 23537
   Posted 4/11/2011 2:29 PM (GMT -6)   
I think we know how Bob feels, unless he could make it a little clearer.
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 4/11/2011 2:44 PM (GMT -6)   
normek said...
I dont think that table is feasable. There is no way a man at age 45 that has a rising psa level is going to wait 4 years to get another biopsy...
 
 
Oops, oops...  I think you read the table wrong.  In the protocol of the table, a second, confirmatory bioposy is performed after 12 months, then again (the 3rd one) in the 48th month (3 years later).
 
PSA naturally increases with age...and so if the PSA doubling time is very high (from a very slowly increasing PSA, as described in my last post), a reaction to only a very slowly rising PSA value is probably an over-reaction.
 
 
 
 
 
 
edit:  typo

Post Edited (Casey59) : 4/11/2011 2:49:23 PM (GMT-6)


normek
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Date Joined Feb 2010
Total Posts : 49
   Posted 4/11/2011 2:52 PM (GMT -6)   
So how do the studies come up with a % of overtreated cancer patients for indolent cancers? Are they really over treated or just treated earlier?
dx at age 45

psa 3.6, increase of 1.3 from previous year
1 of 12 cores positive, gleason 3+3=6, stage T1C
Surgery January 8th 2010, cath out January 15th 2010
Path report; gleason 3+3=6, 35% of prostate and both lobs involved, upgaded to stage T2C,
organ confined, 1 focal positive margin
Dry and no needs for pads at 8 weeks post op
ED no longer an issue
1 year PSA .01

Casey59
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Date Joined Sep 2009
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   Posted 4/11/2011 3:06 PM (GMT -6)   
normek said...
So how do the studies come up with a % of overtreated cancer patients for indolent cancers? Are they really over treated or just treated earlier?
 
There's quite a few AS programs regularly reporting data; extrapolation of these data provides population estimates.
 
Sounds like you are interested in learning more about AS...perhaps not for yourself, but to help others in the future.  Here's a good article from Dr Laurence Klotz discussing PSADT as intervention criteria.  LINK

John T
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Date Joined Nov 2008
Total Posts : 3538
   Posted 4/11/2011 3:15 PM (GMT -6)   
Why is the idea of calling very low risk PC something else not a good idea. It was done a few years ago when pathologists got together and decided that they would no longer report Gleason 5s. Gleason 5 is technically a cancer, yet it is not reported on a biopsy. I suspect that many men given a DX of a cancerous G5 would select treatment. Also PIN is an abnormality that is a precurser to PC, yet we do not treat PIN, we watch it. Nobody rushes to have their PIN surgically cut out, and this is generally acccepted. If we changed the name of PIN to something that had the word cancer in it what do you think would happen?
Dr Carrol, a UCSF surgeon, suggested we change the name of low risk PC many years ago and it never got any traction.
Why is low risk PC any different from PIN or a G5. All are harmless, but have the potential to become more serious. The main difference is that one has the word "CANCER" and the others don't. They may all turn into something dangerous down the road, but in the current state pose no danger and the probability is that they will remain that way regardless of age.
I think changing the name is a great idea. Study after study has shown that 70% of low risk PC never shows any sign of progression and progression is usually identified within the 1st 3 years. Not all tumors grow. Some remain small and stable indefinitely. Just as treatment is no garantee of a cure; AS also doesn't carry a 100% garantee, just the exact same probabily of a successful outcome that immediate treatment has. I know that this is counter intuitive, but so is steering in the direction of a skid.
JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

clocknut
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Date Joined Sep 2010
Total Posts : 2204
   Posted 4/11/2011 3:32 PM (GMT -6)   
Maybe we should call it something catchy.....like "Cancer Lite."  "Indolent" just makes it sound lazy, and none of us likes to be thought of as lazy.
 
EnglishBob, that was quite a story.  Someone else compared it to having a mechanic tell you that you have a slight flaw in your driver's side front tire.  the flaw is small and it will probably never cause a problem, so go ahead and drive normally, and we'll keep an eye on it, checking it every six months or so.  On the other hand, it could deteriorate rapidly and cause a blowout.  Do you want us to change the tire now, or should we wait?  Your call.
 
No one should ever be made to feel guilty, or that they've made the wrong decision, if they choose to have surgery or other treatment. 

normek
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Date Joined Feb 2010
Total Posts : 49
   Posted 4/11/2011 3:42 PM (GMT -6)   
I am interested in everything about prostate cancer, I had an uncle die from PC, my dad had surgery 6 years ago and my other uncle had seeds 2 years ago. I have seen on this forum a lot of posters recommend AS to anyone with a gleason 6 and low core/% no matter what age. They quote the studies that show a lot of men do not need treatment, and that there is a serious problem with overtreatment. What they fail to mention is that the studies are done on men that are from ages of 59 to 91, with a median age of 77 (or somewhat in that range). If the studies for AS would include men of younger age, their % of men on AS needing treatment would increase. People use the AS studies to come up with arguments of overtreatment, and then extrapolate that number to all patients treated to come up with a final number of people overtreated. A lot of men with similar stats to mine are considered as being overtreated, my question remains the same are, we overtreated or just treated at an earlier. Personaly I don't think I should be counted as an overtreated case but I am. Did I have indolent cancer or did I catch at its early stage? If I would have been 20 years older I would not have had any problems going on AS and taking it one PSA test at a time.

ralfinaz
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Date Joined Jan 2011
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   Posted 4/11/2011 3:44 PM (GMT -6)   
John T said...

I think changing the name is a great idea. Study after study has shown that 70% of low risk PC never shows any sign of progression and progression is usually identified within the 1st 3 years. Not all tumors grow. Some remain small and stable indefinitely.
JT


Can you provide reference of the study after study that shows that 70% of low risk PCa never shows progression?
Phoenix, Arizona
Surviving prostate cancer since 1992. RP; Orchiectomy;
GS (4 + 2); bilateral seminal vesicle invasion; tumor attached to rectal wall. Last PSA September, 2010: <0.1 ng/ml
Laughter is the best medicine!
www.pcainaz.org/phpBB304

Ziggy9
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Date Joined Jul 2008
Total Posts : 881
   Posted 4/11/2011 6:09 PM (GMT -6)   
questionaboutit said...
A cancer by any other name is still a cancer.

Why not just be honest with people and not play semantic games with peoples' lives? Unlike the people that support these silly ideas, I have near unlimited faith in peoples' intelligience and their ability to make wise and correct decisions for. What a cancer patient needs is information, not some elitist, condescending and paternalistic attitude based on the assumption that people are too stupid, ignorant or emotional to make their own decisions and need to have the real facts hidden behind false terminology and the truth doled out to them by someone.

Everyone has a delay between dx and treatment and plenty of time to learn about their options. It would be foolish and immoral to make someone think that they have anything else than cancer and keep them from feeling a need to educate themselves.

Thinking that I am against this silliness.


Because being honest and using the c word triggers irrational fearful reactions in too many. Facts are it is over treated. Fact is there are thousands of men who have needlessly gone through radical treatments and the life changing effects. How many men would never have a day of incontinence or ever use a catheter in their entire lives if their low risk Pca had been called something else? The fact that gleason 5 is gone shows it is a valid avenue to pursue. How many men have had their relationships with their lovers never be the same and for some end because of Pca radical treatments, that they may never had experienced if the disease had been simply been called something else. Contrary to popular belief here for some in this thread the vast majority of men with low risk Pca will die of something else . Not all prostate cancers are the same. It's hard to believe in 2011 this still must be pointed out.

No not everyone has a delay between dx and radical treatments. There are still too many rushing into it 6 weeks after their dx out of fear. Hell there's some here who think that their cancer is only months and not years old. Is it being elitist pointing out that's not true?

Thus I'm all for taking the cancer word out of low risk Pca. I understand those after being treated and encountering what comes will always have a hard time accepting this. Even I with my minimally invasive risk would sure want to believe that even my tft was warranted. But being honest if my PCa had been called something else with AS recommended I would've done that and I would be no worse off then I am now. This massive over treatment of low risk PCa since PSA(even the inventor of it wished he never had as much as it has been abused) testing came about has to end some day. It wouldn't be the first disease's treatments where years later are looked back on in horror and not only the amount of money wasted but the cost in mens quality of life along with their family members. If the way many here think was true years ago we would still see people undergoing lobotomies.

John T
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Date Joined Nov 2008
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   Posted 4/11/2011 6:24 PM (GMT -6)   
Ralph,
There are many studies currently being done on AS
Here are just a few;
UCSF 321 patients, 21% treated
Klotz 299 patients, 34% treated
Warlick 320 patients, 31% treated
Hardie 80 patients, 14% treated
Patel 88 patients, 35% treated. You can google any of these.
One of the most important is the UCSF study that has a control group and a group of AS patients on a diet, excercise and mediation program. There has been no progression in the diet group.
You can also google the Hopkins program.
Dr Lawrence Klotz has done the most work on AS and his studies go out 12 years.
JohnT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Purgatory
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Date Joined Oct 2008
Total Posts : 23537
   Posted 4/11/2011 7:10 PM (GMT -6)   
Since men's PC diagnosis are determined by a biopsy, a Gleason 6 has more than often, been upgraded to a Gleason 7 after surgery, with a full specimen to examine. While I agree with the sentiment of most low grade Gleason 6's being probably indolent, a biopsy, on a good day, is just an estimate.

People talk about overtreament, are usually talking about other, unknown people, and not about themselves.

The Gleason 5 elimination is an entirely different situation. Most Gleason 6's may very well be indolent, but who are we to gamble with someone else's life?

Calling a Gleason 6 anything but a verified case of Prostate Cancer is irresonsible in my opinion.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos marg
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06 2/11 1.24
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10,

John T
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Date Joined Nov 2008
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   Posted 4/11/2011 7:48 PM (GMT -6)   
David,
Gleason 2+3 and Gleason 3+2 used to also be called cancer. No one has complained about the change. Are you saying that this shouldn't have been done and it should still be reported and men make their own decisions about it?
I've heard a lot of negative opinions about AS, but have yet to see anyone supply any data to support their position. Without data it is only an unsupported personal opinion.
The only negative article I've ever seen on AS is one by Cantollona. If anyone has any data to show that AS is a poor treatment choice or not a valid option to consider , please supply it.
JT
65 years old, rising psa for 10 years from 4 to 40; 12 biopsies and MRIS all negative. Oct 2009 DXed with G6 <5%. Color Doppler biopsy found 2.5 cm G4+3. Combidex clear. Seeds and IMRT, no side affects and psa .1 at 1.5 years.

Purgatory
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Date Joined Oct 2008
Total Posts : 23537
   Posted 4/11/2011 8:02 PM (GMT -6)   
John:

I never said anything negative about eliminating Gleason 5 as a cancer, I said that subject was a different matter. Of course it should have been eliminated.

I am not even remotely opposed to AS for those that meet the correct and safe criteria. Even in August of 2008, my uro openly talked about it as a possibilty for some men, but with my 7/7 positive cores of Gleason 7 it wasn't in the cards for me.

I think all men with low grade Gleason 6 cases should strongly consider AS, especially single cores that are positive at 10% or below.

If a man truly is in that situation, then, yes, overtreatment is possible and is being done.

I think the argument for AS would be a stronger sale if there was a sure fire PC test that could prove that a person truly had an indolent case at hand. Until such a test is there widespread, many men, I am afraid, will continue to react strongly to the cancer word and want treatment.

We are on the same side on this one John.

David

Post Edited (Purgatory) : 4/11/2011 8:31:30 PM (GMT-6)


clocknut
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   Posted 4/11/2011 8:15 PM (GMT -6)   

The question was about the term "IDLE tumor."  The fact is, it's a frighteningly Orwellian distortion of language.  Language should reflect reality, not mask it.  We already have a variety of terms.  We describe certain lesions as "suspicious" or "changing" or "pre-cancerous."  In the prostate, we have PIN.

Apparently, Gleason 5 has come to be judged as "pre-cancerous" rather than cancer.  I assume that's true.  Gleason 6, on the other hand, is either cancer or it's not.  If it's not, then we don't really need a new term, but I'll bet most doctors would say that, yes, Gleason 6 is truly cancer.  Using some new term to describe it won't change the reality.  It will only mask it.

It seems to me that AS will have to stand on its own merits as a viable treatment choice, and it's apparently already doing that for a lot of guys.  Pretending that Gleason 6 is not cancer would create confusion, where what is needed is clarity and demonstrable benefit.  Clear language reflects clear thinking, and the more clear thinking, the better for all of us.

 

 


normek
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Date Joined Feb 2010
Total Posts : 49
   Posted 4/11/2011 8:20 PM (GMT -6)   
I also think AS is a viable option if you meets the criteria set out by the experts. I don't think it is a good option nor do I think there is any data out there that suggest it is a good option for a 45 year old.

Squirm
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Date Joined Sep 2008
Total Posts : 650
   Posted 4/11/2011 9:41 PM (GMT -6)   
I think one of the issues with AS is the probability of the Gleason not being the correct rating. Isn't it true that the biopsy and path report of the Gleason score do not always match? I would imagine age plays a huge factor too.
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