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Post by Tony Crispino on Aug 10, 2014 15:54:05 GMT -8
At ASCO two years ago I attended a break out session that discussed the terms remission and cured. There is no consensus on these terms. But they start with definitions:
Cure: to relieve (a person or animal) of the symptoms of a disease or condition. "he was cured of the disease". From NCI: To heal or restore health; a treatment to restore health.
This term was discussed with caution. The term states to relieve the symptoms however we in prostate cancer know that many cases are asymptomatic even when advanced. So to define cured in PCa we might think of an undetectable PSA after therapy such as radical prostatectomy. Or maybe a low and never climbing PSA after radiation therapy. But the problem with that is that 5% of men do not have a climbing PSA when they were detected in the first place. Or even if they did they had a relapse that was terminal and never had a climb in PSA. So is cured the right term for them? No. it isn't.
From NCI:
Remission: A decrease in or disappearance of signs and symptoms of cancer. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may [or may not] be in the body.
Remission is the preferred term for physicians when a disease has been stabilized. They may mean a complete undetectable state but not always. Telling a patient he is cured of his cancer is simply put ~ error prone. "Doctor, I thought you said I was cured. What do you mean it's back?" is a position physicians do not like finding themselves in. No longer in remission is easier to explain when a patient relapses. The NCI definition of cure is better than the online Google definition because the Google definition only talks about symptoms. So it is that it really does not apply to PCa when in fact a patient may have only had a biomarker that indicated he had the disease and he never exhibited symptoms. Most patients after treatment for locally advanced and advanced cases can be "cured" by that definition. The NCI definition of to heal or restore health also still indicates that the term is vague and implies that it is not a permanent state. "I ate Campbell's soup and it cured my cold" is an obvious fallacy statement, but to one who ate the soup and his cold soon went away it is a perception. At least until a new cold comes along and the track record for Campbell's soup gets fly in it.
Dr. Snuffy Myers in his book refers to remission as a state of disease inaction while on treatment and the disease is responsive. He also refers to "Durable Remission" as the state of a disease remaining inactive after treatment is stopped.
My doctor, Dr. Vogelzang earlier this year said that I am cured of my advanced prostate cancer. Of course I asked him after my breakout session "by that what do you mean"? He laughed and said "well your disease appears inactive and you appear to be ready to die of something else first". I laughed and I told him "that wasn't very comforting". Again we volleyed laughs and he said "OK, you are in remission". I told him to "go back to the other term and I'll shut up". He said "you know this game, Tony. There are no guarantees for anyone who gets a cancer diagnosis"
At the conclusion of the seminar they point out ~ these terms are ambiguous. Their use is mostly great news to a patient diagnosed with any form of cancer. In fact the best news they will hear in their journey. And the worst ones are usually ~ "it's back" or "relapse".
So pick your definition. And try to achieve it. I do know this game. There are no rules.
What are your thoughts?
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Post by Allen on Aug 10, 2014 17:02:13 GMT -8
Your NCI definition "...although cancer still may [or may not] be in the body" conflicts with the accepted definition (Webster's) of "remission": a diminution of the seriousness or intensity of disease or pain; a temporary recovery. So if the cancer is not in the body, it is not in remission, it is cured.
I also prefer Webster on "cure":relieve (a person or animal) of the symptoms of a disease or condition. (there is a second meaning: eliminate (a disease, condition, or injury) with medical treatment)
Can we ever know with certainty that all traces of any cancer or pathogen are eliminated? Not with current technology. So Webster's first definition of the word "cure" seems to be the most useful one. As long as there is no evidence of disease, either biochemically or clinically, one is cured.
As far as I'm concerned, I'm cured, and I will stay cured until there is evidence that I'm not. I believe this attitude is psychically healthier and that anyone who remains attached to his former disease, in spite of all evidence to the contrary, is causing his own (needless) suffering.
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Post by Tony Crispino on Aug 10, 2014 17:23:20 GMT -8
To be clear "my" definition differs from NCI's that was taken from their glossary. But I'm with you, saying I am "cured" is better than saying I am in remission, at least it feels more definitive.
But even Webster is ambiguous. With prostate cancer we NEVER know by that definition that we are cured. It's an absolute statement that says "out of the body" when in fact prostate cancer cannot ever be confirmed in that light. My best buddy here in Las Vegas came to me one day and asked me about it because his father had a relapse after 29 years. Max had no PSA but was having severe bladder spasm's when they did a biopsy and found that the tumor causing the spasms tested positive for PAP. It was prostate cancer and no indications existed that it was until it was stage IV and wreaking havoc. Previous when I was diagnosed my friend was telling me his dad was cured when I was diagnosed and that was comforting. But it was less comforting when he was actually in a remission and nobody saw that freight train coming.
Again when Nick pointed out there are no true forms of the definition use the term that suits you best...:-)
I guess I would call that another form of personalized medicine...
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Post by lupronjim on Aug 11, 2014 7:57:52 GMT -8
Lately Dr Charles "Snuffy" Myers' weekly videos have been about durable and complete PCa remission. He has completed some on surprising topics like radiation therapy and testosterone remission and has more planned. askdrmyers.wordpress.comLupronJim |
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Post by Tony Crispino on Aug 12, 2014 19:23:14 GMT -8
Some excellent replies on HealingWell.
And some interesting ones here:
Dr. Ian Thompson:
"Tony. I never use the term 'cured' as it suggests that I can foretell the future with 100% certainty (which I clearly cannot).
I do tell some men that "I think you have a very low risk, perhaps even an exceptional low risk, of the cancer coming back".
I hope that helps.
All the best
Ian"
Dr. Maha Hussain:
"Hi Tony
Hope all is well
In the clinical lingo that we use , cure implies a person will live and die with no evidence of disease. Remission is a state of “no disease activity” that may translate to cure. Pca pts can be cured based on setting. However a pt with metastatic disease who has suppressed PSA and stable or improving scans is in “remission”.
Thank you for reaching out
Best
m"
Dr. Brian Lawenda:
"Cured is rarely used because there is no way to know for certain the cancer won't come back. Cured would mean every last cancer cell is dead or permanently inactive."
I responded "So if I die of something else and never relapse I have been cured? lol"
Brian replied: "oh relax".
He was responding from Costa Rica (he says with lots of spiders and snakes). :-)
Still awaiting David Quinn's reply but I hear he is in Germany. I need to get out more... I think I'll try Primo (Lucky) Lara next...In fact I need to get him on our panel.
Also thank you Ian for also confirming a future webinar with us.
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vfxer
Junior Member
Posts: 11 
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Post by vfxer on Aug 12, 2014 21:07:55 GMT -8
Thanks for sharing the article. I think it was great. You know after reading all of this to me it doesn't manner to me if a doctor tells me that I'm "CURED" or in "REMISSION". Having the word "CANCER" attached to me means that the rest of my life I may have some problems in the future but I'm not going to let it change the way I live my like. In the end on my Dead Certificate the word Cancer as the "Immediate Cause" or Cancer will be in the section "Other Significant Condition". So to me cured or remission means the same thing.  |
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Post by Tony Crispino on Aug 12, 2014 21:26:09 GMT -8
I'm good either way. I'd wish we had a way to prove we won't be seeing it again, but like you said, there isn't. Thanks for the great reply. It's yet another disparate response, but it's the nature of the beast.
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Post by Tony Crispino on Aug 13, 2014 5:08:23 GMT -8
A little over a year ago, on the InfoLink PCAF member Mike Scott posted this great piece on a study, Miller et al, on how often clinicians used the term "cure"... I think it's relevant. I believe that this was one of the quoted studies from the seminar. Article on Miller et al - A study on using the term Cure! |
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Post by Allen on Aug 13, 2014 17:49:02 GMT -8
There is a difference in what a doctor can say and what a patient can say. A clinician is there to provide objective statements; the patient's job is to decide what those facts mean to him.
A doctor is not a fortune teller and can only deliver the facts. He can say, for example, "your body has no evidence of disease." He can also make statements like, "In my experience (or, even better, the statistics show), patients who have no evidence of disease have a high probability of staying that way."
The patient can and should translate this to mean that in the present moment he is cured.
I think that anyone focused on remote possibilities in some distant future is doing himself a disservice. Hindsight is 20/20 and is equally useless and destructive.
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Post by Tony Crispino on Aug 13, 2014 18:05:05 GMT -8
I agree Allen with that last sentence. But we have arrived at the proverbial glass of water with that. Half full or half empty. It is human nature to want to ask the question and to trend our decisions based upon how we live our lives. If one is expecting it to come back, giving themselves odds, then their disservice is expected. I think what we see with Maha's reply it depends on the setting. If you're a Gleason 10 and you have surgery and your PSA drops out to remission, would you not be more likely to say "remission" than cured? Conversely if your were a G6 guy with 1 in 16 positive to 9% and you had surgery and your PSA drops out, would it not be more tempting to say "cured"?. I know guys on the opposite side of that spectrum. The G10 guys saying cured (he was not by the way) and the G6 speck that can't sleep at night before a PSA test.
It's why personalized medicine is so important. The mindset of each patient may decide the term used. Two docs above, both terrific docs say never use the term cured. One says it's possible in certain settings that a patient was cured.
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Post by Allen on Aug 13, 2014 19:55:59 GMT -8
To be precise, they don't say never use the term cured. They say that they don't use that term, which is why they should limit what they say to the kind of words I suggested above.
But the more interesting question, and the one I deal with a lot as a patient advocate, is the one I think you are implying: How to deal with the patient who is obsessed with worrying over eventualities that may never come to pass, often doing needless testing and getting in the way of living his own life. And conversely, how to deal with the patient who is in such denial that he doesn't take appropriate measures against the disease he has.
I hasten to add that for most of us, the patient is ourselves.
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Post by KC on Aug 14, 2014 5:57:05 GMT -8
I think that anyone focused on remote possibilities in some distant future is doing himself a disservice. Here's a great lesson: A Professor walked around a room full of students while teaching about stress management.
To begin his lecture he grabbed a glass of water and raised it above his head as if he was going to propose a toast, and instantly everyone expected they’d be asked if the glass was half empty or half full as part of the lesson. Instead though, with a smile on his face, the professor asked "How heavy is this glass of water?”
Students called out answers "6 ounces" and "10 ounces" but he shrugged them off.
He replied, “The actual weight doesn’t matter. What really matters is how long I've been holding it. If I hold it for just a minute it feels very light. If I hold it for an hour, I’ll have an ache in my arm. If I hold it for a whole day, my arm will feel numb and paralyzed. Any longer than that and I will be very tempted to give up and drop it. In each case, the weight of the glass doesn’t change, but the longer I hold it, the heavier it becomes.”
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Post by Allen on Aug 14, 2014 11:19:29 GMT -8
Great metaphor, KC!
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Post by Tony Crispino on Aug 14, 2014 12:34:07 GMT -8
That is a great analogy, KC...
Also I just heard back from another great guy:
Dr. Primo Lara:
"In many ways, it's splitting hairs. For many folks, the term "cure" has a nicer ring to it but fundamentally the goal is to make our patients simply live longer and live better."
I like that one too. And I'd like to welcome Lucky to our panel. :-) John has already been copied on the correspondence. Dr. Lara is well known for his research and is one of my favorites to talk to when we meet at the group meetings. Very kind and a great sense of humor. I'll update the panel list later with him added as well a Merel Grey Nissenberg who also has agreed to join it.
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Post by ardee on Aug 14, 2014 21:41:25 GMT -8
There is a difference in what a doctor can say and what a patient can say. A clinician is there to provide objective statements; the patient's job is to decide what those facts mean to him. A doctor is not a fortune teller and can only deliver the facts. He can say, for example, "your body has no evidence of disease." He can also make statements like, "In my experience (or, even better, the statistics show), patients who have no evidence of disease have a high probability of staying that way." The patient can and should translate this to mean that in the present moment he is cured. I think that anyone focused on remote possibilities in some distant future is doing himself a disservice. Hindsight is 20/20 and is equally useless and destructive. Allen - this almost paraphrases my post in response to Tony's thread on Inspire. rd |
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Post by Tony Crispino on Aug 15, 2014 1:21:14 GMT -8
And thank you for that reply, ardee.
I do agree with both of you. But interestingly the physician replies, while a bit different are not much varied much by the patient community. I think my exchange with Vogelzang is a variance for the patient/doctor relationship as we are friends. But in fact the Inspire responses, and the HW and here responses are pretty consistent and varied as the physician responses above.
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