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Fighting Cancer

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Re: Fighting Cancer

#41

Post by beachstartup »

Practicality wrote: post #33

Just an interesting related tangent here: My father in law is dying of heart disease (will probably die in People see me upset and the first thing they say is he will get better, or, it will be ok. When I explain the situation, it's something like, "oh, well, I just KNOW he will get better. Don't worry" What? In case you are wondering: He has already had open heart 2 years ago, 4 of 5 arteries are completely blocked…

i also hate saying and hearing platitudes, but recognize that it's only because people don't know what else to say. by telling them about this unfortunate situation, you're kind of putting them into that position.

these days i only tell my problems to people who have the ability to do something about it, or my closest friends who will commiserate without offering useless responses.

Re: Fighting Cancer

#42

Post by yaakov34 »

melling wrote: post #21
danieltillett wrote: post #15

Earlier quoted context omitted.

Cancer is a disease where we are making progress, but not fast enough. The immune-based approaches of the last few years are real progress, but cancers like pancreatic cancer are very hard to fight.

Pancreatic cancer is "hard to fight" because it is seldom detected early, but at a very late stage. I heard Craig Venter once say that the cure for cancer is early detection. Wish I could find the video.

That's not really true for pancreatic cancer. It is absolutely notorious for escaping even when it's detected early, and even after a (seemingly) complete resection. This was in fact Randy Pausch's case: he had a resection with negative margin (meaning no cancer detectable on the surfaces from which the tumor was cut) and negative lymph nodes. For most cancers, his chances of survival would have been excellent, but not for pancreatic cancer. I remember at the time he wrote that it was a 50:50 proposition, but it's actually a lot worse. We don't know why this happens - it probably has to do with early metastasis by very small clumps of cells, or even individual cells.

This is one reason nobody recommends widespread screening for pancreatic cancer - apart from the inevitable false positives and so on. We currently don't have anything very wonderful to offer even to people in whom it was detected early, although it does improve the chances somewhat.

Re: Fighting Cancer

#43

Post by idlewords »

This is a very touching and generous post. I remember the kinds of diet and treatment advice my partner would get when she was fighting cancer, all of it well-intentioned, and wish those people had read this article.

I came to the thread to recommend a recent book by Atul Gawande, Being Mortal, http://atulgawande.com/book/being-mortal/, which covers the difficulties of dying (from age or from illness) and touches on many of the same points as this amazing post.

Re: Fighting Cancer

#44

Post by Retric »

jMyles wrote: post #29

A beautiful read, for many of the reasons already mentioned here. I'm inclined to rethink this one question, though: > Can a single individual patient second-guess the medical machine? Is that really their duty? I don't know if it's anyone's duty , but I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.

> I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.

Try other things and odds are very good your going to make things worse and get many people killed. Yet, some people still don't use seat belts because of those tiny odds it's going to make things worse. Let's avoid vaccines, buy guns, and go vegan because clearly we are a special snowflake unlike those other drones.

Sorry, you and everyone you ever know, or even read about are going to die relatively soon. Such is life and death. But, not thinking about it well that's easy.

Re: Fighting Cancer

#45

Post by ChristopherE »

PieterH wrote: post #34
jMyles wrote: post #29

A beautiful read, for many of the reasons already mentioned here. I'm inclined to rethink this one question, though: > Can a single individual patient second-guess the medical machine? Is that really their duty? I don't know if it's anyone's duty , but I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.

I was hesitant to write this, as I did. It's not a call for passive acceptance. There are a lot of moments when we patients need to prod and push our doctors and nurses. The machine tends to be slow and can miss important things. The patient has to provide feedback ("the pain is worse") and has to insist on the machine listening. Yet given that, it seems highly risky to me to even be open to the notion that I can sec…

I agree with all of these sentiments but I would add a few from our own experience (not particularly terminal illness, but that's likely coming soon with my wife's mass in her lung that we still can't get diagnosed) but with the medical machine in general. We have several special and medical needs children so we're constantly dealing with doctors and hospitals.

I think it's important to do your own research on different treatments and therapies. But the reason we do so is not to get our hopes up but to inquire of our doctors about the treatments. We have two questions. "What about _____?" which is usually followed by "why not?" And once in a while we get the response of "I don't know, let me look into that" and end up trying something that they hadn't considered. It helps us knowing that no stone goes unturned and maybe it'll help the doctor even by learning about (always accepted, not alternative) techniques he/she hadn't really looked into yet.

While we generally trust all of our doctors, in two cases we've found physicians that were barely competent by this method. In both cases, they arrogantly attempted to dismiss concerns or questions but when pressed they made up answers simply to dismiss us. (we say "made up" because we were given responses that directly contradict research and even the monograph put out by the drug company. But fortunately, this is the exception and not the rule.

As for alternative cures, the only way (in my opinion) those can be believed is if you put on your tinfoil hat and believe that the medical establishment is evil, every last man. If alternative cures worked, they wouldn't be alternatives. My son is severely autistic. If only I'd spend more time listening to the Internet I could use these alternative cures and he'd end up being a heart surgeon, I'm sure.

I often wonder why people do that? Sometimes it's the patients (or parents of patients if minor) but it seems to me that it's almost always friends or relatives that try to hook you up with pipe dreams and fantasies. Why is it so difficult for people to accept our realities?

Re: Fighting Cancer

#46

Post by Retric »

edwhitesell wrote: post #38
jMyles wrote: post #29

A beautiful read, for many of the reasons already mentioned here. I'm inclined to rethink this one question, though: > Can a single individual patient second-guess the medical machine? Is that really their duty? I don't know if it's anyone's duty , but I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.

> I don't know if it's anyone's duty, but I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry. I think the more important take-away is each patient should find the treatment that works for them. There are many people who are fully accepting/trusting (whatever term you choose) of the "machine". It works for them, don…

> Some of them work and work very well.

Bull. People get better randomly, but pattern matching makes this really hard to accept. After all, you best get your lucky hat before the big game just like 100,000 other people.

As to caner, day one they are going to tell you your odds of survival long term and they are never 100%. https://xkcd.com/931/

Re: Fighting Cancer

#47

Post by WoodenChair »

Practicality wrote: post #33

Just an interesting related tangent here: My father in law is dying of heart disease (will probably die in People see me upset and the first thing they say is he will get better, or, it will be ok. When I explain the situation, it's something like, "oh, well, I just KNOW he will get better. Don't worry" What? In case you are wondering: He has already had open heart 2 years ago, 4 of 5 arteries are completely blocked…

Okay, I hate to pile on to the advice section. Actually this is not advice, but just a random tip from a random person. I read a book this year that has several anecdotes of people in similar situations to your father-in-law. The doctor who wrote it is radical and outside of the mainstream. Yet, the things he writes make a ton of sense when you have nothing else to lose. It's a short read, and his clinical results speak for themselves. I would feel remiss to not pass it on. Maybe it's a bunch of junk. Maybe when he says he can reverse situations like your father-in-law's (people soon to die of heart disease who have reversed it based on his extreme diet) it's the exceptions. Or maybe I was meant to read it this year so I could pass on this tip: https://www.amazon.com/Prevent-Reverse-Heart-Disease-Nutriti...

Re: Fighting Cancer

#48

Post by omginternets »

beachstartup wrote: post #41
Practicality wrote: post #33

Just an interesting related tangent here: My father in law is dying of heart disease (will probably die in People see me upset and the first thing they say is he will get better, or, it will be ok. When I explain the situation, it's something like, "oh, well, I just KNOW he will get better. Don't worry" What? In case you are wondering: He has already had open heart 2 years ago, 4 of 5 arteries are completely blocked…

i also hate saying and hearing platitudes, but recognize that it's only because people don't know what else to say. by telling them about this unfortunate situation, you're kind of putting them into that position. these days i only tell my problems to people who have the ability to do something about it, or my closest friends who will commiserate without offering useless responses.

I have to agree with this. People can't be expected to know what every individual would prefer to hear in every conceivable circumstance.

Platitudes are often an oblique way of saying "I empathize and I wish you the best" while not being discouraging.

Actually saying the above might be preferable, but it's unfair to criticize the gesture, I think. If I mention this, it's because I think there are parallels to be drawn with other, more contentious, issues in which people take more serious offense.

Re: Fighting Cancer

#49

Post by gus_massa »

PieterH wrote: post #34
jMyles wrote: post #29

A beautiful read, for many of the reasons already mentioned here. I'm inclined to rethink this one question, though: > Can a single individual patient second-guess the medical machine? Is that really their duty? I don't know if it's anyone's duty , but I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.

I was hesitant to write this, as I did. It's not a call for passive acceptance. There are a lot of moments when we patients need to prod and push our doctors and nurses. The machine tends to be slow and can miss important things. The patient has to provide feedback ("the pain is worse") and has to insist on the machine listening. Yet given that, it seems highly risky to me to even be open to the notion that I can sec…

I mostly agree. Just two comments.

[My native language is Spanish, please don't read the "you" here as some direct advice to you, it's a generic "you".]

It's important to get good doctors, there are good doctors and bad doctors, and the default health service doctor may be not be optimal. In most situations it's not possible to get a x10 doctor that will make you live x10 more, but a good doctor will reduce the number of unnecessary and stupid medical procedures and provide better treatment.

[Some people strongly disagree with this.] Read Wikipedia article, all the links, the fist 20 Google results and then a little more. Be aware that the Internet is full of scammers, crackpots, and overhyped press release from universities, so take everything with a (huge) grain of salt. Don't expect to find a magical cure, the idea is to have a minimal understanding of what is happening, understand better what the doctors are saying and what they are not saying, the tradeoffs, the risks, ... Remember that it is not your field of expertize, so don't get too confident. (For example if you are an expert in software, think that it's a hardware problem, so there are many tricks of the trade that you don't know.)

Re: Fighting Cancer

#50

Post by Create »

PieterH wrote: post #34
jMyles wrote: post #29

A beautiful read, for many of the reasons already mentioned here. I'm inclined to rethink this one question, though: > Can a single individual patient second-guess the medical machine? Is that really their duty? I don't know if it's anyone's duty , but I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.

I was hesitant to write this, as I did. It's not a call for passive acceptance. There are a lot of moments when we patients need to prod and push our doctors and nurses. The machine tends to be slow and can miss important things. The patient has to provide feedback ("the pain is worse") and has to insist on the machine listening. Yet given that, it seems highly risky to me to even be open to the notion that I can sec…

I am not sure you came across The Last Lecture, if not you may find it interesting:

https://www.youtube.com/watch?v=j7zzQpvoYcQ https://www.cmu.edu/randyslecture/book/

I consider myself lucky to have had the opportunity to work with you and learn an awful lot along the way. Thanks!

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