Why didn't my oncologist tell me about alternative cancer treatments?

[Marley23]

@brooklynn

I’m a 27 year old male dealing with cancer since I’m 21. After diligently listening to my doctors; I’ve had three surgeries, lost 2 organs, been radiated with 207 millicuries of radioactive iodine, and had liters (literally) of toxic drugs pumped into me – only to see it return and spread to other parts of my body.

A few months ago, after watching my uncle die from the same treatments for the same cancer, I left all my doctors, spent a few weeks reading about alternative treatments and put my cancer in 100% remission (blood markers and CT scans) in 9 weeks – all with simple things I bought online and at a local Whole Foods.

I hope your health holds out, but nobody has all the answers regarding cancer. Knowing how long you have been in treatment, I find it surprising you have not considered the idea that the chemotherapy or other treatments are having a delayed effect.

[CapnPitt]

@TimeWinder

Consider a disease which kills 95% of it’s victims in two years when untreated, and 50% of the time when treated using, say, asprin. But somebody starts a rumor on the Internet that Cheetos cures the disease.

100 people get the disease, and start eating Cheetos instead of taking asprin, because of a distrust of medical science, conspiracy theories, or just unfamiliarity with the science.

Two years later, five stories hit the newsstands about how wonderful the Cheetos cure is. But here’s the insidious part: those five people make up 100% of the coverage of the Cheetos cure. It’s called survivor bias, and in this case it’s quite literal. Only the people for whom the “cure” “worked” are still around to tell their tales, the dead ones cannot. These stories go around and get magnified. And because we love stories about underdogs surviving long odds, the stories will all be “people who took the Cheetos cure and survived,” not “45 people died who didn’t have to.”

And then the really sad part sets in: because of all the publicity about the Cheetos cure, more people start rejecting the beneficial treatment in favor of the bogus one. And because of that, more and more people are “cured” with the bogus treatment and add their voices to the cure crowd. Frito-Lay stock goes up, as do the number of survivors who used the Cheetos cure: but the reality is that the percentage of people surviving the disease has gone down.

If you think this is farfetched, look at the rates of Whooping Cough and other childhood diseases. A disease once all but eradicated is back with a vengeance because a large group of vocal morons have convinced parents that vaccines will cause their children to get autism.

Now, you may very well be cancer free after your regimen. It may even be that your regimen cured your cancer. But as they say in the ads: “your results are not typical.” You may believe whatever you wish, and you may or may not live or die based on those choices. But we, the people of the SDMB, have a moral obligation to try and point out, as voices in the wilderness, that when double-blind clinical trials and statistical hard data meet survivor anecdotes, the truth is going to be what the science says: because it’s the only voice where the living and the dead both get to tell their tales.

Nicely stated and worth reposting in its entirety.

[Bosda_Di_Chi_of_Tricor]

**brooklynn **—you don’t want info, input, or analysis. You just want validation of what you already believe.

Well guess what?
You won’t get that here.

We deal in facts; in reason; in logic.
All of these things disqualify your rubbish.

Failure to use establlished medicine, in favor of hippy-dippy nonsense is merely slow suicide.

[Shodan]

Or perhaps not so slow.

Regards,
Shodan

[bump]

@brooklynn

Bump

I believe this will be the case soon as cancer incidence continues to climb - but so far, the insurance companies can cover all these costs, and they just listen to the doctors, and the doctors only listen to clinical studies… and the cycle continues…

This isn’t the case- insurance companies don’t look for cheaper treatments when and if they no longer can cover the costs; it’s in their interest to find them as quickly as possible and modify their plans accordingly.

Why, you ask? Because insurance companies have shareholders, who expect them to make money for them, and paying more than they have to is not conducive to that goal.

There are actually independent (as in, not part of the insurance company or any of its subsidiaries, or of the health care provider in question) physician review services that review claims that have questions. If there was an effective, approved alternative treatment, they’d likely question why it wasn’t used or recommended in many cases.

The other thing that nobody’s really mentioned here, is that there are hundreds, if not thousands of biochemists, chemists, oncologists, pharmacologists, etc… who are itching to get their names on a published paper or treatment. That’s not even including the graduate students in those disciplines. I think that’s a safe bet that anything obvious enough to be sold at Whole Foods has already been evaluated enough to make a reasonable decision about its efficacy.

[brooklynn]

@Donovan

no, it just hasn’t been PROVEN true.

I know 3 people who have had thyroid cancer, all of whom had surgery, and all of whom are living happy, healthy lives years later (although I know 2 of them take synthetic hormones and I think the third probably is too). I think it’s terrible that your cancer didn’t respond to treatment, I truly feel sympathy for your situation; but I find it hard to throw out the real life results seen by the vast majority of people based on the bad results of one patient

I’m not asking anyone to throw out real life results - or anyone to throw out western medicine - or the amazing things that medicine does, I’m only asking that in a situation like mine, and there many, many people like me with cancers THAT DID NOT respond to standard treatment: offer up alternatives instead of just radiating and medicating us to death.

That’s all.

[Hello_Again]

@brooklynn

I’m not asking anyone to throw out real life results - or anyone to throw out western medicine - or the amazing things that medicine does, I’m only asking that in a situation like mine, and there many, many people like me with cancers THAT DID NOT respond to standard treatment: offer up alternatives instead of just radiating and medicating us to death.

Like they do on Sloan-Kettering’s own website and through their internationally known whole person wellness programs?

[CurtC]

@brooklynn

offer up alternatives instead of just radiating and medicating us to death.

How do you suggest they decide which alternatives to offer? Alternatives, remember, don’t have evidence of their safety and effectiveness. So should your doctors just give up and tell you to go eat whatever green stuff you find growing under the bridge? What you’re suggesting is something like that.

[brooklynn]

@TimeWinder

Consider a disease which kills 95% of it’s victims in two years when untreated, and 50% of the time when treated using, say, asprin. But somebody starts a rumor on the Internet that Cheetos cures the disease.

100 people get the disease, and start eating Cheetos instead of taking asprin, because of a distrust of medical science, conspiracy theories, or just unfamiliarity with the science.

Two years later, five stories hit the newsstands about how wonderful the Cheetos cure is. But here’s the insidious part: those five people make up 100% of the coverage of the Cheetos cure. It’s called survivor bias, and in this case it’s quite literal. Only the people for whom the “cure” “worked” are still around to tell their tales, the dead ones cannot. These stories go around and get magnified. And because we love stories about underdogs surviving long odds, the stories will all be “people who took the Cheetos cure and survived,” not “45 people died who didn’t have to.”

And then the really sad part sets in: because of all the publicity about the Cheetos cure, more people start rejecting the beneficial treatment in favor of the bogus one. And because of that, more and more people are “cured” with the bogus treatment and add their voices to the cure crowd. Frito-Lay stock goes up, as do the number of survivors who used the Cheetos cure: but the reality is that the percentage of people surviving the disease has gone down.

If you think this is farfetched, look at the rates of Whooping Cough and other childhood diseases. A disease once all but eradicated is back with a vengeance because a large group of vocal morons have convinced parents that vaccines will cause their children to get autism.

Now, you may very well be cancer free after your regimen. It may even be that your regimen cured your cancer. But as they say in the ads: “your results are not typical.” You may believe whatever you wish, and you may or may not live or die based on those choices. But we, the people of the SDMB, have a moral obligation to try and point out, as voices in the wilderness, that when double-blind clinical trials and statistical hard data meet survivor anecdotes, the truth is going to be what the science says: because it’s the only voice where the living and the dead both get to tell their tales.

Thank you for a well written post.

Doesn’t the survivor bias work for the opposing cure (in this case, the western approach) as well though? The dead people aren’t around anymore to be vocal about the treatments that did not work?

And in theory, the truth would be what the science says, but I am asking, to a community that thrives on not just listening to what gets shoveled in their face, to consider that the science here has been tainted - and therefore, the truth that science should hold for us is in question.

How do we know my results are not typical if the mere mention of the word alternative medicine and cancer causes well meaning folk to get upset and angry?

I’m genuinely saddened that the general population of SDMB board is so quick to take the word of doctors (who used to advertise cigarettes not too long ago, lest we forget), and oncologists who work for places like MSK who have drug company executives on their boards so wholeheartedly and attack anyone who voices opposition to them.

If SDMB is going to just take a topic like this and simply say well doctors say alternative medicine doesn’t work, so it doesn’t, then what exactly is the point?

[brooklynn]

@Askance

You may well think so, but happily medicine has abandoned such superstitions as manure poltices, arsenic, mercury, bleeding, trepanation, and other such stupidities. The fact is that folk medicine has a record of persistence of patently useless or actively harmful remedies precisely because they had nothing useful to offer. No folk medicine did anything against the black plague, or smallpox in the American natives. The dreadful imposition of inoculation and sewerage did for them quite nicely though. The fact that a harmful practice continued for a thousand years has no bearing whatsoever on its actual usefulness in treating a condition. We still see people being fed tiger penises to treat impotence after thousands of years of “tradition”. Is it your position this should continue, just because it has?

First of all, we really need to move this conversation away from these massive generalizations; just because I’m proposing the few specific therapies I’ve been using have been working for me, it doesn’t mean that I’m advocating my friends eat tiger penises… ok?

Second, some cures have been around for a long time that work, some don’t. I’m only saying that in my view of the history of the last 50 years, it’s perfectly logical to be suspicious.

Yes, there are many advances in modern medicine, but science is at the cutting edge, and us Americans are like kids, we like to put everything in our mouth - often times that turns out to be a mistake because we just don’t fully understand what we’re doing to ourselves until later.

[brooklynn]

@Markxxx

Possible spam post, OP never says what, hoping someone will ask “what things,” then he can tell us and spam “natural” products without actually spamming because someone asked.

Thank you for this brilliant contribution to this discussion.

I’m obviously a spammer for alternative cancer therapies that profit no-one, and clearly not a real person trying to gain some knowledge.

[brooklynn]

@DrDeth

Sure, they want to make money. Which is exactly why they want there to be a cheap effective cancer cure. Oh sure, if there was a non-cheap effective cancer cure, and it was THEIR drug, they’d like that better. But really, there aren’t a lot of cancer treatments out there. So yes, I guess maybe a drug company that had a lot of time and effort and capital invested in a few cancer treatments might not want a cheap effective cancer cure. But every other drug company would love it, for the reasons I brought out- not to mention many other reasons. AND, the insurance companies would love it, and most of the medical community. I know dude who is a CFO of a small semi-start up drug company, they do allergy drugs, and they have an anti-depressant in the works too (however, both fields are fairly crowded). No cancer drugs. So, tell me- why wouldn’t they LOVE to publish that simple cheap cancer cure? Sure, they wont make any money off it directly, but the publicity would make all the rest of their drugs sell like hotcakes, their stock would skyrocket, and their reseach staff would get the Nobel prize. And, in the long run, with dudes living longer, they’d get to sell more anti-allergy and anti-depressants- since dead people are a poor market for either.:rolleyes: This is exactly what their shareholders would want! You’re right, they* do *answer to their investors which is exactly why they want to publish this, asap.

So what you have to show is that not only are the handful of major drug companies who are heavily invested in oncology deciding not to publish it, but ALL the other drug companies (those with nothing to lose and everything to gain), ALL the insurance companies (who want to cut health cost as much as possible), all the major medical universities, and the other 90% of the medical community. They must ALL- every single one- be engaged in this massive conspiracy and cover up… to help their competitors.:dubious::rolleyes:

Dr: It’s simple, these therapies are NOT DRUGS, they are simple knowledge that can be conveyed in one afternoon of reading. There’s no business in it, nothing. Nothing for a company to do with it. Nothing. Not even a penny.

[brooklynn]

@KGS

On the other hand, medicine has happily revisited such things as acupuncture, leeches, medical maggots, massage therapy, nutrition and diet, and other such stupidities…

Dear god: can someone, one of the thousands of readers here share small personal story of themselves or loved one that has relieved themselves of pain or illness (any kind) with acupuncture?

I can, but I’m sure nobody wants to hear it from me!

Is it only in New York?? I know at least a dozen people, personally, that have had some ailment CURED with acupuncture over the years.

Not that it means anything, BUT EVEN MSK offers acupuncture.

Lumping medical maggots and nutrition and diet in the same sentence? C’mon…

[DocCathode]

@brooklynn

Dear god: can someone, one of the thousands of readers here share small personal story of themselves or loved one that has relieved themselves of pain or illness (any kind) with acupuncture?

The plural of anecdote is not data.

[brooklynn]

@Jackmannii

Acupuncture’s basic theories have not been validated and its recognized uses remain minimal and controversial. Massage therapy is similarly no medical breakthrough. Debridement of wounds with maggots was not a previous triumph of “alternative” medicine. “Nutrition and diet” (are these separate in your mind?) are longstanding themes in mainstream medicine and actually based on sound science, rather than fad diets which alt med adopts and drops with dizzying frequency.

There are lots of stories like that of the OP circulating around the Internet. Common themes include insufficient evidence to judge the validity of the claims - we tend to accept at face value things we’ve been told, but almost always lacking are details of diagnosis and treatment to back up the stories. What’s very common is the tale of someone who’s supposedly beaten cancer with supplements, enemas etc., but who doesn’t mention or minimizes the fact that he/she had standard therapy at the same time. The “traditional Chinese medicine” gets the credit; the radiation therapy was a coincidental factor of no consequence. The people who survive on alternative regimes (because their cancer was indolent, because of concurrent effective mainstream therapy etc.) announce their successes; the failures die and don’t make it into the published testimonials.

First off, I’m not trying to be a spokesperson for alternative medicine, I’m only sharing my personal experience. I am doing my best to not omit any details that people are asking for.

Second, I am not taking any other western treatments and I stopped my chemotherapy several weeks before I started this regimen.

Third, everyone knows that people who die don’t make it into the testimonials, that’s obvious. How is that a counterpoint to the people who do survive? People die on both sides of the isle!

The point made earlier about oncologists - the fact that they, their friends and families all are susceptible to cancer and die of it at similar rates compared to the rest of the population needs to be emphasized - and this also applies to people who work at drug companies. Who besides some Evil Fiend would suppress effective cancer therapy? (of course, there are people who think that Evil Con$piracie$ are everywhere).

Sadly, there have been several studies over the years that have shown that a large number (it varies depending on the type of cancer and the oncologists) oncologists that routinely perscribe chemo to their patients, would not want themselves (and sometimes loved ones if it was included in the study) to be treated with chemo.

I’m quoting from a study on non-small lung cancer:

In the MacKillop et al study,[13] only 17% of medical oncologists said that they would take chemotherapy for painful bone metastases and another 17% said that they would undergo radiotherapy to the spine, in addition to chemotherapy, for a total of 34%. Our results show that 64.5% would now take chemotherapy—indicating nearly a doubling from 34% to 64.5% of those now willing to have chemotherapy plus radiotherapy and a quadrupling from 17% to 64.5% of those who would take chemotherapy alone.

The first study was done in 1985 and the later result in 1997, regardless, the fact that 100% of the oncologists prescribing chemo to their patients would want it done to themselves is quite jarring - maybe not to some of the casual readers here - but certainly to anyone, like me, who’s gone through or considering chemo.

I’ve read several studies to this effect.

Lastly, I am really tired of this crap about how “natural products can’t be patented”, so corporations won’t push them. The supplement industry is a multi-billion dollar enterprise. Numerous plant-derived drugs have become widely used, for cancer and numerous other conditions. And after years of moaning by the alties about how Stevia would never become a commercial sweetener because it’s a natural product and would be suppressed by the Evil Sugar Industry etc., lo and behold Truvia has hit the market following the necessary safety studies, and what do we hear from the conspiracy pushers?

Once again, I ask that you not lump my discussion with every other natural product / alternative medicine discussion you’ve participated in the past. I’ve listed the therapies I’m taking in the beginning of this post, and considering that all those products are not mystery drugs or supplements - my arguments that there is no money here is quite valid. In this instance.

And, I feel your point falls very short with Stevia becuase it’s been around … well forever (I’ve had some in pantry from when I was trying to lose weight years ago) and only now is it hitting the market: likewise with many of these alternative therapies, at some point the people suppressing these things run out of steam for whatever reason and then they will come to market. Except I’ll be dead.

[brooklynn]

Originally Posted by brooklynn View Post
Out of the 100+ chemo drugs, quite a few are actually based on what was ‘alternative’ medicine – until someone did clinical trials and then they became ‘chemo’.

@Fantome

Cite? Not doubting you; I’d just be interested in reading about this.

Taxol® = Pacific yew tree bark extract
Cholchicine = the autumn crocus (Colchicum autumnale L.)
Vinblastine = leaves of the Madigascar periwinkle

Even Etoposide, which is what I was perscribed is a semisynthetic derivative of podophyllotoxin which is found in resin from the roots of may apple or mandrake

Seriously, this list is very long because after Eli Lilly sponsors the $200m clinical study they change the name to something very technical sounding and then everyone thinks that they were the ones who invented it. The medicine discovery process is very much aligned with alternative medicine, many modern drugs have their beginnings in some remote tribe or village somewhere where people have been cured from some random root and drug companies send a team out to investigate.

[brooklynn]

@CurtC

Don’t look now, but you just invalidated your own thesis.

We’ve been saying that if something has evidence that it works, it will become part of mainstream medicine. Alternative therapies, by definition, don’t yet have sufficient evidence of their effectiveness and safety.

Now maybe there are some that are considered “alternative” which are safe and effective, but until the studies are done, there’s no way to know. Anecdotes are typically all that alternative therapies have, and anecdotes are notoriously wrong. Even your own anecdote doesn’t count for anything. You had cancer, had standard treatment and alternative, and you got better. Was the standard treatment responsible, or the alternative treatment, or would you have gotten better without either? Not only do WE not know, YOU don’t know. You can’t.

This is not my thesis, I’m just a young pup here to learn :smack:

I understand that is how modern medicine works, and I’m not asking them to change it - only in a situation, like mine, where their approach didn’t work - maybe all I have is anecdotal, but it’s something where they’ve got nothing for me.

[brooklynn]

@CurtC

You had cancer, had standard treatment and alternative, and you got better. Was the standard treatment responsible, or the alternative treatment, or would you have gotten better without either? Not only do WE not know, YOU don’t know. You can’t.

Sorry, one more thing:

I was not doing both concurrently; I did one kind for a few years and it kept on coming back, now I tried another and it went away. Maybe it will come back, but so did the other treatments - so I don’t see why I’m not 1 for 1 here.

[brooklynn]

@sweeteviljesus

In addition to what CurtC said, we also don’t know what was in the stuff you were eating. What part of it had the beneficial effect? How much was in there? If a physician doesn’t have good evidence that a therapy has some benefit, it would be irresponsible (and IANAL, but maybe malpractice) for him to prescribe it. The fact that a treatment has been used for years makes it worthy of investigation; it doesn’t mean that it needs no further investigation or that it is evidence that it works. If you want to use it without evidence, you are on your own, but don’t encourage others to follow you.

This is a good point: I must have gotten comfortable not having a doctor telling me everything is going to be OK (since I know he doesn’t know that for sure anyway) and thus I am more comfortable trying something that doesn’t have a clinical study behind it.

And I don’t mean to encourage other people to do anything - except not blindly listen to your doctor - I think that’s wise advice for anyone being treated for any chronic disease.

[brooklynn]

@Bosda_Di_Chi_of_Tricor

**brooklynn **—you don’t want info, input, or analysis. You just want validation of what you already believe.

Well guess what?
You won’t get that here.

We deal in facts; in reason; in logic.
All of these things disqualify your rubbish.

Failure to use establlished medicine, in favor of hippy-dippy nonsense is merely slow suicide.

I’m sorry you got that impression; I’ve actually learned a great deal from this thread and I’m very thankful for everyone who’s taken the time to respond to my question.

In short though, I think everyone here answered my question very well. This is what I understand the general consensus to be:

Modern medicine deals with clinical trials; until someone takes interest in a specific alternative therapy and conducts these trials - the therapy does not work and everyone for whom it worked is not reading their results right, is biased, ignorant, or simply not a valid person since it has not been peer reviewed (even though the same therapy will be patented by a drug company a few years later after enough people have the balls to try it without their doctor’s blessing). Therefore, it should not be recommended - even in a situation where what the doctor has to offer is also a crapshoot.

Though the traditional approach has a 50-65% overall survival rate, which has not declined in many years, and (to my young brain) uses more cancer causing substances to eradicate your first cancer - because that’s where modern medicine is up to these days I should just swallow my instinct and walk back to MSK to get more of the same and hope for the best.

Once again, I thank you all for being so patient with me and I wish everyone the best of health!