Alternative cancer therapies: The quest for certainty

"I don't want knowledge. I want certainty!"

--David Bowie, from Law (Earthlings on Fire)

I know I've already said this once, but I have to say it again, but it's been a rather stressful week on the old blog, but I hadn't planned on writing about this particular topic again (although I will say that this will likely be the last time I do write about it for a while, perhaps forever, unless we learn something new). A little more than one week ago, a young Australian woman named Jess Ainscough, better known as "The Wellness Warrior," died a potentially preventable death due to a rare form of sarcoma because she chose the quackery that is the Gerson protocol instead of radical surgery, a sad event that I discussed in last Friday's post. Although I expected some criticism from from Ainscough's fans, I didn't expect that post to drive more traffic to this site in a three day period than any other prior three day period in the ten year history of this blog, nor did I expect the flood of comments (approaching 1,000 as I type this). In any event, in response to a post by an "alternative health" paleo nutritionist, I discussed what, if anything, the "alternative health movement" would learn from her death (nothing). Finally, in response to an excellent post by an oncologist about alternative medicine for cancer, I discussed alternative oncology versus real oncology.

The story of Jess Ainscough is a sad one. Certainly, it saddened me to see such an obviously intelligent, talented, and vibrant young woman throw away her one best shot at surviving her cancer, and when the inevitable occurred it saddened me even more, particularly realizing that the same quackery had also claimed the life of her mother Sharyn, who had relied on the Gerson protocol as well to treat her breast cancer and died last year. Indeed, that was the first time I became aware of Jess Ainscough. I could understand somewhat why she did it. After all, as I discussed in the links above, for her cancer cancer, a synovial cell sarcoma of her upper arm, the first recommendation was for what sounded like a forequarter amputation (warning: link leads to graphic surgery photos), a radical amputation that includes the shoulder, axillary contents, and the shoulder blade. I could understand why she leapt at the chance to avoid that disfiguring surgery when her surgeon offered her isolated limb perfusion, even though I know that isolated limb perfusion rarely completely eradicates limb sarcomas. Ainscough was no exception. Her tumors shrank away, as tumors often do in response to limb perfusion, and then recurred a year later. It was at that point, when amputation was then recommended again, that Ainscough chose the Gerson therapy. Over the next few years, she became famous in Australia as an advocate of "natural" diet and living, in particular raw vegan diets.

All the while her tumor, as epithelioid sarcomas tend to do, was slowly but relentlessly progressing, something she had increasing difficulty hiding during the last year of her life.

So why write about her again, given that I've already written two whole posts about her and a post that used her case as a jumping off point to discuss cancer quackery? For some reason I didn't finish a post last night, leaving me without anything this morning. Fortunately, I found something in my moderation queue, a post from someone who claims to be a friend of a close friend of the Ainscough family. Obviously, I can't verify this other than by looking at the IP address and confirming that it does indeed originate from Queensland as claimed, but the account in the comment appears to ring true to me based on what I know from other sources. Here's what "Family Friend" relates:

I've debated posting this, but I feel I have to.

I'm a family acquaintance. More a friend of a close family friend, but I do know the Ainscough family, and it's important that her followers know what the last year or more was actually like for Jess.

She was tremendously shaken up by the death of her mother. Much more than her last blog posts let on. She was not only grieving the loss of a parent, but she felt a lot of guilt and suffered a crisis of faith.

Before her mother's death, she could argue a doctor under the table with nothing but unbridled confidence. She believed so much in what she was doing, that she cannot be considered a fraud. A fraud knowingly deceives people for gain. Until the death of her mother, she believed everything she stood for, down to the letter. Until that moment, she had not seriously considered her own mortality.

After, her health deteriorated very quickly. She dealt with grief, guilt and depression on top of her worsening physical condition.

Towards the end, she was desperate and deeply regretful. It's one of the big reasons that her social media accounts, website and videos were deleted. The truth is, she died knowing that she rejected treatment that may have saved her life, or at least prolonged it. If you put yourself into the shoes of a young woman who has to face that she gambled with her life and lost, you will realise what a terrifying revelation that is.

To concede that you were wrong about something is a bitter pill to swallow, but to know that it will lead to your premature death is just unimaginable.

I've already seen commentary around that suggests that her crisis and questioning of her treatment led to negative energy that made the cancer flare up. That is simply not true. Her arm in particular degraded at an expected rate, even during the height of her positivity and commitment to her regime.

I personally did not believe in what she was doing. It was also a bone of contention and cause of frustration for some other family and friends, but rarely spoken about directly. The result is sad for all involved, but it was not unexpected to some of us. And there is no joy whatsoever to derive from being right in this situation.

I understand why her followers and associates are coming to her defense. They only ever really knew the dedicated and passionate Jess that would not hear of any other treatment for her condition. They're looking for holes and logic and conditions in which this could all still fit, though tragically, into what she believed and taught.

The tragic truth is that, in the end, she didn't believe it. She did not regret her healthy lifestyle, but she most certainly did regret rejecting conventional treatment.

First off, I thank this person for posting, whoever it is, for posting this.

One thing that stands out is the statement that there is "no joy whatsoever to derive from being right in this situation." I couldn't have said it better myself. Ainscough's fans have been dropping comment after comment about how I'm supposedly evilly cackling as I dance on Ainscough's grave (metaphorically speaking), when nothing could be further from the truth. I hate to see it when cancer quackery claims another victim, as regular readers who've seen previous posts about previous victims know. My only purpose in discussing these cases is to try to prevent others from making the same bad choices that people like Ainscough have made. The other point that stands out is how despicable some of her followers have been. I, too, have seen posts in which it was claimed that the reason Ainscough's health deteriorated was because the death of her mother spoiled all the positive energy that had been keeping her cancer at bay, sometimes coupled with an insinuation that she didn't do Gerson right. Indeed, the Gerson Institute itself Tweeted:

In other words, Charlotte Gerson herself is basically washing her hands of Ainscough's death by saying, "That was three years ago." The reason Ainscough "discontinued" Gerson was not because she rejected it, but because she had finished the two year course of therapy the Gerson Institute recommends.

In any case, it does seem, if you looked closely at her public postings (which are rapidly disappearing down the memory hole), that Ainscough did fall into a depression after the death of her mother. That's completely understandable, particularly given how close they were. It also makes sense that this "shook her faith." Alternative medicine in general, and alternative cancer treatments in particular, are very much like religion in the level of belief in the irrational necessary. Before the death of Sharyn Ainscough, it's not hard to imagine that to Jess could easily let herself be deluded that everything was fine, that her cancer was under control thanks to Gerson therapy and the healthy diet and lifestyle that she was promoting, and that her mother would be fine too. Then her mother's health deteriorated, and her breast cancer claimed her. It's very easy to see how this would be the sort of event that shattered her faith in what she was doing and made her start to doubt herself. No doubt it didn't help that her mother's death coincided roughly with her disease having progressed to the point where it was no longer possible to deny to herself that it was progressing. Indeed, it was becoming increasingly difficult for her to hide how bad her arm was becoming to her followers, even with the help of credulous press coverage.

I can understand, at least as well as anyone who hasn't made such a mistake himself can, what a bitter pill it was for Jess Ainscough to swallow last year as she realized that she had rejected the one best shot at survival, even if that choice was so brutal. In fact, the Ainscough family unwittingly helps explain why she might have made her choice in a press release they published in tribute to The Wellness Warrior:

Throughout almost seven years with the disease, Jess worked with some of the world's best healers and oncologists undergoing both conventional and unconventional therapies.

Conventional treatments at the beginning appeared to help temporarily.

However when the cancer returned and doctors explained there were no real guaranteed options at that stage, Jess elected to devote herself to unconventional treatments which included Gerson Therapy for two years.

Note the phrasing: "No real guaranteed options at that stage." That's rather different than the story Ainscough routinely related, namely that her doctors told her that her disease was "incurable." What they probably told her is that the only treatment with a chance of eliminating her cancer and letting her survive was the radical forequarter amputation. What they also probably told her is that there were no guarantees, that even that disfiguring of an amputation had only a 50-75% chance of letting her live ten years. (I base my estimate on a previous discussion elsewhere.) With that discussion coming in the wake of her tumor's having recurred after isolated limb perfusion, no doubt Ainscough wanted a guarantee. Unfortunately, in medicine there are no guarantees. That's a very hard thing for many people to accept, because we humans want certainty. That's why alternative medicine, especially for cancer, is so seductive. In contrast to choices like the one Ainscough faced five or six years ago after her sarcoma recurred, alternative medicine offers certainty.

More like this

Looking at the pictures of the forequarter amputation, I really can imagine someone looking into everything that is presented as an alternative for this. I can imagine loosing my breasts and though less favorable, missing an arm doesn't look like a big deal, compared to this. It really makes me wonder what clothes to wear, missing a complete shoulder.

I think this is the most depressive story I've read for a long time.
Poor girl with an awful disease, misguided, and then dying regretful, shattered. How this could have gone worse ? If only it could sink Gerson's therapy forever, but I know it won't so it's even more depressing. Legal serial killer protocol.

I'll welcome some Mikey A. stupid action to light me up.

Your posts on this subject, Orac, have been sensitive and truthful, and very important. I have found Jess's story very uncomfortable ... my mother and step-father both died of cancer, and both elected to use alternative therapies to treat themselves.

My mother's journey did start out with conventional treatment, coupled with CAM, but when offered chemo she decided to go CAM all the way. She was in a hospice in her final hours and heavily sedated, so did not suffer too much at the very end. But she had months of suffering up to that point.

My step-father, however, rejected doctors as soon as he was diagnosed. His route to the end of his life was one of enormous suffering and pain. It was awful to witness.

Both spent a huge amount of their remaining funds on these therapies, sent to cancer quacks in Germany, or given to dentists who charged a fortune to take out all the "cancer-causing" mercury in their mouths, as just a couple of examples.

The people who sell these "cures" are criminals as far as I'm concerned.

By Felis Uncia (not verified) on 06 Mar 2015 #permalink

I can't bring myself to look the forequarter amputation link. I will take Orac's word that it's a rather grisly procedure.

So I can absolutely understand latching on to any treatment (no matter how implausible it might be) that would spare someone from such an amputation. If Jess Ainscough had left it at that, then I would still be saddened by her choice, but would accept it as the choice that consenting adults can make when faced with life-threatening disease and a grisly surgery or treatment regimen as the only curative option.

However, the story that Jess (and others around her) told about her condition, as well the promotion of a treatment protocol that never worked, is what's troubling. I can understand that she truly believed Gerson worked and her lifestyle was keeping cancer at bay, but at some point it appeared reality set in.

If what this family friend says is true, there's a big part of me that wishes that Jess Ainscough had come clean - as painful as that might be - in those last months. It would've done so much more good that just taking everything down. The latter is an understandable reaction, but the former would've shown the courage, passion and love for others that those who knew her say she had.

I've seen someone who had this procedure done. It's disfiguring, in the sense that you plow straight through the uncanny valley when you look at someone whose had it done. Their profile is all wrong, and its unsettling. That said, there are prosthetics that, while they don't restore function, can at least restore a normal profile. Strapless gowns are obviously out, though, as are a lot of activities.

I love to knit, and to play the piano, and I think I'd rather lose a leg than an arm. I use my hands for so much . . . so I can understand her revulsion at the option offered to her. But it's tragic that it ended as it did. I am not sure whether I'd go for the amputation or accept my fate and go with palliative care. But Gerson's was just a waste of time and money, and it had to have been agonizing to realize it was bunk. Seeing her mother die must've been a gut-punch.

There are no winners. Except maybe the Gerson Institute, and that's the part that makes me mad.

By Calli Arcale (not verified) on 06 Mar 2015 #permalink

As disfiguring as the initial surgery might have been, medical reconstructive options have expanded significantly over the past several years.

I was just listening to an NPR piece where a wounded refugee from Syria was treated in Israel (his jaw was blown off by a piece of ordnance) and they were not only able to save his life, but they re-created his jaw using 3-D printer technology.

I wonder if that might be an option after this type of surgery? It certainly would eliminate or at least minimize concerns that people might have.

Orac - can you take a guess if this might be an option for future patients in need of this surgery?

@ Quark:

Unfortunately, Mikey A hasn't provided any certifiable lunacy today, rather he opines about the safety of small aircraft ( I think I read somewhere that he's learning how to fly.....a plane, that is); he has recently been blathering about his mini-farm 3d printed inventions that will save the world from hunger, illness and death or suchlike and his stance against the vaccine G-stapo.

THUS I'd recommend- for pure unfiltred Mikey- go to health and read his long and winding bio. I think you'll enjoy it immensely.

By Denice Walter (not verified) on 06 Mar 2015 #permalink

@Calli Arcale

I clicked the link and looked at the photos, and what disturbed me most were the post op photos. I can't blame Jessica Ainscough for pursuing any treatment but this, but to advocate it to others? And if that what that commenter said about her regretting her decision? That's crossing a line.

By Sian Williams (not verified) on 06 Mar 2015 #permalink

" ... The tragic truth is that, in the end, she didn’t believe it. She did not regret her healthy lifestyle, but she most certainly did regret rejecting conventional treatment... "

How utterly heartbreaking.

By Selena Wolf (not verified) on 06 Mar 2015 #permalink

@Denice Walter : Thank you, that's sound promising.

I think I’d rather lose a leg than an arm

I can understand this, even though I don't have much personal experience of people who wear prosthetics. For one thing, there are so many activities that involve using one's hands. But in addition, it's probably easier to conceal a prosthetic leg from your casual acquaintances than to conceal a prosthetic arm, especially if you are a woman. You can wear full-length slacks, jeans, or ankle-length dresses, and wear the sort of shoes that cover the top of your foot (high heels are obviously out of the question, and sandals would show the artificial foot). And as long as you avoid the beach or poolside in summer, it is always socially acceptable to choose one of those options. With a prosthetic arm, even if the hand is a good simulation, you would have to wear shirts or blouses with full-length sleeves all of the time, and there are many more situations where that wouldn't be socially acceptable.

I also agree that a patient with this kind of cancer has to decide for herself whether the social cost of the treatment is worth it, and I can understand why someone (especially a young woman) might think it isn't. But the patient has to understand that the alternative to the amputation is premature death. Then she can take steps to maximize the quality of her remaining life. As you say, the Gerson protocol is a waste of time and money, and someone with Ainscough's diagnosis who chooses not to amputate doesn't have time to waste. And probably not money either, because it's difficult to hold a job while adhering to the Gerson protocol, and insurance companies will likely (and correctly) not cover the expense.

By Eric Lund (not verified) on 06 Mar 2015 #permalink

#4" If what this family friend says is true, there’s a big part of me that wishes that Jess Ainscough had come clean – as painful as that might be – in those last months. It would’ve done so much more good that just taking everything down. The latter is an understandable reaction, but the former would’ve shown the courage, passion and love for others that those who knew her say she had."

This is exactly right. To publicly renounce the quackery she so enthusiastically endorsed would have done far more good than just going dark.

Recall what Suzanne Sommers said about her book on quacks. Regular doctors won't tell you they can cure you. The doctors in my book will.

Yep, you need them to lie to you to tell you that they will cure you. Those evil regular doctors are bad because they insist on being honest, and struggle to actually define "cure" much less use the word.

By Marry Me, Mindy (not verified) on 06 Mar 2015 #permalink

Orac, thank you for posting the link to pictures of what a forequarter amputation looks like. I think it helps people better understand just what Jess was presented with. I know I would have a hard time making the decision about whether to undergo the surgery or to simply accept my fate and make my remaining time as comfortable as possible. Alt-med would not even be an option I'd consider (I hope).

The family friend's post does make it more heartbreaking. I agree, perhaps it would have been best if she had recanted in the end but would the believers have listened? I have seen too much evidence that true believers recanting and embracing science again are often (always) attacked by their former supporters in an extremely vicious fashion. Perhaps in the end Jess understood that and just couldn't face the backlash that would have transpired. I mean the best she could have hoped for was to be considered deluded while they tried to lead her back to the fold but she could very well have opened herself up to hateful attacks while she was already staring her own mortality in the face. Plus as we have seen before the true believers wouldn't have been helped. I am doubly sad for her now.

An acquaintance had her left arm, shoulder, and breast amputated last year due to necrotising fasciitis. It was quite the ordeal to recover from, and for a while, they didn't know if she would recover, or even if the operation would work. From the things she said I can understand why someone would reject that procedure, and gamble on something else. This Jess story just gets more heart-breaking all the time.

Incidentally, the acquaintance mentioned above has now returned to teaching drama, acting, and is writing a play about her experiences. When the play is performed, her friends, family, coworkers, students and supporters are going to pack the auditorium to standing room only.

By Dan Andrews (not verified) on 06 Mar 2015 #permalink


All your posts on this topic have been sensitive and fair. I just hope a few alternative fans see this and reconsider.

Thank you.

It was with reading a thousand posts to get to Family Friend's. Thank you Orac for highlighting it and for all that you do to expose this quackery. Although Jess' death was predictable, I was utterly depressed by it and knowing know that at the end she was filled with regret...well...thst's a fate I wouldn't wish on anyone.

By Charlotte (not verified) on 06 Mar 2015 #permalink

And a thousand curses on the Gerson Institute as they crawl out from under the wreckage. And shame on all their mealy mouthed apologists.

By Charlotte (not verified) on 06 Mar 2015 #permalink

keeping her cancer at bay
She discontinued GT 3 years ago

It's worth emphasising that after all the talk of "curing cancer", the Gerson apologists perform the classic bait-and-switch; it turns out that in fact all they are offering is a delay of cancer (and only as long as you maintain the special diet and enemas).

By herr doktor bimler (not verified) on 06 Mar 2015 #permalink

This is chilling and heartbreaking. I am reminded of the thing I found most haunting about Penelope dingle's story - that after finally having emergancy surgery she asked someone (possibly one of her sisters) "Have I killed myself?". (I hope the answer was that the homeopath did it).
The cases aren't strictly comparable because PD's cancer was highly treatable, but the tragedy of having one's misguided faith in spurious " treatments" shattered is awful in both cases.

After seeing the "before" photos of the type of tumor in question,and the location of same,I can see why such a radical amputation would be necessary.But really,is it any worse than some loss of limbs many service men and women have had had to face?Many of whom were about the same age as Jess when they lost an arm or leg.Or what about people who have been in bad accidents and lose a limb?The "after" pictures there do not look that bad,I have seen worse.They can do incredible things with prosthetics these days.

By Roger Kulp (not verified) on 06 Mar 2015 #permalink

In an interesting development, in the last day or so another young Australian woman making big business also based on a "I cured my cancer with nutrition" story, Belle Gibson, of Healing Belle and The Whole Pantry fame - has started taking down any of her posts related to her cancer claims. Her Instagram account went private overnight. She had started to come under the scrutiny of skeptics some time ago - and has been really under the spotlight in the wake of the backlash against Jess Ainscough's misleading claims. A short over view can be found here where someone is finally putting the question out there : "Does Belle Gibson Actually Have Cancer?"…

By janerella (not verified) on 06 Mar 2015 #permalink

I agree that the images associated with this amputation are unsettling - freakish. I don't think I quite understood what Orac meant by "disfiguring" until I looked at those photos. No one in their right mind would want that to happen to them, and for a young person in particular it has to be just a hellish prospect. It's way worse than just losing an arm.

Charlotte @19

The tweet Orac posted is very telling,but not at all surprising.The Gerson Institute clearly has no shame,and wishes to distance themselves as far as possible from Ms. Ainscough,and any part they may have played in her,or her mother's death.I am surprised they didn't say something to the effect that it was Ms. Ainscough's personal choice to start the Gerson Program in the first place.

By Roger Kulp (not verified) on 06 Mar 2015 #permalink

"she could argue a doctor under the table with nothing but unbridled confidence. She believed so much in what she was doing, that she cannot be considered a fraud."

To me this is the core issue, if only because I have to deal with people like this all the time. They are human cannonballs propelled by equal parts enthusiasm and confidence and a muddle headed mix of irrelevancies and half truths. Because they don't actually understand the matter at hand, despite their convictions of expertise, they are immune to any presentation of evidence that they do not want to see - in fact they can be fiendishly clever in evading contradictory evidence, often through appeals to arrogance and condescension on the part of the expert, so that the charade continues until someone dies. Or is seriously hurt. If you then refuse to gaze upon the smoldering rubble of your beliefs and admit "I was wrong" then I have no difficulty naming you a fraud.

But the really, truly, painfully frustrating part of all this is that these people might under other circumstances be truly outstanding: kind and generous and openhearted, movers and shakers. The difference is the degree of self criticism and the refusal to allow yourself to be captured by wrong ideas that appeal to you. You must be able to let beliefs go, especially those most cherished, when they are shown to be wrong.

By Robert L Bell (not verified) on 06 Mar 2015 #permalink

I can only imagine what jess's life may have been like had she chosen amputation. I have no doubt she would have made a name for herself doing something she was passionate about no matter what it was. She clearly had the ability to inspire thousands. Thank you to family friend and orac for continuing to shed light on this tragic story

A very sad story.

What I find horrific is the way that alternative therapies promote victim blaming. As if getting cancer is solely a consequence of your own stupid behaviour and/or 'negativity'.

A friend of mine recently died of leukaemia in her 40s and it's very upsetting to see people claiming that you can prevent cancer with an 'alkaline' diet or detoxing or whatever nonsense they've come up with. Choosing whether to have treatment is a difficult enough choice and it's one that my friend struggled with. As she was offered an 80% chance of complete recovery she went through two rounds of very intense chemotherapy, radiotherapy and then stem cell transplant but still didn't make it. She was a very intelligent, grounded and resilient person but I have no doubt that others in her situation would have gone with alternative therapies in the belief that they would have been effective and never properly understood that they were signing their own death sentence.

People promoting ineffective and unscientific therapies should be publicly shamed.…

Your use of the word "choice" is at the heart of what is truly immoral and unethical about fantasy-based medicine. I just wrote a post about what you are talking about as it relates to Jessica, but sadly this is true for every person out there suckered in by woo. It is a devastating and horrifying thing to happen to cancer sufferers and we all need to openly and publicly talk about it.

I really appreciate this series of posts; I also understand how depressing it must be to write them, and then deal with all the hateful replies, so good for you, taking on a difficult job.

It's really hard to argue with people who believe they've found the One True Way (Woo), because so much of their identity is wrapped up in it, making it a personal attack on them to say "this treatment does not work". Even if you have all the proof they demand, studies do show that people prefer to believe their own reality, regardless of fact.

In other words, no-one deeply into woo has *ever* smacked their hand to their forehead and said "I can't believe I've been wrong all these years". To do so would be to admit that they have been following the wrong idea, and that is a huge blow to the ego, even more so when the person believes they're smart.

And still you fight the good fight, and deal with the people that attack you. Considering that a number of people with whom I am acquainted on Facebook have crises of self-worth when someone "un-friend"s them, the ability to deal with the stuff you've had to put up with this past week puts you in my hall of respect.

By elsworthy (not verified) on 07 Mar 2015 #permalink

In other words, no-one deeply into woo has *ever* smacked their hand to their forehead and said “I can’t believe I’ve been wrong all these years”. To do so would be to admit that they have been following the wrong idea, and that is a huge blow to the ego, even more so when the person believes they’re smart.

Actually, that's not true. There are such people. I've encountered them. But they are rare.

no-one deeply into woo has *ever* smacked their hand to their forehead and said “I can’t believe I’ve been wrong all these years”. To do so would be to admit that they have been following the wrong idea, and that is a huge blow to the ego, even more so when the person believes they’re smart.

I've changed my mind in major ways. But it doesn't make me feel stupid, it makes me feel like I'm alive. Changing your mind means you're four-dimensional; and something charging unchanged from the past into the future is really just three-dimensional.
So changing your mind is reason to feel good about yourself.

@ elsworthy:

Take heart: occasionally, someone DOES foreswore woo and embrace reality:
- James Laidler, MD, proselytised autism woo and submitted his children to dietary woo BUT he changed when he saw that the kids ate forbidden food and didn't misbehave or deteriorate.
- one of Orac's minions also saw the light and now forever sings its praise. Pareidolius- take a bow. Or have a drink.

By Denice Walter (not verified) on 07 Mar 2015 #permalink

I can only imagine what jess’s life may have been like had she chosen amputation. I have no doubt she would have made a name for herself doing something she was passionate about no matter what it was. She clearly had the ability to inspire thousands. Thank you to family friend and orac for continuing to shed light on this tragic story

While reading the comments, I ended up imagining a nightmare. At first, I imagined her being made an unperson among the alties, but that would be a mercy in comparison to my second thought. She was a beautiful woman, and if she took the disfiguring surgery, the alties would spout all sorts of misogyny and ableism at her for being a woman who chose life over beauty. They would use her image to scare people away from effective medicine, as if amputation was typical for all forms of cancer surgery. All to make their quackery more appealing by implying that there are no trade offs or bad luck. Meanwhile, real doctors are at a disadvantage because they're obligated to present the unpleasant reality and help patients weigh such difficult decisions, rather than manufacture false hope.

By Bronze Dog (not verified) on 08 Mar 2015 #permalink

It's reassuring to know that some change their minds. I deeply hate it when people I know start telling me about this or that alt therapy, and I've had people get mad at me when I write about stuff like that (someone once tried to tell me that naturopaths were legit).

By elsworthy (not verified) on 08 Mar 2015 #permalink

Let me recommend a book, Autobiography of a Face by Lucy Grealy -- the author lost a large piece of her jaw to cancer as a child back in the seventies. She does a wonderful job of describing how her family was not very good at dealing with the emotional stress of her treatment, how she underwent multiple attempts at reconstructive surgery, and how she ultimately successfully accepted her not-"normal" face as a young adult.

(I add that although Autobiography of a Face ends on a positive note, Grealy's life continued to be hard... insightful book though.)

People can and do triumph after these extreme surgeries. When my father was in his late 50s he lost a leg and half his pelvis to cancer. In the 22 years he lived afterwards he went back to work, kept up with his volunteer activities, travelled domestically and overseas, and lived a normal life. It wasn't all sunshine and roses- phantom pains laid him low at times- but he did have a ggod life.

As others have already said, sure it would be a Sophie's choice kind of decision to have to make (if we ignore the false 3rd choice of undergoing that she actually "chose")....horrible surgery with a chance at extended life, or die a horrible death long before your time.

However, the world is full of stories...and we know how Alties love their stories...of people who overcame accidents or birth defects, who go on to have rewarding and full lives.

Given the loss of an arm, the most pop culture reference is Bethany Hamilton, who lost an arm to to a tiger shark, and recently placed 3rd in The Amazing Race.

By NewcoasterMD (not verified) on 08 Mar 2015 #permalink

Belle Gibson has deleted the references to her cancer on her facebook page now that people have started questioning her story. Also, her company has been accused of taking funds that they ostensibly raised for charity.

Orac, I know you are busy but I just need a brief answer: Belle Gibson claims that her brain cancer spread to her spleen, blood, liver, and uterus. Can that happen? Or if it can happen, how common is it.


Do you know about Kit Campbell

And Jennifer Daniels?

Jennifer Daniels, MD, discovered that American slaves had a secret remedy that kept them free of diseases: a teaspoon of turpentine mixed with a teaspoon of white sugar, taken for short periods several times each year. She adopted this as a successful Candida therapy: Slowly pour a teaspoon of turpentine over sugar cubes or a rounded teaspoon of white sugar to soak it all up. Then chew the cubes or soaked sugar and wash the mixture down with water. Dr Daniels generally recommends doing this twice a week for several weeks, but initially daily with long-term Candida. Continue until the problem is fixed - which can happen surprisingly quickly. On Internet forums, I found some testimonials showing that this therapy indeed worked for these people.

Dr Daniels states that before starting turpentine therapy it is essential to prepare by drinking lots of water, adopting a suitable anti-Candida diet and cleaning the bowel. At this stage, it is necessary to have three daily bowel movements, otherwise the pathogens may get into the blood. She also believes that the use of sugar in this case is beneficial in stopping the sugar craving so common with Candida and in attracting the Candida to the "poison".

I tried this out with Diggers Pure Gum Turpentine, which is available in Australia. When taking a teaspoon of it on a cube of sugar, I was surprised how pleasant it tasted, just like a pine-flavoured lolly. However, I now believe that instead of using sugar, it is better to take gum turpentine mixed with an equal amount or more of either paraffin oil or olive oil. Gum turpentine has a much stronger effect than kerosene, and some individuals experienced temporary balance problems. I would limit the maximum dose to 1 teaspoon per day for an adult.

In her report, Dr Daniels also wrote that the first edition of The Merck Manual of appropriate and accepted treatments for recognised diseases, published in 1899, states that turpentine therapy is effective for a wide range of conditions including gonorrhoea, meningitis, arthritis, abdominal difficulties and lung disease. However, the 1999 Merck Manual just mentions the dire effects of turpentine poisoning with destruction of the kidneys and lungs [6].

Understanding The Cure-all Effect

The secret of the apparent cure-all effect of kerosene and turpentine may be understood as the reversal of the disease-causing effect of modern medicine. There is evidence that most of our modern diseases were rare in former centuries. Only relatively few people had cancer, which only occasionally happened in old age, and asthma, allergies and autoimmune diseases were rare or absent as well. All this changed after World War II with the widespread use of antibiotics. While they targeted bacteria, they encouraged the rise and spread of fungi and mycoplasmas which are at the root of most of our modern diseases.…

Here we have multiple posts suggesting an autistic teenagers and children take turpentine and kerosene,both orally and in enemas,as well as the Hulda Clark Parasite Protocol.We here at RI know Hulda well.Of course any poisoning these kids may experience as a result of either ingesting this stuff,is written off as Herxheimer Reaction or "die off" of fungus and parasites.It never ends.

By Roger Kulp (not verified) on 08 Mar 2015 #permalink

To Vasha #37 &#38
I notice you reference Lucy Greely.
I suggest you read the companion book to her Autobiography- Truth and Beauty by Ann Patchett. This was written from the perspective of a close friend of Greely's and details her slide into depression and drug addiction due inpart to the feeling she could not be loved, due to her appearance. The two books read in tandem give a very different picture to what you will glean from the autobiography alone.

I really enjoy reading this blog, and walk in both worlds (part science and part "woo"). While my profession as a statistician and data miner is firmly rooted in science I have also spent time immersed in transpersonal psychology groups, deep meditation and the exploration of nutrition to improve my well-being which have impacted my life favorably.

I think it is tragic that people will eschew medical treatment for some seemingly bizarre illogical reasons (i.e. drs are agents of big pharma, drugs and vaccines are littered with poisons and toxins, medical treatment compromises the immune system etc).

For my family and I, our first line of defense is our local doctor and or the hospital and then specialists as needed. Our childen are fully vaccinated and we are a family that subscribes to and believes in conventional medical treatment in all our choices. For example, we have a sound and well organised asthma plan that involves ventolin etc and guidelines developed by specialists for this purpose and dont rely on anything non-medical to manage their asthma.

The alternative community that I have been apart of for many years are regular meditators, focus on their health and personal growth but none to my knowledge abandon medical treatment. I think that the media pick up on sensationalist extremes and potentially mis-represent people who do subscribe to a multi-faceted approach to health.

I think that a very happy medium is a situation where a dr and patient work together to do everything they can to optimise the treatment plan agreed to (NB without stuffing up the medical treatment). I worked with my local dr doing monthly blood tests, intermittent scans etc in my attempt to reverse severely elevated liver enzymes (cause was uknown) and no medical treatment was available. I opened a can of woo on this issue and monitored the impact scientifically. Varied diet interventions (including intermittent fasting), body meditations, hands on healing, exercise, vegetable juicing etc. After 3 months of random fluctuations, the enzymes trended to normal over 6 months and have remained that way for a year.

It is feasible that as my enzymes returned to normal over time, this occurred as a result of nothing I did, or even worse, what I did slowed or inhibited this natural trend to normal. Given what I did, it would be impossible to isolate a single variable that might have caused the impact. With no known theory or explanation for the reasons for the change (apart from woo), the ground upon which to draw any inferences becomes untenable even with an (n=1) case study.

I think that to tar everyone who subscribes to alternative approaches to health with the same brush (woo) is counter-productive and may in some instances be an unfair representation.

The group of paranoid and seemingly highly influential internet quacks need to be brought to account when they tell people to avoid what could keep them alive. It is one thing to make these choices for yourself, but to put others lives at risk is unethical.


I have also spent time immersed in transpersonal psychology groups, deep meditation and the exploration of nutrition to improve my well-being which have impacted my life favorably.

It would be sad if someone felt that being "sciencey" precluded meditating or exploring the influence of food on their state of mind. That would be like living inside a box made out of prejudice.
Just because skeptics talk about "woo" doesn't mean they're that prejudiced. Some probably are, but not all.
I went through profound psychological changes by changing my diet, starting in 2003. I went gluten-free, and it turned out that gluten and other foods I'd become sensitive to, had been affecting me psychologically and physically, a LOT. I probably have celiac disease. I'm sure that it was quitting the foods that caused the psychological changes, because trying the foods again caused the psychological effects to return (as well as making me quite sick).
Respecting what we don't know - refraining from filling the empty space of what we don't know with belief - is very important. And finding that food could have such profound psychological effects, gave me more appreciation for how little we know.
The Facebook Skepti-Forums are pretty good about restraining the skeptics from being red in tooth and claw. The moderators stamp out Snark.


I don’t know any doctors who object to healthy eating, although most would probably say that eating veggies is more than enough and you lose a lot of fiber by juicing them. Nor do I know any doctors who object to meditation. These things are not “woo” and as regular readers know, it is common practice for the alties to co-opt them as if they were when taking their surveys or defining their “treatments”. You seem to be aware that your improvement was likely the normal course of events, but you also seem committed to feeling that your practices did no harm; but the thing is that you DO see doctors and DO follow their advice, nor do you delve deep into the woo, so I don’t think you really represent any “happy medium”, but rather you simply employ a bit of spirituality to your lifestyle, as do many of us (not me, to be clear) do and that is not the problem we are here to fight.

By darwinslapdog (not verified) on 10 Mar 2015 #permalink

I left a comment on her site saying that she needed to be truthful about this, for all the people that follow her that are sick and vulnerable, and the charities involved, ... not only is the post removed but I'm blocked

By Ally Scott (not verified) on 10 Mar 2015 #permalink

This is a sensitive topic for people who have loved ones in the same predicament. In truth amputation is the best option in a case like this, but people are stubborn and tend to jump at alternative medication because of the fact that with alternative medicine you have the option of keeping your limbs intact. That sounds like a great idea in the short run but the procedure is only temporary in my books because it doesn't completely remove the cancer. Doctors need to start telling people the hard truth and reccomend the best possible options rather than alternatives because by now I'm sure that everyone has a solid understanding of human nature.

Trina, as a long-term cancer survivor who lives with most of the problems referenced in that post, all I can say is I would rather be alive in all my battered glory, than dead.

As no alternative method has been shown to have any impact on cancer, there is no other choice.

This week we have witnessed the painful unraveling in the worldwide media of false cancer cure claims with the unfortunate but inevitable death of Jess Ainscough - alias The Wellness Warrior who recently died from her advanced cancer. Her mother died in 2014, also as a result of not seeking conventional treatment for her breast cancer. Then, another story appeared in popular media as Whole Pantry app developer, author and cancer entrepreneur Belle Gibson’s story of cancer recovery using diet and all things natural; was exposed as a an uncorroborated story combined with a series of impossible medical cancer scenarios. I suspect there will be more people exposed for fraudulent natural cancer cure claims over the coming weeks as the lies are unraveled by media who have at last seen the significance and impact of false cancer "cure" claims. I have no idea about the motivations or maybe even pathology of Belle Gibson, but perhaps we should not be so harsh with the young and impressionable Jess Ainscough because there is more to the Jess Ainscough story than meets the eye. As a result of a story about a famous patient’s cancer cure, published in a popular medical Journal in 2008; cancer patients like Jess Ainscough and millions of others have pursued this natural cure path based on what appears to be a credible and certified account of a natural recovery from cancer. The famous patient’s story appeared under the title “True Stories” in this reputable medical journal! The same medical journal had, in 1978 published another erroneous account of the same patient’s natural cancer recovery. “Regression of Osteogenic Sarcoma Metastases Associated with Intensive Meditation” (October 21 1978). Of course if natural cures get published in credible medical journals – then patients are sure to believe - it provides a massive stamp of authenticity. However, the famous patient eventually admitted to errors in both the 1978 Medical journal account and the 2008 medical journal story that was authored by his wife and a professor co-worker. The same paper was peer reviewed by the professor’s wife - but conflicts of interest were not disclosed. When challenged, the patient’s blog reflected that there were errors – but to this day they have not been officially corrected in the medical journal in question, apart from my attempts in September 2010 in a published "errors and corrections" letter to the journal editor. It is very significant that these two medical journal articles, are heavily quoted from and remain dangerously available in the public domain reproduced in the book You Can Conquer Cancer, (over 250,000 sold and translated into fourteen languages) which will continue to fuel the alt med myths that become beliefs then folklore. Thanks to these and similar publications, there will be many more casualties like Jess Ainscough and her mother who believe what they read. But really, is it their fault? Can we expect patients to question the credibility that a reputable medical journal brings to a story that is the source of the alt med natural cancer recovery movement? Until refuted/rescinded by higher sources than I can muster, it will unfortunately, continue to influence.

By Grace Gawler (not verified) on 11 Mar 2015 #permalink

I think it is fairly telling that this post, in such total contrast to the first has been very nearly ignored by her avenging acolytes. 54 comments - 55 with mine - here so far as compared to nearly a 1000 and counting on the other!

Is it possibly because the 'family friend' is so damn hard to refute as a truthful view behind the curtain? If nothing else I am very surprised no one has attempted to impugn its validity, contrasting as it does so utterly with Wellness Warrior's brand.

By Gemman Aster (not verified) on 27 Mar 2015 #permalink

That's a pretty amusing pingback.

my name is Stephanie Phillips, I am writing you because I need your help getting awareness for a local member of the community. My dear friend and co-worker Raquel Ndzeidze is battling with a rare form of Ovarian Cancer. She has struggled with this form of cancer since she was 23 years old and now she is 32 years old. She is an Oregonian and lives here in Corvallis. Raquel first was diagnosed with ovarian cancer when he was 23 years old and had surgery to remove a 14lb cancer tumor. She recovered and was in remission for many years and the cancer came back a couple of times. She has had a couple of surgeries to remove the cancer but since her cancer is so rare, there is no treatment options in the United States. She has been trying to do a therapy known as the Gerson Therapy that has helped her significantly. With the Gerson Therapy she has been able to change her diet, change her lifestyle, and become healthier. But the Gerson Therapy isn't supported in the United States so she isn't able tot get the full treatment she needs.Raquel has a rare form of cancer, so rare in fact that there are currently no treatments options in the United States besides surgery, which she has had. Chemotherapy and radiation do not work on this rare type of cancer. She has searched worldwide and found two clinics that can give her lifesaving treatment; one is in Europe the other in Mexico. Raquel will need to be in at the clinic for 8 weeks and her insurance will NOT pay for this treatment. Total cost of this treatment is $65,000 and the full amount has to be paid before she can receive this treatment. The treatment includes insulin potential therapy, metabolic iv therapies, immune vaccine therapies, and most importantly the Rigvir virotherapy program that is only offered in two hospitals in the world. These treatments are not offered in the US. She has a Go Fund Me page set up by her sister to help her fund her total cost for the treatment and the trip. Raquel is from Lebanon, lives in Corvallis, and graduated from OSU. She is a wonderful person who would help anyone. Her positive spirit and thoughts keep her fighting forward, with everything she has going on, she does not let her cancer stop her or slow her down. Please help in anyway you can.

I am asking to see if there is anyway the Holistic Ingredient Blog can get her story out there to help raise funds for her treatment. Please let me now if you need any other information or anything, I am a dear friend who is trying to help Raquel in anyway I can. Thank you for your time and efforts, it is truly appreciated.

By stephanie phillips (not verified) on 22 May 2015 #permalink