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.