A cancer surgeon on Jess Ainscough: "Deaths like this sadden me."

A medical perspective on the passing of Jess Ainscough.

As we reported here yesterday, 30 year old Jess Ainscough, known as the “Wellness Warrior” has died from cancer. After being diagnosed with a rare form of cancer aged 22, she chose to reject all forms of traditional medicine and embark upon an evangelical path of alternate treatments – none of which had any scientific evidence of success. She started a Wellness Warrior website, wrote books and became very vocally outspoken against many forms of traditional medicine including cancer treatment and even vaccination.

You can read about that here, including the devastating death of her mother only 14 months ago after she was diagnosed with breast cancer and similarly refused all traditional medicine. Of course, Jess and her mother had every right to choose how to treat their illnesses. Where this becomes more complex and troubling is the evangelism with which Jess took to her alternate treatment while projecting an image that was the picture of health.  She amassed tens of thousands of followers, sold books and products and influenced many many people.

A young woman has died and that is a tragedy no matter how or why it happened. However by living her life as a crusader against traditional medicine and advocate for ‘natural’ cancer treatment, it’s impossible (and some would say irresponsible) to ignore the circumstances surrounding Jess Ainscough’s death.

After much discussion among the Mamamia team (some of whom knew Jess or had friends who knew her), we believe it’s possible to be sensitive and respectful while reporting some facts. Many Mamamia readers have asked questions about the reasons for Jess’s death and the progression of her cancer.

We asked surgical oncologist, Dr David Gorski (who writes about science-based medicine under the name Orac), to explain to us calmly and with sensitivity, the medical view of the radically alternate route Jess (and her mother) took and whether he believes this may have cost them heir lives.

For those who consider it is inappropriate to discuss such things so soon after her death, you may not want to read on.

However, Jess was hugely influential in her beliefs and had a massive following of impressionable and vulnerable people. Her death is a terrible tragedy but information is crucial for those who may be following her same path. We hope that explains our decision to publish this post.

Here is what Dr Gorski had to say:

Two months ago, I took note of a somewhat cryptic blog post by a young woman named Jess Ainscough. In Australia and much of the world, Ainscough was known as the Wellness Warrior. She was a young woman who developed an epithelioid sarcoma in 2008 and ended up choosing “natural healing” to treat her cancer.

Among the “natural healing” modalities touted by the Wellness Warrior included that “quackery of quackeries”, the Gerson protocol, complete with coffee enemas.

Read more: The Wellness Warrior, Jess Ainscough has died, aged 30.

She even did videos explaining how to administer coffee enemas and posted them on YouTube, although that video is now private. In fact, most of her videos appear to have disappeared from her YouTube channel as private, and there is nothing but a notice on her website announcing this:

Sadly, on Thursday, Jess Ainscough passed away. There’s no information on what took her life, but it’s hard not to assume that it was her cancer. Given this development, Ainscough’s words from two months ago make more sense:

When I left you back in June to begin a period of self-care hibernation, my plan was to get my health back in tip top shape and then spend some time creating some awesome new stuff for you. The reality, however, is that I’ve spent the whole time focused on my health. For the last few months, I’ve been pretty much bedridden. Let me fill you in on what’s been going on with me …

This year absolutely brought me to my knees. I’ve been challenged, frightened, and cracked open in ways I never had before. After my mum died at the end of last year, my heart was shattered and it’s still in a million pieces. I had no idea how to function without her, and it turns out my body didn’t either. For the first time in my almost seven year journey with cancer, this year I’ve been really unwell. I’ve lived with cancer since 2008 and for most of those years my condition was totally stable. When my mum became really ill, my cancer started to become aggressive again. After she died, things really started flaring up.

I’ve had scans to detect what’s going on in my body, and I can report that the disease is still contained to my left arm and shoulder, however I do have a big fungating tumour mass in that shoulder that’s causing me dramas. Over 10 months of non-stop bleeding from the armpit has rendered me really weak (and uncomfortable) and as a result I’ve had no choice but to stop absolutely everything and rest. Tallon, my freaking hero, has had to step up and help me with everything from making food and juices, doing all of our housework and laundry to doing my hair.

At the time, I noted that Ainscough’s health had clearly taken a turn for the worse and couldn’t help but wonder whether she was doing even worse than she was letting on.

Indeed, at the time, her admission seemed rather amazing, given how jealously she had guarded any hint that she wasn’t doing very well and how careful she was to hide her arm in publicity photos.

Of course, this being the age of smartphone cameras, where almost everyone has a camera on herself at nearly all times, she couldn’t always succeed, and photos of her showing how bad her arm was did appear. I also speculated at the time that maybe Ainscough had finally decided to return to “conventional” treatment, possibly even an amputation.

In retrospect, I now have to wonder whether when Ainscough posted this she knew that she was dying and that nothing more could be done. For example:

I believe that as a result of my willingness to stop controlling my healing path and surrender to whatever the universe has up its sleeves to help me, I’ve attracted the most amazing healing team. I’m working with an oncologist who is kind, caring and non-judgemental – completely unlike any of the specialists I worked with in the early days of my journey. When we are open and in a state of surrender, the right people/situations/tools will appear. Final decisions and plans are now in process and I’ll keep you in the loop in the new year.

This post was so sad then. It’s even sadder now.

I first encountered the Wellness Warrior a year and a half ago when her mother, Sharyn Ainscough, died tragically of breast cancer. Her mother, it turns out, had treated her breast cancer with the same sorts of useless treatments as her daughter treated her sarcoma. Now, I can understand why Jess would choose “woo”.

She was unfortunate enough to develop a cancer that was, paradoxically, both very nasty and very indolent. (After all, she survived seven years with it.) Moreover, because her tumor involved her shoulder, the first line treatment recommended consisted of a very disfiguring amputation that sounded like a fore-quarter amputation. It’s an amputation that involves removing not just the arm, but removing the entire shoulder joint and the shoulder blade.

It would have left her not just without an arm, but without a shoulder as well. It’s a seldom-performed operation these days (indeed, I’ve never done one or even seen one performed in my entire career stretching back to my residency beginning in the late 1980s), and with good reason. Still, sometimes it is necessary. It’s hard not to feel for Ainscough, who, at age 22 was facing such an awful choice.

Ainscough actually reported herself to have steeled herself up to undergo the surgery, but apparently her doctors came to her at the last minute with an alternative, which was to do isolated limb perfusion.

Basically, this is a technique sometimes used for soft tissue sarcomas of the extremity or multifocal melanoma that can’t be resected without amputation to try to destroy the tumor. As its name implies, isolated limb perfusion involves isolating the limb from the body’s circulation and infusing it with very (and I do mean very) high doses of chemotherapy. That’s what necessitates the isolation of the limb’s circulation; the dose of chemotherapy is so high that if it leaked back into the rest of the circulation the consequences could be disastrous.

Isolated limb perfusion can often cause seemingly near miraculous results, and apparently that was the case for Ainscough. Unfortunately, tumors tend to recur, and that’s exactly what happened to Ainscough about a year later, which led to the doctors recommending an amputation of her arm at the shoulder again.

It was at that point that Ainscough rejected that option and was reborn as the Wellness Warrior.

Over the years, she became quite the media figure in Australia, based on her many advantages for a media career. She was young. She was telegenic. She was very likable and soon became very media-savvy.

Over seven years, she built up an impressive empire of “natural healing” modalities, enabled, of course, by credulous reporting. She wrote books. She appeared on television. She sold cookbooks, cooking supplies, and various other implements necessary for a “natural” lifestyle.

She promoted, as I said, that “cancer quackeries of cancer quackeries”, the Gerson therapy. Indeed, she even listed the various supplements she took as part of the Gerson therapy (and in addition to the at least daily coffee enemas), which she described thusly:

Some of you might think the list is a bit extreme, but I assure you that it is totally manageable. It’s nowhere near as much of a pain in the ass to get through as the medicine cabinet full of pills and potions I was taking prior to Gerson. I swear, as soon as we heard that a supplement had anti-cancer properties, I was all over it. I’ve taken everything from sea cucumbers to bovine cartilage. This list is like a trip to the beach in comparison.

The supplements a Gerson patient must take generally varies to suit the individual. But all the medications are designed to support the diet therapy by increasing the energy capacity of the cell and by increasing the rate of detoxification.

She also advocated eating clay to “detoxify” herself:

When we eat clay, the positively charged toxins are attracted by the negatively charged edges of the clay mineral. An exchange reaction occurs where the clay swaps its ions for those of the other substance. Electrically satisfied, it holds the toxin in suspension until the body can eliminate both.

You get the idea. Jess Ainscough was a seemingly unending fountain of “woo”, making Food Babe-like appeals to the “natural” over the “synthetic” and promoting her version of “wellness.”

Meanwhile, over the last year or two, her condition was clearly deteriorating.

So what happened?

As I explained before, epithelioid sarcoma is a rare sarcoma, with an incidence on the order of 0.1 to 0.4 per million. It’s primarily a tumor of young adults, and it nearly always appears on the upper extremities, and wide surgical excision is the only known effective treatment.

It also tends to be indolent as well. Its ten year survival overall is on the order of 61%, and for patients between 17 and 30 years (i.e., patients like Jessica Ainscough), it’s approximately 72%. Of course, that is with treatment with surgery; without surgery, five year survival is 35% and ten year survival is 33%.

Sadly, Jess Ainscough’s survival of seven years with her disease in essence untreated is thus within the expected range of survival time based on her disease.

Read more: This is what ovarian cancer looks like. Being aware could save your life.

I have no idea what finally took her life. Overall, it must have been the cancer, of course.

Given her description of frequent bleeding from her tumor mass to the point where she was anemic suggested to me that the tumor was fungating, eating through the skin.

At the time, she said her scans indicated that the cancer hadn’t spread beyond the arm, but that didn’t mean it still couldn’t kill her. I’d suspect a combination of unrelenting chronic blood loss and perhaps necrotic tumor becoming infected and leading to sepsis.

If such sepsis were not recognized and treated promptly it could certainly have killed her in her weakened state. But this is just speculation, an educated guess.

I have no idea what the immediate cause of Jess Ainscough’s death was. Whatever her immediate cause of death was, though, it was almost certainly the cancer that killed her.

Cancer deaths like this always sadden me.

Jess Ainscough had a shot, one shot. She didn’t take it.

What saddens me even more is that I can understand why she didn’t take it, as, through a horrible quirk of fate, her one shot involved incredibly disfiguring surgery and the loss of her arm.

Still, I wish she had taken it and hadn’t instead decided to become an icon of “natural healing.” (If she had, there’s about a 70% chance she’d still be alive today.)

In her role as the Wellness Warrior, and in her promotion of Gerson “quackery”, Ainscough, with the noblest of motivations in the beginning, did harm and likely led some cancer patients down the path of “quackery” and preventable death.

In this, Jess and Sharyn Ainscough were also just as much victims as any other cancer patient who chooses alternative medicine “quackery”. Unfortunately, she also promoted that same “quackery”, which made them complicit as well. Being simultaneously a victim and an enabler or promoter is frequently the case with believers in alt-med cancer “cures.”

All the more sad.

As outraged as we might have been over Ainscough’s promotion of the Gerson protocol in life, as we mourn, we should also remember that Jess Ainscough was also a victim of the very pseudoscience that she promoted.

Now that she is gone, what I want to know is this: Who are the “quacks” who enabled her and egged her on? Who are the “quacks” who conned her into believing that Gerson therapy would save her life? Who are the “quacks” whose influence led her to become the Wellness Warrior in the first place?

They helped create the Wellness Warrior, and Jess Ainscough has finally paid the price.

This article originally appeared on Science Blogs and is republished here with full permission.