Jess Ainscough finally admits her condition is deteriorating

TheWellnessWarriorAustralia1

Not being Australian and, for some reason, never having encountered her promotion of “natural health” online before, I first encountered Jessica Ainscough, also known as “The Wellness Warrior” over a year ago when I learned that her mother Sharyn Ainscough had died of breast cancer. Her mother, it turns out, had rejected conventional treatment for her breast cancer and chosen instead the quackery known as Gerson therapy. It’s a treatment regimen based on long-discredited view of how cancer forms and that requires the consumption of boatloads of supplements and the administration multiple times a day of coffee enemas. Unfortunately, for a long time Jess herself has been on the same path, apparently inspired by her mother’s tendency for woo, a tendency that ultimately led to her death.

Jess, you see, has a rare cancer known as epithelioid sarcoma. To recap, in 2008, lumps started popping up on her left arm and hand, and she had them biopsied. Make no mistake, this is a rare cancer; recent figures for incidence are on the order of 0.1 to 0.4 per million. It’s a tumor of young adults, which fits with Ainscough’s presentation, and it nearly always appears on the upper extremities. Wide excision is the only effective treatment. Unfortunately, given the extent and location of Ainscough’s lesions, the only potentially curative therapy at the time would have been to have her arm amputated at the shoulder, a procedure that sounded to me like a forequarter amputation. It’s a horrible operation, one that’s seldom done any more (thankfully). In fact, I’ve never done one or even seen one done, and I’m glad about that.

So, when Ainscough was diagnosed with epithelioid sarcoma of her arm, it’s not surprising that she balked at such a disfiguring operation to cure it. Indeed, reading her story, I felt a lot of sympathy for her. She was only 22, with her whole life ahead of her to look forward to. So she tried alternatives that were part of science-based medicine, such as isolated limb perfusion, a technique in which the limb is temporarily isolated from the rest of the circulation and perfusing it with chemotherapy solution. It’s a technique that is sometimes used to treat melanomas of limbs or, of course, other sarcomas. It worked, but only temporarily. Her tumors recurred about a year later. So doctors recommended amputation again, and it was at this point that Ainscough rejected conventional medicine in favor of the Gerson protocol and The Wellness Warrior was born.

As is so often the case when a person chooses quackery instead of effective medicine and does well, at least initially, Ainscough attributed her good fortune to all the “natural” treatments and dietary modifications that she adopted. Indeed, she went further. She made a whole career out of it as The Wellness Warrior, aided and abetted by credulous reporting. Meanwhile, she’s done pretty well, but that’s not particularly surprising. Epithelioid sarcoma is not among the most aggressive of sarcomas. 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%. This implies that there is a subset of these cancers that is fairly indolent, as the vast majority of patients who are going to die of their disease do so within five years, with additional deaths after five years being relatively few. What this further implies, given that Ainscough never underwent surgery, is that she was lucky enough to be in this group. In other words, she’s another case in which the quackery didn’t save her; she was fortunate enough to have slowly progressing disease. The first time I encountered Ainscough, I was reluctantly forced to predict that her sarcoma would almost certainly get her in the end. As I pointed out, it could take years, but it would happen, as Ainscough gave up her one, best chance, of survival a few years ago. I can totally understand why her fear led her to make that choice, but there was a price to be paid.

Several people had noticed over the last year that Ainscough had been hiding her affected arm and that, in photos in which she couldn’t totally hide it, her arm was looking worse. Meanwhile, on her Facebook page, any photos of her seemed staged or cropped specifically to hide her left arm. I’ve revealed to you on many occasions that I subscribe to a lot of crank and quack e-mail lists, the better to provide me with blog fodder. (The things I do for you.) Well, I’m on Ainscough’s list, too, and I just received a depressing and disturbing update:

Wow, it’s been so long between blog posts that I’m almost feeling a little shy. My gosh, I’ve missed you though. It was definitely not my intention to take so much time off. 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’m truly saddened to hear this. The question that first came to my mind when i read this was this: What does she mean? How bad is it? It’s pretty bad:

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.

So, in other words, Ainscough has the sarcoma equivalent of carcinoma en cuirasse, tumor that’s eroded through the skin and has started to bleed. This is bad. Really bad, given that this tumor mass at the shoulder is apparently bleeding enough to render Ainscough weak, from which I conclude that she’s losing enough blood to render her symptomatically anemic. It’s not unreasonable to assume that Ainscough is minimizing the effect of these tumors on her ability to function in daily life. After all, she’s built her entire reputation on being the “Wellness Warrior.” To admit that all the “natural” dietary alterations and treatments that she had relied on for so many years have come up empty can’t be easy. Even worse, “The Wellness Warrior” lifestyle is more than something Ainscough had relied on. It was her brand, a brand she sold to thousands through books advocating Gerson therapy and various other woo, speaking appearances, and media interviews. Those of us who were paying attention had noticed over the last year or so that those appearances were more and more carefully managed to hide Ainscough’s left arm, as I pointed out in January. Now we know why.

So now that it’s clear to everyone that Ainscough’s woo isn’t working, what is she going to do about it? To be honest, I’m not entirely clear that there’s much that can be done about it any more. Assuming Ainscough’s report is accurate and the tumors are still confined to the arm and shoulder, it’s still possible that a forequarter amputation could help her. Sure, it’s a radical and disfiguring operation that no one wants to undertake, but if the tumor hasn’t spread beyond her shoulder, there’s still a chance an amputation might safe her life. Alternatively, it’s often possible to palliate fungating tumors with radiation therapy. Is Ainscough considering either possibility?

You know the answer. She’s been staying in bed, which is reasonable (albeit seemingly in conflict with her photos on Facebook over the last couple of months showing her out with her friends), during which time she’s been feeling all sorts of sad emotions, which is completely understandable. She’s been lurching from anger to sadness, which is a completely normal reaction to such a setback. Unfortunately, it isn’t clear whether she’s been been moving forward towards making a decision regarding treatment options that might actually help (or at least palliate) her condition:

I’ve also spent my time doing lots of research into treatment options. I’ve been speaking to doctors, healers, and specialists and I’ve been completely opening myself up to attracting the right people who will help me heal – whether they are from the natural medicine world or conventional. My beliefs have been completely shaken up and I’ve had to drop any remnants of fear and ego that were preventing me from exploring these options sooner. I’ve discovered that when we completely close ourselves off from something, the universe will sure enough give us an experience that makes us see that everything has a place. It’s been completely eye-opening and very, very humbling.

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.

Remember how I discussed how The Secret is the central dogma of alternative medicine? This sure sounds rather Secret-like, except that, instead of wanting something badly enough and thus bending the universe to bring it to you, you have to basically give up and surrender to whatever you think the universe wants to bring to you. Either way, it’s magical thinking in which the universe will always provide you what you need. It won’t.

Actually, re-reading this, I see reason for hope. I get the feeling that Ainscough has made a major decision and is setting her “Wellness Warrior” followers up for it. Note how she says she’s working with a “non-judgmental” oncologist, not an alternative medicine practitioner. This suggests to me that she might finally be ready to take some form of conventional treatment again, as long as she’s allowed to do her woo alongside conventional medicine. In fact, I have to wonder if she’s finally decided to undergo forequarter amputation, giving the seeming finality of her announcement. Or maybe she’s decided to undergo chemotherapy to try to shrink the masses again, followed by forequarter amputation. I hope so. As horrible as that operation is, there are reconstructive surgical options to make the end result ultimately less so.

As for the reason for the tone of the announcement, sure Ainscough knows that such a decision, if indeed she has made such a decision, would be profoundly disturbing to a lot of her followers, to whom she had previously preached the message that all the quackery (like the Gerson therapy) that she had been following, along with dietary modifications and healthy eating, would keep her cancer at bay indefinitely. On the other hand, perhaps she doesn’t really have to worry. Judging from the overwhelmingly positive comments after her announcement, a few of whom appear to have guess what I guessed, namely that she’s decided to “go conventional medicine” again, I doubt she has much to worry about, although there are comments with advice ranging from suggesting that it’s necessary to do Gerson every day for the rest of your life to other quackery like myofascial release, emotional freedom technique, low dose naltrexone, and the like.

I sincerely hope Ainscough has chosen conventional treatment of some sort. If she hasn’t, I can’t help but foresee a slow, lingering, unpleasant death for her, a continuation of the process that’s brought her to this point now. Being a cancer surgeon, I just can’t stand to see anyone suffer like that. It’s true that it might now be too late, that Ainscough squandered her one best chance at long term survival back in 2008 when she refused surgery, but at the very least there are palliative options for her. And who knows? It might not be too late. At least, I certainly hope it isn’t. I hate to see a bright, intelligent young adult cut down in her prime, but I hate it even more when it’s as a result of choosing quackery over medicine. That’s why I’m really hoping that this isn’t just a prelude to choosing a new form of quackery and instead is Ainscough preparing her followers for a decision to turn back to medicine.

ADDENDUM:

As pointed out in a comment below, already there are comments to Ainscough basically telling her she wasn’t doing Gerson therapy “right” and that’s why she’s suffering now. For example:

hi jess. i’ve followed you for several years and i’ve wondered if your cancer would get worse – based on what i saw you doing with your diet in particular. i’m gonna be honest with you with my only intention being to help you. everybody is entitled to their opinion based on their experience. i’ve always wondered if you read gerson’s original book (minus what charlotte added to the book). i honestly believe that if you cut back out all animal products, all added oils and fats (including flaxseed oil which i personally consider to be one of the most toxic of all oils) and most of the vitamin supplements you are taking except the B12 injections and iodine which i apply only to my skin because of it’s voltility (most vitamin supplements are toxic to the sick body as gerson said in his original book – and it’s something i have found in my own illness and it’s also discussed in the book called WHOLE – by Colin T Campbell), then i think you’d find that your heath would improve again. the flaxseed oil and most of the vitamin supplements are kicking your liver and bloodstream while they’re down. it’s not just the active ingredient in synthetic vitamin supplements that’s the problem, it’s all the fillers and other crap that was made in some factory probably in china with the cheapest ingredients they could source. many, many overt fat free or low fat, high fruit (and veggie) vegans have recovered from aggressive cancers – brain cancer etc etc etc. – without the use of synthetic vitamin supplementation and added oils. admiring the likes of david wolfe and reading about all the other stuff you had in your diet told me you were off the mark a tad. also, even thinking that a higher protein and fat diet could help you with your health (when you did that experiment) also told me that somehow you’d lost your way with what is scientifically proven as a diet for health recovery (i refer to caldwell esselstyn and colin T campbell’s work). i recommend you look up megan elizabeth, fullyraw kristina, raw synergy tv and even freelee the banana girl on youtube to see how these women look amazing and have overcome health issues and have needed minimal vitamin supplementation and virtually no oils to achieve that goal. anyways, good luck with your journey. leesa

Yes, sadly Jess Ainscough can expect a lot more of this sort of thing if she continues to get worse or if she decides to “go conventional” and undertake conventional medical treatment of her cancer. On the other hand, there is also a testimonial from someone who “went conventional” after doing quackery:

Jess, I know first hand how difficult it is to go from 100% natural to being forced through the progression of the disease to use medical treatment. I felt like a failure that I didn’t cure myself when I had read the stories, listened to the ‘gurus’, had done what they said and still couldn’t stop the disease. Eventually I hated these people who I felt had sold me snake oil. My eating became very disordered and it has taken a good 18 months to find balance. I can now understand that all the advice and ideas that I was depending on to cure me probably won’t but that they are still absolutely necessary to support my body through the chemical treatments that have also worked surprisingly well. I felt like a traitor to myself the first few months of treatment. But now I embrace everything that might help. I don’t think I am saying it right (I simply wish to offer empathy) but thank you for sharing your experience and I hope you really have reached some kind of peace. It is not easy to come by after what you have been through. Have a lovely Christmas and I cannot wait to walk beside you all the way through 2015 and beyond ❤️

If Jess decides that Gerson treatment is necessary to help her deal with chemotherapy or surgery, I’d be OK with that (at least I wouldn’t object too strongly) as long as she’s using science-based medicine and Gerson therapy isn’t interfering with it.