Another irresponsible breast cancer alternative cure testimonial

It just occurred to me that Breast Cancer Awareness Month is fast approaching, not the least of which because I did a Komen event last night as one of the breast cancer experts. I sometimes wonder if I suffer from a bit of the imposter syndrome, because sixteen years on I still sometimes can't believe that I'm considered some sort of "expert" in breast cancer, much less anything else. It's not that different than when, as a freshly minted faculty member, I was sent out to our cancer center's affiliates to attend their tumor boards as the "expert" from the mother ship.

In any case, in my blogging world, Breast Cancer Awareness month not infrequently provokes a sense of trepidation. This is not because I have any objection to the event; I actually quite appreciate the attention on the disease to whose eradication I've devoted my professional career. Rather, it's because every year as October rolls around I can count on an unrelenting rush of stories about breast cancer that are either full of misinformation or promote downright quackery. Particularly irritating to me are what I like to call alternative breast cancer cure testimonials. Indeed, one of the very earliest posts I ever wrote for this blog was about just that, understanding the nature of cancer cure testimonials, using—of course—breast cancer cure testimonials as examples. Over the last decade I've written more variations on these discussions than I care to remember, and unfortunately, even after all that time, they just keep coming and coming. As repetitive as these stories can sometimes become, I feel obligated to take them on from time to time because to me it's important to explain and illustrate why they do not demonstrate that whatever quackery the patient chose instead of effective chemotherapy is not responsible for the patient's good fortune of still being alive. Also, when such women die, as many of them ultimately do, I point it out when I learn of it not out of a desire to gloat, but rather out of profound sadness and a desire to warn others. Kim Tinkham is perhaps the best example of this, a sad tale of a woman who chose Robert O. Young's quackery over effective medicine and ultimately died of her breast cancer.

So here comes another one:

A SUNSHINE Coast mum who decided to fight breast cancer without drugs is clear of the disease and about to go undergo reconstructive surgery.

Corissa Macklin-Rice underwent a double mastectomy in March last year after being diagnosed with stage three ductal carcinoma which had spread into her lymph nodes.

She chose not to have chemotherapy, radiation or the oestrogen blocker Tamoxifen after watching her mother's battle with breast cancer which ended with her death in 2011

Ms Macklin-Rice regards the conventional drugs as "poison" and chose to fight cancer by adopting an organic vegan diet and making lifestyle changes.

The Bli Bli 43-year-old said she was now clear of cancer.

I vaguely remember hearing about this case last year but for whatever reason didn't blog about it at the time. Like Jessica Ainscough, she appears to have chosen a variant of the quackery known as the Gerson protocol:

"I have anywhere up to 13 juices and five coffee enemas per day. I only eat organic food, use no chemicals and gave up my hairdressing job due to the chemical exposure."

While her decision has received strong criticism from loved ones and friends, Ms Macklin-Rice said she stood by it, feeling happier and healthier than she had in years.

"My friend told me one night that she hated me for wanting to die," she said.

"I said to her we all choose which way we will go. I believe I am choosing life."

Ms Macklin-Rice said she had heavily researched all options before making her decision.

"I personally believe that the body has the capability to heal from anything and everything naturally. It does frighten people not to have a quick cure," she said.

Thirteen juices and five coffee enemas per day? Yes, that's pretty much exactly what the Gerson protocol requires. Also, the Gerson protocol requires supplements. It's also hard here not to point out that it's impossible to "use no chemicals." If you eat and drink, you are eating and drinking chemicals. If you bathe, you are bathing in a chemical (water, or, as snarky skeptics like to call it, dihydrogen monoxide), if you breathe, you are breathing chemicals. Air is, after all, a mixture of primarily nitrogen and oxygen, with much lower amounts of carbon dioxide and other chemicals. Yes, it's a pet peeve of mine.

We also seem ideas that come to the fore time and time again in these stories and explain the human reaction to embrace woo rather than science-based medicine. Macklin-Rice saw her mother die of breast cancer four years ago. I get it. I watched my mother-in-law slowly die of breast cancer six years ago, although she never received chemotherapy after her metastatic disease was diagnosed because it was so advanced that even the most aggressive oncologist was not enthusiastic about more chemotherapy. It's easy to see how Macklin-Rice might not be able to separate the effects of her mother's growing tumor from effects of chemotherapy and therefore blame chemotherapy for her mother's death. It's a very human reaction, but it's one that drives people from indicated chemotherapy time and time again.

I realize that newspapers see women like Macklin-Rice and instead of seeing a woman being misled by quackery see a brave woman forging her own way, a human interest story, with a dash of controversy thrown in, but I detest how reporters tend to glorify such stories. I also detest how they misunderstand the nature of breast cancer treatment. Why? Well, contrary to what Macklin-Rice seems to think, it's not the alternative medicine quackery (but I repeat myself) that has kept her alive. It was the surgery. She had maximal surgery, a double mastectomy, plus removal of her lymph nodes. What does that mean?

As is usually the case with testimonials, I tried to find out as much as I could about Macklin-Rice's cancer. Reports are rather vague. We know she had involvement of her lymph nodes, but we do not know how many. We know that she had a palpable lump large enough that a mastectomy appeared to be the best treatment. That means she had at least a stage II, probably stage IIB cancer, although she might have had a stage III cancer. We do know that it's grade 3. We do not know if her tumor is estrogen receptor positive, which makes a difference. If we go to Adjuvant! Online, we can nonetheless determine what the actual effect of Macklin-Rice's choice will be if we make some reasonable assumptions. For instance, for purposes of this exercise I will assume her tumor is 3-5 cm in size and that she has 1-3 positive lymph nodes. For purposes of this exercise, I assume that Macklin-Rice is in perfect health, which seems reasonable. There is, of course, a lot of wiggle room and uncertainty give the vagueness of the information we have (for instance, if her tumor was negative for estrogen receptor, Macklin-Rice would not receive Tamoxifen), but this gives a ballpark figure:

Adjuvant! Online estimate of Ms. Macklin-Rice's chances Adjuvant! Online estimate of Ms. Macklin-Rice's chances

So there you see it. Making these assumptions, with just surgery alone, Macklin-Rice could have expected a 51% chance of being alive in ten years. Not great odds. Adding chemotherapy alone would increase her odds by around 22%. So basically, by forgoing chemotherapy, she decreased her odds of being alive in ten years by around 30%. That is typical. Chemotherapy in general increases the odds of long term survival by around 30% in breast cancer. Of course, her odds of being alive in ten years remain better than 50-50 even with just surgery. Of course, if her cancer was worse than my assumptions, the numbers get worse, but the potential benefit of chemotherapy becomes greater on an absolute basis.

Yet her story is basically an "I'm still standing" story, a triumph that she is still alive more than a year later. It's not surprising that Macklin-Rice is alive a year later; it would be, while not surprising, unusual if she were not alive a year after her surgery. This gives exactly the wrong message, namely that her choice of quackery was the right one and that she is doing well.

Sort of:

She treated a recurrence of the disease - some lumps in scar tissue - in May this year using a home-made black salve.

This is a dire sign. Local recurrences in the skin of the mastectomy flap is a poor prognostic sign; where there is one recurrence, there will usually be more. The end result can be horrific, en cuirasse disease, which can result in great pain due to huge foul, fungating, ulcerating swaths of chest wall. It's also why radiation is often recommended after mastectomy for a more locally advanced breast cancer—to prevent this very occurence. But what about getting rid of the local recurrence with black salve? I've written about black salve many times before; it's basically caustic fluid. It burns. So, instead of a clean excision of a chest wall recurrence, Macklin-Rice chose a much messier, nastier path, burning the lumps out and leaving ugly eschars. As I've put it before, black salve is cutting and burning naturally and without fine control. Sure, it can work for small skin lesions, but at what cost? I also have to wonder about the plastic surgeon willing to do Macklin-Rice's reconstruction under these conditions. Yes, plastic surgeons hate chest-wall radiation because it makes reconstruction harder and the cosmetic results less satisfying, but local recurrences in their reconstruction are an even worse outcome.

Here's what truly infuriates me about alternative medicine approaches:

Ms Macklin-Rice put the recurrence down to becoming slack with her diet, sneaking "party foods" and alcohol.

"I had got a little complacent with food so I had to get strict again," she said.

On the one hand, there is the idea of "empowerment," where the patient takes charge of her disease and is responsible for its outcome through radical diets, coffee enemas, or whatever. There is a dark side to "empowerment," however. It's a dark side discussed many times here. That's the idea that, if a cancer patient isn't doing well, if her disease recurs, it's her fault for not having adhered to the regimen of woo tightly enough, for having failed it somehow. In other words, the methods never fail; the patient does. If the cancer recurs, it's the patient's fault. So Macklin-Rice believes (apparently) that she must always adhere to a rigid vegan diet and do her Gerson therapy religiously (word choice intentional) for the rest of her life; or her cancer will return and it will have been her fault.

I don't call that "empowerment." I call that blaming the patient.

Knowing what I know about Macklin-Rice, I am not optimistic about her chances of long-term survival. I cited a roughly 50-50 chance of her living ten years based on Adjuvant! Online and optimistic assumptions, but if she has had chest wall recurrences those assumptions are far too optimistic. Macklin-Rice could conceivably beat the odds and do well indefinitely, and I hope that she does. I wouldn't bet money on it, though.

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Didn't the article say that she had Stage III disease? I also didn't see where you got that it was grade 3?

This doesn't change the overall message of the article, just trying to clarify some possible typos/oversights.

This story clearly states that she had grade 3 ductal carcinoma with lymph node involvement. That's at least stage 2.

http://www.sunshinecoastdaily.com.au/news/the-toughest-choice/2277834/

In retrospect, I see that the second story mentions that she was stage III. This actually makes the numbers worse.

The example I used in Adjuvant! Online is stage IIB (T2N1M0). I reran the numbers bumping her up to stage IIIA, and her chances don't change much. With surgery alone, her ten year survival becomes 48.9% and the benefit of chemotherapy is an increase in survival of 21.6%. If I bump her up to stage IIIB, then her ten year survival falls to 31% with surgery alone, with a chemotherapy benefit of 26.8%—an even greater benefit.

See above comment. If I have time later, I might go and do a new graph to insert, but I don't have time right now.

I think the patient-blaming is one of the ugliest things about CAM. In real medicine, yes, sometimes noncompliance is a problem. But it's not the default assumption, that is, if I complain to my doctor that a medicine didn't work, he doesn't automatically turn around and say, "Well, you must not have been taking it right."

By Young CC Prof (not verified) on 17 Sep 2015 #permalink

" home-made black salve"?

Did she get the recipe from Modern Alternative Mom?

By Denice Walter (not verified) on 17 Sep 2015 #permalink

Were "some lumps in scar tissue" ever confirmed by biopsy to be tumor recurrence? It's not uncommon for fat necrosis at or near a surgical site to simulate tumor. If the "lumps" were benign, then maybe black salve "cured" them (at the expense of further pain and scarring).

By Dangerous Bacon (not verified) on 17 Sep 2015 #permalink

There is no reasoning with a person that chooses this route. I've tried. The word "natural" is very powerful to them . Furthermore, they are totally convinced that "the cancer industry" exists only to line the pockets of Big Pharma. The charlatans out there use these arguments to great effect, lining -their- pockets.

Ultimately, they become victims that fade into the night. We rarely hear about that outcome.

black salve. ...in other words a do-it-yourself surgery . What a rugged individual! Does she make her own micro-chips too?

By DanielWainfleet (not verified) on 17 Sep 2015 #permalink

Black Salve reminds me of the scene in the movie MASH where the docs make a black capsule for a depressed (suicidal) dentist.

Macklin-Rice has sold herself a bill of goods. I fear the cost may be too high.

My sister-in-law had pancreatic at stage III when diagnosed. Did the Gerson. It was heartbreaking to see her sink, in pain and with full knowledge of what was happening. My brother-in-law, who still works for a Nature's Something Company finally said "Don't blame me." I've never told him this: I do.

By BobFromLI (not verified) on 17 Sep 2015 #permalink

Speaking about breast cancer, what do you guys think about breast cancer being linked to bovine leukemia virus? " When
the data were analyzed statistically, the odds of having breast cancer
if BLV were present were 3.1 times greater than if BLV was absent.

"This odds ratio is higher than any of the frequently publicized risk
factors for breast cancer, such as obesity, alcohol consumption and
use of post-menopausal hormones," said Buehring." Is it just a statistical coincidence? Source: EurekAlert! University of California, Berkeley report

Amine @12: I'd heard that before, from a professor at Berkeley in 2005, but I hadn't seen anything else about it recently.

I guess the question is: is this just a confounder where the actual mechanism of action is totally unrelated, or is there a likely mechanism of action?

(My favorite confounder: coffee is linked to cancer, because smokers drink a lot of coffee. The smoking is what's actually linked to cancer (and a number of other things) and coffee is just along for the ride.)

By JustaTech (not verified) on 17 Sep 2015 #permalink

Sorry if this is a digression, but it appears that Trump flew the anti-vax flag at last night's Republican debate. New York Times story here:

http://www.nytimes.com/2015/09/18/health/republican-presidential-debate…

Quote: "This time, it was Donald J. Trump who vigorously asserted a connection between vaccines and autism, telling an emotional story of an employee whose “beautiful” baby fell ill with a fever after having a vaccine and, he said, became autistic. While the two candidates who are doctors — Rand Paul, an ophthalmologist, and Ben Carson, a retired neurosurgeon — said that childhood vaccines were safe and important, even they shied away from the strict schedule set out by the medical profession."

Uh-oh.

This needs to be on our radar ASAP. If Orac has a different item lined up for Friday, maybe we can pick this up downthread over the weekend. I'm interested in whatever strategy the SBM community has for dealing with it, which I'll promote in other places I hang out.

By Gray Squirrel (not verified) on 17 Sep 2015 #permalink

Gray Squirrel@14
It's already underway in Donald Trump thread (Ann first mentioned it in #132). Certainly a very scary situation.

By capnkrunch (not verified) on 17 Sep 2015 #permalink

CapnKrunch @ 15: thanks, I'll go there. Sorry I missed that and posted it here.

By Gray Squirrel (not verified) on 17 Sep 2015 #permalink

This needs to be on our radar ASAP. If Orac has a different item lined up for Friday, maybe we can pick this up downthread over the weekend. I’m interested in whatever strategy the SBM community has for dealing with it, which I’ll promote in other places I hang out.

Uh, I already wrote about Donald Trump's antivaccine proclivities a day before the debate, specifically because I suspected the issue might come up at the debate:

http://scienceblogs.com/insolence/2015/09/15/the-long-sordid-antivaccin…

Given that what he said at the debate was basically the same thing he's been saying for eight years, I don't know that it's a good use of my time to do a followup, particularly given that I'm at a meeting right now and my time is very constrained (which is why today's post might look familiar to some, but only some).

If the article at comment #2 is accurate, Corissa is in the same part of the world ie same city, as the late alternative medicine and Gerson guru, the Wellness Warrior.

Very sad if she turns out to be an acolyte.

Cancer is natural. That's what drives me nuts about this kind of quackery, in addition to all the inherent patient blaming. Natural and healthy are sometimes two different things. I had pretty much the same diagnosis myself, at age 39. (Lumpectomy) surgery, chemo, radiation, and a year of Herceptin infusions are all miserable, even without serious complications or side effects. Watching women die of the same disease is much worse. The people who love her will have to watch that happen to her, knowing she refused treatment. I don't think that's something a person ever gets over.

She is getting grossly irresponsible, benign-to-positive coverage in a couple of the British tabloids right now. The overall tone is of praise for being a lone wolf and implicit encouragement for being a maverick. I don't know how these idiotic tabs get away with this blatantly destructive, sensationalist coverage of such "mavericks."

The Daily Mail has some rather gory pictures of skin lesions apparently caused by black salve through which she was able to "pull out lumps".

I was reassured to see that all the top-rated (and worst-rated) comments were rather sensible objections to the story. It's a very unusual day when I agree with a Daily Mail commentator.

Cate K@22:

It’s a very unusual day when I agree with a Daily Mail commentator.

You want to rub some Black Salve on that, ASAP.

Sara @21

Perhaps because regulation of our press in next to useless? Because even actual medical journalists in mainstream media rarely have any relevant qualifications and so get taken in by any old manure of the bovine?

Disclaimer: I have complained to our then press regulator about inaccuracies and outright untruths in stories in the Mail; complaints dismissed because the articles in question were "opinion pieces", i.e. print any old lies you like as long as it is an "opinion".

Ahhh, Orac, seems like you're willfully ignorant and turn a blind eye to personal testimony.

Dr. Yoshihiko Hoshino in Japan has used the Gerson therapy successful for well over a decade now at their hospital. Dr. Wilko van der Vegt is another man with thousands of patient files confirming Gerson's effectiveness.

Gerson also documented his own 50 cases in his cancer book with irrefutable evidence. (but of course it

Mainstream treatments have never been proven to be more effective than Gerson's, or the litany of others such as Rene Caisse (who had over 50,000 signatures testifying to her work when it was presented to the Canadian government), Dr. Rife, John R. Christopher or Richard Schulze.

My own grandfather had leukemia and underwent Gerson therapy and was cured, living another 14 years while prior was given 4 months to live.

But of course, i'm sure the never-ending level of denial will continue on. Unfortunately, people such as the ones named in this article aren't truthful, and no practitioner has ever claimed 100% success rates, even Gerson himself said his success rate would have been higher had the family and patients been more cooperative. Nevertheless, the success rates with Gerson therapy are higher than poisonous treatments, that is proven in the fact the Gerson institute in Mexico has had thousands go through, and thousands find success, as well as the hospitals in Japan that use the therapy and have had great success, as well as in Europe.

When you or someone you know gets cancer and chemo/radiation fails you, hopefully you'll turn to Gerson therapy.

Dr. Yoshihiko Hoshino in Japan has used the Gerson therapy successful for well over a decade now at their hospital.

This is lacking in useful specific details. I'm pretty sure that Japan has more than one hospital.

By herr doktor bimler (not verified) on 30 Sep 2015 #permalink

Gerson also documented his own 50 cases in his cancer book with irrefutable evidence

If the evidence is irrefutable, then why is it only published in his book, and not a medical journal?

even Gerson himself said his success rate would have been higher had the family and patients been more cooperative

Quack cancer rule #43:When the 'treatment' fails, blame the patients!

Gerson himself said his success rate would have been higher had the family and patients been more cooperative

"I advised my patients not to die, but they stubbornly ignored my instructions."

By herr doktor bimler (not verified) on 30 Sep 2015 #permalink

http://www.dailymail.co.uk/femail/article-3236311/People-need-faith-giv…

"Using a homemade recipe she found online made from different herbs and roots, Ms Macklin-Rice made the drawing ointment to bring the cancer out of her chest.
'It can't go too deep so if things are at the surface it's okay and I actually pulled out quite a lot of lumps that were recurring,' Ms Macklin-Rice said. Using a homemade recipe she found online made from different herbs and roots, Ms Macklin-Rice made the drawing ointment to bring the cancer out of her chest.
'It can't go too deep so if things are at the surface it's okay and I actually pulled out quite a lot of lumps that were recurring,' Ms Macklin-Rice said."

And the image of the scar... As sensational as it is, the Daily Fail article might actually scare some people off from trying out quackery. Or so I'd like to believe.
I hate that I know how her success story is probably going to end. Sad.

ken, the page located by your URL explains why. Pro-tip: use Ctrl+F (or select Edit→Find) and type in tamoxifen. Then go read what it says at the various places it found for you.

By Bill Price (not verified) on 13 Oct 2015 #permalink