Yesterday, I wrote about the winner of the Nobel Prize in Physiology or Medicine, Youyou Tu, who, after screening 2,000 herbal treatments from traditional Chinese medicine (TCM) for anti-malaria activity, finally discovered Artemisinin. She isolated it from the plant in which it is found, using modern chemistry to isolate it, purify it, and later chemically modify it to make it more active against malaria. Tu deserved the Nobel Prize for her years of screening. As I pointed out, contrary to how the awarding of the Nobel Prize to Tu is being spun, it is not a validation of TCM, but rather of natural products pharmacology, the patience of scientists, and her relentless search for a natural product that could be turned into a treatment for malaria. She succeeded, and likely millions of lives were saved since the late 1970s because of her work.

In light of attempts to co-opt Tu’s Nobel Prize as “evidence” that there must be something to TCM, it seems unbelievably timely that I was made aware of this story last night in The Guardian. I took note of it because it’s rare for the consequences of quackery to be so explicitly spelled out in the headline, Missing boy faces ‘agonising death’ from cancer unless he has surgery. Yes, sadly, it’s another story of parents fleeing with their child with cancer to pursue alternative cancer cures. I’ve been writing about such stories since the very beginning of this blog, and they still sadden me greatly. I fear that I will be blogging about such stories until I retire from blogging or die, whichever comes first:

A missing 10-year-old boy with an aggressive cancer in his jaw may suffer a “brutal and agonising death” within a year without urgent surgery refused by his parents, a high court judge has said.

Now here’s where the story is unusual. It lays out in graphic detail the consequences of not operating and what will happen to the boy, who is not named. It’s also highly unusual in that it is the surgery, not the chemotherapy, that the family is afraid of, leading Mr. Justice Mostyn to urge the boy’s parents to cooperate with doctors:

Mostyn said: “The unambiguous medical evidence given to me in writing and orally by a distinguished paediatric oncologist … is that if it is not removed very soon then in six months to a year [the boy] will die a brutal and agonising death.

“She has spelt this out in remorseless and unflinching detail. [The boy] will not slip peacefully away. The cancer will likely invade his nerve system, affecting basic functions such as speaking, breathing and eating. His head will swell up grotesquely. His eyes may become closed by swelling. A tracheostomy may be needed to allow breathing. Above all, the pain will likely be excruciating.”

According to the ruling, the boy is suffering from a very rare and aggressive cancer in his right jawbone, known as a craniofacial osteosarcoma, which has left him with a tumour about 4in long and 1.5in wide.

It was spotted in summer 2014 and he has since undergone six cycles of chemotherapy. However, an NHS trust with responsibility for the boy’s care had asked Mostyn to rule that specialists could perform surgery, after the boy’s parents refused to give their consent.

So, as far as I can tell from perusing news stories about this case, what the doctors were doing is something called neoadjuvant chemotherapy. Basically, for cancers whose primary treatment is surgery, chemotherapy is, when appropriate, administered either before or after surgery to decrease the risk of recurrence. When it’s delivered after surgery it’s called adjuvant chemotherapy. When it’s delivered before surgery it’s called neoadjuvant chemotherapy. Usually neoadjuvant chemotherapy is preferred in cases where it is desirable to shrink the tumor before surgery, either to make the surgery easier or to allow organ preservation. For example, in breast cancer surgery, neoadjuvant chemotherapy is frequently administered to shrink large tumors to allow breast-conserving surgery (lumpectomy). In low rectal cancer, it’s frequently administered to patients with tumors that would require abdominoperineal resection (APR), which involves removing the entire rectum, including the attached anal sphincter, sewing the anus shut, and leaving the patient with a permanent colostomy. Patients hate that, and understandably so. In many patients, neoadjuvant chemoradiation can allow for preservation of the anal sphincter through sphincter-sparing surgery. In the case of bone tumors like the one this Polish child has, neoadjuvant chemotherapy can allow for limb-sparing surgery. It used to be that all extremity osteosarcomas required amputation. Not any more.

My guess is that the pediatric oncologists were using neoadjuvant chemotherapy in order to shrink the tumor on the child’s jaw to the point where it wouldn’t be necessary to remove the entire jawbone, an operation that would be highly disfiguring and very hard to do reconstruct surgically with a good cosmetic result. In another story, we learn that it was the surgery that caused the parents to balk:

The court heard how the parents also fear they will be blamed if their son becomes ‘disfigured’ in later life. The operation involves moving skin and bone from the boy’s leg to his mouth which could leave him ‘lop-sided’.

Also:

After being told about the procedure, the boy apparently screamed out: ‘I don’t want to have it, because I don’t want to have a foot in my mouth.’

The judgement heard that the boy would possibly be affected by ‘lameness’ in the future and that he would need false teeth in that part of his mouth.

This is, of course, why we do not allow children to make decisions about their health care. Any 10-year-old child who hears that the doctors are going to take part of their leg and move it to their mouth is likely to be horrified and say he doesn’t want it. Of course he is, because he probably doesn’t have the maturity to understand the weighing of the benefit of preventing dying versus the risks and complications from surgery. All he hears is that he’s going to undergo pain and disfigurement. On the other hand, he seems to have endured the chemotherapy well; perhaps hearing about the surgery was just too much after the long course of chemotherapy.

The parents, we learn, are “very frightened and fearful” and have thus decided to treat the child with traditional Chinese medicine. Unfortunately, what they seem most to be fearful of is that their child will hate them for disfiguring him. As much as I empathize with the parents, though, as horrible as it sounds, if you have a child there might come a time when you are called upon to make a decision like this. For the good of the child, you have to deal with the consequences of the treatment. Few are the people who would truly argue that it’s better to be dead than to have the degree of disfigurement likely to result from the proposed operation. And if your child blames you for disfigurement, so what? You did what was right and saved his life.

And, yes, the chances of survival are not 100%, which also seems to have been a reason to reject the treatment. One possible outcome would be to go through the surgery and still die of the cancer. Indeed, it’s not an unlikely occurrence as five-year survival for jaw osteosarcomas hovers around 50%, perhaps less. But, given the expected outcome of not doing surgery, which is truly horrific, it’s hard to justify withholding surgery. At least the surgery could be palliative.

Make no mistake, there is nothing in TCM that is likely to be measurably better than doing nothing for this child’s tumor. Whether driven by fear that their child will hate them for his “disfigurement” or by their child’s fear of being disfigured, the parents have made a horribly wrong decision and, apparently, fled the country to pursue cancer quackery instead. Worse, they’re apparently goign to a practitioner who has never treated this sort of cancer before:

The judge said the boy’s parents preferred to treat him with Chinese medicine and indicated that they had spoken to a practitioner. “The practitioner has not treated a cancer like this before and his technique is to treat the whole body to seek to promote overall wellness,” Mostyn said. “The evidence before me is that even in China, where the use of Chinese medicine is widespread, surgery is the standard treatment for a cancer of this kind.”

Quite correct. Indeed, as I noted in yesterday’s post, in China increasingly people are rejecting TCM in favor of science-based medicine. Seemingly, it’s mainly “Westerners” seduced by the lure of a “natural” alternative to “cutting, burning, and poisoning” who make decisions as disastrous for the well-being of their children as these parents have. I understand that cancer’s scary. I even understand that this is a case where it was actually not fear of the chemotherapy that drove the parents into the arms of quacks. As always, I empathize with them for the terrible decision they faced and the pain of seeing their child suffer. Unfortunately, I fear their choice will result in their child suffering even more and then dying.

Comments

  1. #1 Leigh Jackson
    October 8, 2015

    My heart breaks. If the parents had made the decision to continue treatment it would still break but a little less.

  2. #2 Lenny
    UK
    October 8, 2015

    This is a horrible situation. The child is facing (probably) a hemimandiblectomy, possibly with a radical neck dissection, and will almost certainly be scarred for life. How long that life will be is anyone’s guess. There are many treatment options, noe of which are pleasant. They, however, have chosen the worst option and will hopefully have this explained to them before the child suffers too much.

    I have a friend who is doubly-qualified (medicine and dentistry) and worked as a maxillofacial surgeon. She gave it up because she couldn’t handle the awful surgery she inflicted on people with head and neck malignancies and the dreadful outcomes. In her opinion, most people in this situation would be better off palliating. She now works as an anaesthetist.

  3. #3 capnkrunch
    October 8, 2015

    Lenny@2

    In her opinion, most people in this situation would be better off palliating.

    I think lack of palliative care is an oft overlooked aspect of alt med. Sure, I don’t think doctors pursue this option as often or present it to patients/guardians as well as they could but at least it’s there. There’s no point where alties will say “we can’t do any more except do our best to make you comfortable.” It’s quackery to the bitter (often excruciating) end, and when the end comes it’s the patient’s fault for one reason or another.

  4. #4 rs
    October 8, 2015

    Years ago when I was young I worked at a company where someone about my own age had had this type of cancer and almost all his jaw was removed. I don’t know more about it or how old he was when it was done, other than that it was when he was a child.

    He was smart, personable, and a productive worker. He was also alive. His diet was limited by the resulting deformity and his speech was difficult to understand. Wherever he went people stared at him, even in the office where he was a familiar sight.

    What his interior life was like I don’t know. He attracted a lot of pity. I got the impression he didn’t much like that.

  5. #5 sadmar
    October 8, 2015

    Reading Lenny and capnkruch’s comments, it occurs to me this might not really be a TCM story at all. E.g., the parents may have succumbed, to their own great pain, to the boy desire to face death rather than face disfigurement. Or, of course, they could be jerks who would rather have memories of a ‘normal’ kid, than deal with the realities of a ‘freak.’ If anything like this is at work, their claim to be seeking TCM may just be a ruse, an excuse. That is, they know it won’t work, but since it has some social validation, they can come off as doing ‘something’, perhaps to cover their own butts, but perhaps also as a psychological palliative for the boy – keeping his spirit up, hoping for placebo effects. ??

    I’m not claiming this is the case, I’m just observing that correlation ≠ causality. They may have been seduced by woo, but we lack the evidence to say that for sure.

    Possible support for the “woo as excuse” hypothesis:
    1) They were apparently fine with the chemo, and only balked at the disfiguring surgery. This may suggest an absence of prior woo proclivities.
    2) Based on my reading of previous RI posts, TCM seems like an odd choice for desperate cancer patients, as there are so many cancer-specific woos out there claiming cures for malignancies, which AFAIK TCM doesn’t do. That is, it seems more likely they’d be going to something like Gerson’s if they were true Alt-ies. I mean, their TCM practitioner has never treated cancer before. It almost sounds like the practitioner is in on what is basically a game: “treating the whole body to seek to promote overall wellness,” is awfully weak sauce in the face of aggressive cancer. I get the vibe they sought out the (perhaps even reluctant?) practitioner, rather than being recruited/seduced by a homicidal conman like Brain Clement.

    In any event, a sad story.

  6. #6 Awithonelison
    October 8, 2015

    Isn’t letting the cancer continue going to be pretty disfiguring?

  7. #7 NickJ
    October 8, 2015

    “what’s the harm”

    (yes, assuming they are actually choosing TCM as hope for a cure.)

    Things like the Nobel headline giving false credence to TCM. That giving people false belief in snakeoil to the point of avoiding treatment with an actual chance of helping. It skews the ‘fear landscape’ when parents need to make decisions for their children. Then they choose poorly, but defend the choice with ‘we thought we were doing what was best’.

    That’s the harm.

  8. #8 Rich Bly
    Ocean Shores
    October 8, 2015

    Orac,

    Part of what I do in my job is food safety. The site http://www.foodsafetynews.com has a article concerning fermented cod liver oil (FCLO) and how one of the major makers of this product is not supplying a safe product. I had never heard of FCLO before so I googled it.

    Not to my surprise this is a woo product. What I found was a long list of what it will cure or prevent. It was stated that it would prevent breast cancer, cavities, diabetes, make your children smarter etc.

    The remarkable dietary properties of FCLO was determined by a DDS after studying cats.

    Just some more wooist BS that I thought might interest you.

  9. #9 Alia
    October 11, 2015

    Well, if they really decided to flee to Poland, as the article states, the TCM element does start to sound like an excuse. Would they be consulting their TCM practitioner over the Internet? Because there are very few TCM practitioners over here – our own brand of quacks are mostly faith healers or herbalists (but Slavic ones).

  10. #10 Sastra
    October 11, 2015

    The (boy) will not slip peacefully away.”

    I may be wrong here but the fact that the judge included this realistic caution makes me suspect that the parents themselves might have at some point told a medical professional that a “natural death” was a fair alternative to TCM. If the “whole body “treatment was ineffective, then it was better to die with dignity– and wake up in heaven (or whatever.) that indicates altie. At least, my altie friends not only have a romanticized view of what happens when nature takes its course, they also see Nature as God, doing everything for the best and everyone just getting better and better, given that death is an illusion.

    They love to tell stories of people “slipping away ” naturally– and dying in agony from modern medicine. Couple this with the belief that faith will be rewarded, and it’s a recipe for well-meaning torture.

  11. #11 herr doktor bimler
    October 11, 2015

    Not to my surprise [fermented cod-liver oil] is a woo product.

    “Buggrit, that stockpile of cod-liver oil in the warehouse, it’s gone rotten.”
    “Not to worry, we’ll increase the price and sell it to Alties.”

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