Respectful Insolence

As you probably remember, the case that first got me discussing the issue of children and minors opting for “alternative therapy” rather than conventional medicine was not Starchild Abraham Cherrix (Abraham’s personal website). Rather, this is a topic that I first approached nine months ago, even before I moved over to ScienceBlogs. With the prominence of the Cherrix case, the Wernecke case has dropped off the map more or less. Basically, her parents won the right to refuse the recommended radiation therapy for her, a treatment with a good chance of rendering her disease-free, and instead took her from her home state of Texas to Kansas to receive high dose vitamin C therapy and various other “alternative” treatments at a dubious clinic. As has been discussed before, there is no good evidence that high dose intravenous vitamin C therapy does anything for cancer, recent in vitro studies and a set of three case reports recently published in the Canadian Medical Association Journal notwithstanding. When last we left Katie, she was pursuing some unnamed treatments in secret, under (her father claims) the threat that the doctors would stop treating her if he publicized where she was and what treatments she was receiving.

As you may know, Katie’s family maintains a blog ostensibly “written” by Katie herself, called Pray for Katie. I’ve monitored it periodically, to see if there is news on the case. Yesterday, almost by coincidence, I dropped by the blog for a visit and found a rather disturbing entry: Monitor Your Alternative Cancer Treatments or Die. (Update: Old link inactive; new link here.

Let me give you some good advice if you are doing or thinking of doing alternative cancer treatments:

1. Find a doctor that will work with you.
2. Monitor tumor size and growth with MRI or CAT scans monthly.
3. At first sign of tumor growth monitor with MRI every two weeks.
4. If growing rapidly your treatment is not working and you must try something else.
5. Monitor weekly now, and you may need to seek some sort of conventional treatment to shrink the tumor if it becomes out of control or chocks off bronchial tubes or arteries.

MRI’s are the safest and least costly monitoring choice because they use magnetic resonance imaging instead of x-rays. Have an alternative doctor and a conventional doctor on board and know where you can go in advance if something goes wrong.

I got an ominous feeling in the pit of my stomach as I read this. Remember, this is almost certainly Katie’s father writing this. This is the same man who went on the run from the law briefly, rather than let his daughter be subjected to radiation therapy. Indeed, his fear of radiation seems to have been one significant factor in Katie’s parents’ decision to refuse radiation treatments for her. At the time, this is what he said:

“Radiation’s effects on a child are a lot different than they’d be on me,” said Edward Wernecke, 53, Katie’s father. “It could shape her whole future — make her sterile, stunt her growth, cause her to get breast cancer in her 20s. The effects would be with her the rest of her life.”

On Pray for Katie (Update: New link here), he wrote:

Radiation would be done to Katie’s chest. She is 12 yrs old and hasn’t developed sexually and is not physically mature yet. The radiation would damage her lungs (cystic fribrosis), her heart muscle would be damaged, her breasts would be damaged and would likely develop breast cancer later, and her spinal column in her back would be damaged and she would not grow any taller and may have learning problems. Her thyroid and thymos glands would be damaged and she would have hormone problems. Immediate side effects are nausea and vomiting, low blood counts, mouth sores, and skin burns.

It apparently didn’t sway him to see several comments from lymphoma survivors who had had radiation and not developed all the complications Edward Wernecke so feared for his daughter. Even as recently as a month ago, Mr. Wernecke was posting about the horrors of radiation:

Dr. John Gofman has studied the effects of radiation on human health for 45 years. A medical doctor with a PhD in nuclear and physical chemistry, Dr. Gofman worked on the Manhattan Project, discovered uranium-233, and was the first person to isolate plutonium, In five scientically documented books, Dr. Gofman provides strong evidence that medical technology-specifically x-rays, CT scans, and mammography and fluoroscopy devices-are a contributing factor to 75% of new cancers. Gofman elaborates that it is not x-rays alone that cause the damage but a combination of health risk facors that include poor diet, smoking, abortions, and the use of birth control pills. Dr. Gofman predicts that ionizing radiation will be responsible for 100 million premature deaths over the next decade.

Gofman is of the camp that there is no safe dose of radiation. However, he takes it much farther than most, to the point of scaremongering, and it is not surprising that Mr. Wernecke would have found his writings. Let’s get this straight. There is no doubt that radiation therapy in childhood can result in late malignancies in adulthood. There is an extensive scientific literature on this topic, and the magnitude of the risks are fairly well known, as are the types of cancers that radiation therapy predisposes to. (We also have the data from survivors of the atomic bombings of Hiroshima and Nagasaki, as well as more recent data from the survivors of Chernobyl.) However, when you weigh these late risks with the odds of surviving without radiation, and the risk-benefit ratio is usually well in favor of radiation. Similarly, there is indeed an increased incidence of cancer from low-dose medical radiation, but it is very small, and there is no way that it even comes anywhere close to causing 75% of new cancers. For example, in a study of young women who had had multiple fluoroscopies in the 1950’s through 1970’s for tuberculosis, when the dose from such studies was much higher than it is now, at 10 years, the estimated relative risk of breast cancer was 1.7, and this data was actually fairly similar to that found in female survivors of the atomic bomb. In children, the risk of cancer from a single CT scan of the abdomen is quoted as being round 0.18% (0.07% from a head CT).

That having been said, however, it’s clear that Mr. Wernecke was quite afraid of the effect of radiation on his daughter, regardless of the data, which shows that, while radiation does carry risks, compared to the risk of dying from lymphoma, those risks are usually acceptable. So why is he now advocating multiple CT scans to follow the size of tumors in patients undergoing alternative therapies? Yes, he does say that MRI is better because it doesn’t use ionizing radiation, but he seems perfectly willing to go with CT scans if necessary at a rate that surpasses even the most aggressive protocols to follow tumors in most cancer patients undergoing therapy.

I fear what the answer is. My readers will slap me down if they think I’m reading too much into Mr. Wernecke’s post, but I fear that his words may be an implicit admission that the alternative medicine he has chosen is failing and that Katie’s tumors are growing. Indeed, it almost sounds almost like a plea. Note, especially, how Mr. Wernecke specifically mentions preventing tumors getting “out of control or chocks off bronchial tubes or arteries.” We know from news reports that Katie had a large lymphoma tumor in her chest, and these are certainly complications that could occur to Katie if her tumors were to start to grow again. Note also how Mr. Wernecke mentions that a conventional treatment might be needed in this case. (What? The alternative therapy can’t handle this complication? Why not?) I also have to emphasize that the scanning regimen that Mr. Wernecke is suggesting is far more frequent and aggressive than even the most aggressive “conventional” oncologists would probably recommend. We rarely do scans more than once every two or three months or during treatment, and almost never once every two weeks. Indeed, if a tumor is growing so fast that its growth can be easily detected in two weeks, the patient is in serious trouble indeed, so much so that nothing may be able to help.

Mr. Wernecke goes on:

You must monitor your tumor. Tumor markers are unreliable. [Orac Note: Mr. Wernecke isn’t quite correct about tumor markers; some markers (CEA or PSA, for example) are pretty reliable as an estimate of tumor burden for tumors that are documented to produce them before treatment. He is, however, correct that most other tumor markers are not that reliable.] You can’t go by how you feel. By the time you feel bad it can be too late. Know what is going on with MRI’s which if you pay cash can be had for about $600. Whole body scans are about $1000 for cash.

There is not enough information on alternatives and they do not work the same for everyone, especially if you have already had chemotherapy or radiation treatments.

I’d rather try the alternatives first, but you must absolutely monitor your progress.

“There is not enough information on alternatives and they do not work the same for everyone, especially if you have already had chemotherapy or radiation treatments”?

Again, maybe I’m reading too much into this, but doesn’t this sound as though he is having second thoughts and starting to make excuses for the failure of the alternative medicine, particularly since he appears to have been trying other different therapies than the intravenous vitamin C the family initially left the state to obtain? Why is he warning that alternative treatments “do not work the same for everyone” and implying that chemotherapy and/or radiation may be the cause? Why, after saying three months ago that Katie’s tumors had shrunk, is Mr. Wernecke suddenly warning his readers in such a harsh manner (“monitor your alternative cancer treatments or die”!) to get frequent objective measurements of tumor volume while on alternative therapy and not to rely on blood tumor markers or how they feel, warning them in no uncertain terms that by the time they start to feel bad it could be too late? All of these are things that conventional doctors routinely do while using conventional chemotherapy because they realize that how a patient feels does not necessarily indicate that the tumor is not still growing. Weren’t Katie’s doctors doing routine MRIs or CT scans every three months or so while she was on treatment?

I truly hope I’m wrong, but a feeling in the pit of my stomach tells me that it probably won’t be long before we hear some bad news about Katie, although if her Hodgkin’s lymphoma is progressing I doubt Mr. Wernecke will announce it on Katie’s blog and we probably won’t hear about it until Katie’s death. Again, I hope I’m reading too much into this. Regardless, I urge Mr. Wernecke to take his own advice and take his daughter back to M.D. Anderson. The doctors there may still be able to save her life. At least, I hope it’s not too late.

Comments

  1. #1 Maggie
    August 9, 2006

    I, too, read Edward Warnecke’s blog comments yesterday and came to the same conclusion you did. I’m pleased to hear that you believe there’s some chance the Katie’s life can still be saved by traditional cancer therapy–I had feared it might be too late. But mostly I’m hoping that the Cherrix family is following Katie’s story and will take Mr. Warnecke’s advice to heart.

  2. #2 Alex Whiteside
    August 9, 2006

    It’s heartening that someone can make such a level-headed assessment in spite of strongly held beliefs.

  3. #3 clone3g
    August 9, 2006

    Aside from the high dose vitamin C thing, Katie completed chemotherapy, achieved remission, and chose to refuse radiation therapy. (At least that’s what I remember, please correct me if I am wrong.)

    What are the long term survival rates for HD treated with chemotherapy + radiation vs. chemo alone? If the risk of secondary malignancy is greater in the combo group, and long term survival is comparable, is it unreasonable to choose chemo alone?

  4. #4 SarahBeth
    August 9, 2006

    I read the part about an MRI costing only $600, or $1000 for a full body scan. Where do they get their MRI’s? I just had to have one done because I have migraines and the total was $7183.00 (this was for 3 views w/ and w/out contrast). Granted, my health insurance will pay most of it. I cannot find an MRI anywhere for less than $1500 at least. More if they use contrast. Even CT scans are over $1000. And even if cash is cheaper than going through insurance, and hospitals jack up prices to get decent payments from the insurance companies, that is a huge discount. I can’t see any hospital giving an MRI for $600.

  5. #5 Amy Alkon
    August 9, 2006

    A wise friend once told me, some people would rather die than admit they’re wrong. I hope this isn’t the case here. Maybe this is a prelude, in confessional form, to going for proven conventional medical treatment for the girl. Let’s hope so, and let’s hope it isn’t too late.

    On a related note, Forrest MacGregor, the uncle of the Cherrix kid, was so upset about my posting about how stupid it is to use unproven treatments like Hoxsey that he bought up all the domain names with my name (except AmyAlkon.com, which I own and bounce to my site) and threatened to put up a site about me…which would be, by the way, illegal under the Lanham act.

  6. #6 Pharma Market Researcher
    August 9, 2006

    I too read the blog comments and got a very very bad feeling. As a market researcher, I often say that “perception is reality” but let’s hope that the perception of alternative therapy does not lead to a very tragic reality in this case…

  7. #7 Eric
    August 10, 2006

    I think you are right on the money here. I just hope that Katie does not pay with her life for her father’s “mistake”. The reason her father could not document the treatment/hospitals/doctors is because they would be disbarred for such unethical treatment.

    Treatments without tracking progress to show results
    Treatments with unknown and possibly fatal results
    Treatments without proper disclosure of the facts

    People can complain about conventional medicine all they like, but you can’t knock it’s effectiveness since it proven and tested.

    In the end the alternative crowd will claim that the negative energies and the delay in treatment caused the failure, without any evidence of course. Unfortunatly the death of Katie will probably not be as big news as the “victory” for alternative medicine her court battle was.

  8. #8 David Harmon
    August 10, 2006

    If “perception is reality”, then willful obliviousness is… ???

  9. #9 Anne
    August 11, 2006

    Or maybe Wernecke’s lawyer told him to post that in case anybody relied on his advice to their detriment.

  10. #10 Susan Chicos
    October 14, 2006

    You know if Katie’s unorthodox treatment had truly been effective her crazy father would be trumpeting it from the roof-tops and parading Katie up and down main street. Instead, he hides behind a statements like “Katie wants no publicity” and has forbidden his wife to comment.(No thinking person would obey that nutcase, as she evidently has decided to do.)

  11. #11 Susan Chicos
    October 14, 2006

    You know if Katie’s unorthodox treatment had truly been effective her crazy father would be trumpeting it from the roof-tops and parading Katie up and down main street. Instead, he hides behind a statements like “Katie wants no publicity” and has forbidden his wife to comment.(No thinking person would obey that nutcase, as she evidently has decided to do.)

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