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Cancer & Misinformation/MythsSurvivorship

Spotting Cancer Scams and Shams: Watch for Partial Truths & Overpromises

Today, we even use the Internet as a stand-in for doctors and medical advice. Dr. Forrestal provides surefire advice on how to know when sources are trustworthy, and how to spot misleading claims, scams, and false information.
June 2022 Vol 8 No 3
Kerry A. Forrestal, MD, MBA, FACEP
Emergency Medicine
Salisbury, Maryland

A major topic for anyone dealing with a cancer diagnosis is how to avoid being scammed during cancer care. The total number of scams is not known, because they are often unreported, as a result of patient or family concerns, but it is significant.

In 2021, Ivan Andre Scott of Kissimmee, Florida, was convicted of swindling patients with cancer and the government for $3.3 million.1 This is just one person. The Reynolds family of Knoxville, Tennessee, was guilty of defrauding well-meaning contributors to cancer charities of $187 million2 (always check www.charitynavigator.org before donating).

And then there are the faux medical clinics in Mexico, especially in Tijuana (which we will discuss soon), the GoFundMe frauds, and the list goes on.

We all know our world is crammed with fraud. From “new and improved,” which usually means the label, not the contents, to scammers who wipe out one’s life-savings with a phone call. Usually, after getting burned once or twice, we are good at seeing these frauds coming. If you haven’t seen James Veitch’s 2015 TED Talk about this, do so at your earliest convenience. Mr. Veitch makes a hobby of replying to scam e-mails to waste their time with hilarious results.

However, when we’re dealing with something as serious as cancer, our filters can fail us. This isn’t money we’re talking about, it’s our lives, or the life of a loved one. It’s hard to make good decisions from a position of fear. Our mindset changes from healthy skepticism to desperate possibility.

Scientific Research versus Consumer Research

People often say, “I’ve done the research” when recommending something to you. As the fictional character Inigo Montoya said, “That word you use, I do not think it means what you think it means.”

As consumers, we “research” a topic and come to a conclusion. We make up our minds. This is how most of us understand “research.”

As scientists, however, we “research” a topic and then come to a question. Same word, different process, and very different outcomes.

When we had to get a car for my daughter for school, we looked at articles on the safest car for new drivers, talked with friends who had made similar decisions recently, read Consumer Reports and everything we could, until a picture emerged of our choice. We did research.

By contrast, when I did research on domestic violence during my medical residency, after I did the research I came up with a question: “What factors correlate with success in getting out of an abusive relationship?”

When the car research was done, I went out, bought the car, and that was that. With the domestic violence research, I was just starting. I then spent months designing a study, putting the study in the field, collecting the data, analyzing the data, and publishing the results. Research was the start of the process, not the end.

Consider the Words Used

Here is a short list of examples from my book to help sift the good information from the bad, along with some cautions. The first 3 tips are closely related.

The more anything promises, the less it is likely to deliver. This is true for everything in life, including cancer treatment.

Absolute words are rarely used in true science. Words such as “proven,” “cure,” “unarguable,” “conclusive,” or “settled” are not often used in medicine. Words such as “cover up” and “conspiracy,” and phrases such as “your doctor (or government, or pharma) doesn’t want you to know” are a dead giveaway and should be suspected.

Instead, real science uses tentative or “soft” words, such as “associated,” “may,” “correlate,” “support.”

The following quote is an example of an evaluation of acupuncture as a complementary treatment during cancer care that sums up the 3 points above. I have added the bold type for emphasis:

“During acupuncture treatment, a practitioner inserts tiny needles into your skin at precise points. Studies show acupuncture may be helpful in relieving nausea caused by chemotherapy. Acupuncture may also help relieve certain types of pain in people with cancer.”3

Note that the first sentence just explains in simple terms what acupuncture is. The authors are trying to create understanding, not confusion. They don’t use jargon or science-sounding words. In the last 2 sentences that do make a claim, there are 4 qualifying or softening phrases:

Studies. You should always look for references from reliable sources. Usually they’ll be at the end of the article, or the book.

May help/be helpful. It doesn’t overpromise, but instead offers a possibility.

Nausea caused by chemotherapy. It makes a limited claim only about nausea, not about every symptom associated with chemotherapy.

May also help. Again, a suggestion, not overpromising.

Certain types of pain. And again, this limits the expectations with certain types of pain.

Always Research Your Research

If a website claims something, research the website, the claim, and the author.

Let’s review the little-known case of the actor Steve McQueen, who was one of the top box office stars of the 1960s and 1970s. Many people probably have a favorite film of his (mine is The Great Escape). In 1980, Mr. McQueen was diagnosed with advanced mesothelioma (a type of lung cancer). After a brief treatment, his doctors told him that there was no effective therapy for him, and to make good use of the time that he had left. Instead, Mr. McQueen looked for options. He found William Donald Kelley, DDS, who was a dentist with a sideline clinic of “curing” cancer with nutritional healing. Yes, you read that right, a dentist.

Dr. Kelley worked in Tijuana, because he had lost his US license to practice dentistry years before he met Mr. McQueen. He opened a clinic outside of the United States, where he gave the very sickest patients with cancer coffee enemas, pancreatic enzyme injections, and nutritional supplements. Mr. McQueen ended up paying Dr. Kelley $1.3 million in today’s money, was declared mesothelioma-free by Dr. Kelley, and returned to the United States, causing a national sensation. Mr. McQueen was dead within 3 months.4

Right out of the gate we can see the red flags, but it does not seem that Mr. McQueen knew about the man’s medical past. Mr. McQueen’s widow, Barbara, said in an interview in 2005, that she didn’t delve into Dr. Kelley’s background, and she makes no mention if her husband did.4

So when you see any medical claim, be sure to check the source.

There is no evidence that Mr. McQueen’s life was prolonged by Dr. Kelley’s therapies. In fact, it was an ill-considered treatment that ended his life. Instead of spending his time on his beloved ranch or racing one of his many motorcycles or cars, he was holed up in a Tijuana clinic getting coffee enemas and pestering the nurses for sweets (according to his wife).4

Be Careful of Partial Truths

George R.R. Martin, author of the Game of Thrones series, has a great quote about lies and truths: “The best lies contain within them nuggets of truth, enough to give a listener pause.”

By starting with something that the listener knows to be true, you set a framework of trust. Then you proceed to the portion that the listener takes on as new knowledge, which is being accepted as true, even though it is not.

Let’s look at the recent fad—“alkaline treatment to kill cancer”:

The assertion is that making your body alkaline will kill cancer, or alkaline (or acidic) foods kill cancer.

The nugget of truth is that cancer cells cannot survive in an excessively alkaline (that is, acidic) environment.

Why is this a hoax? Our bodies have to maintain their pH balance in a very narrow range for us to live, so achieving that cancer-killing pH level is not possible without killing you.

The “pH scale” is the measure of acidity between 1 and 14, with 1 being the strongest acidity possible, 6.9 the weakest, and 14 the strongest base possible; 7 is neutral. For example, the stomach acid is from pH level of 1.5 to 3.5; bleach is 11 to 13. The human body functions at around 7.3 to 7.4. I’ve had the sickest person survive a pH level of 6.6 (which is too low), but only rarely. The highest pH level I’ve ever seen is about 7.8.

So if, for example, you drink a bottle of alkaline water, it is about pH 8. This is added into a stomach acid of pH 3.5, so it isn’t going to do much, because the body has multiple systems to prevent it from moving out of the 7.3 to 7.4 range. Alkaline water can theoretically help with reflux disease, but as far as a cancer cure? No study has ever shown that taking food or medicine to make your body more alkaline has improved cancer outcomes.

A blog post from Henry Ford Clinic has a great observation: “So when you drink alkaline water, you’ll change the pH of what’s in your toilet bowl, not your blood.”5

So yes, if you pour bleach on cancer cells in a petri dish, they will die. If you were to make your whole body alkaline enough to kill the cancer cells, you too will die with the cancer cells. So technically, this is not “wrong,” but it is certainly misleading.

Verify the Proof

Beware of “the story.” Although individual stories can help make people connect with a subject, a single experience cannot be applied to everyone. As the saying goes, when buying a car, “your mileage may vary.” (Doesn’t it always? And generally, not to our benefit.)

If someone makes a claim about a cure, ask to show you the data from a reputable source. People who have data to support their claim are generally eager to share it. This makes sense; it proves their position. Anyone who is evasive, uses confusing jargon, or who claims that people don’t want you to know about this, is generally doing so because he or she does not have the data.

A family member of one of my patients was adamantly against COVID-19 vaccination. I asked why, and he replied that 2 of his close friends died directly from the shot. Based on the most generous estimations of dying from a COVID-19 shot, the chances of this man knowing 2 people who died from the shot are roughly 1 in 9.5 billion. I took the step of asking their names, and he replied, “Um, Bill and uh....”

Draw your own conclusions, but beware if the story is the proof.

Share with Your Doctor

The last point is less about spotting a scam and more about keeping your care coordinated in case things go wrong.

If you engage in treatment outside your main cancer care, you must share it with your doctors. Preferably, do so before you start any outside treatment. Give your doctors the chance to show you why the information you have may not be exactly what you think it is.

Furthermore, some of these alternative or complementary medicines can interact with your main therapeutic medications in negative or even disastrous ways.

Reliable Information Sources

People tend to use the Internet now as a first stop when faced with a medical condition. Depending on what you find first, you may be led astray by some convincing-sounding nonsense, and it can have a profound effect on your interactions with real healthcare providers.

As a rule, online domains with “.gov” are the most reliable.

Domains with “.org” and “.edu” have reliable information that is well-scrutinized, and only few of those promote disinformation for whatever reason, but as a rule they are reliable.

Some “.net” domains are very good, such as www.cancer.net, but this is more of a mixed bag. Be very cautious about “.com” domains. The “com” stands for “commercial” as in “they’re trying to sell you a product.”

In addition, some domains have nothing of value to offer you and are deemed a threat to any user. These domains include “zip,” “link,” “country,” and an especially reprehensible site is “science.” If you must surf the Internet for information, never rely only on 1 or 2 sites, and check who is sponsoring the site.

So keep the faith, my friends. As patients, know that there is an army of cancer warriors at your back, including your nurse navigators, whose job is difficult but so very important.

References

  1. U.S. Department of Justice. Patient Recruiter Sentenced to Prison for $3.3 Million Cancer Genetic Testing Fraud Scheme. April 14, 2021. www.justice.gov/opa/pr/patient-recruiter-sentenced-prison-33-million-cancer-genetic-testing-fraud-scheme.
  2. Ruiz RR. 4 Cancer Charities Are Accused of Fraud. New York Times. May 19, 2015. www.nytimes.com/2015/05/20/business/4-cancer-charities-accused-in-ftc-fraud-case.html.
  3. Mayo Clinic. Alternative Cancer Treatments: 11 Options to Consider. January 27, 2022. www.mayoclinic.org/tests-procedures/cancer-treatment/in-depth/cancer-treatment/art-20047246.
  4. Worthington R. A Candid Interview with Barbara McQueen. October 31, 2006. www.worthingtoncaron.com/Patient-Stories/A-Candid-Interview-With-Barbara-McQueen.aspx.
  5. Henry Ford Health. Alkaline Water: Health Drink or All Hype? August 8, 2018. www.henryford.com/blog/2018/08/alkaline-water-help-hype#:~:text=So%20when%20you%20drink%20alkaline,t%20affect%20your%20body's%20acidity.

Key Points

  • Scientists use tentative or “soft” words like “may,” “correlate,” “support,” or “associated” rather than definitive words such as “cure,” “proven,” “conclusive,” and “unarguable”
  • If you receive care outside of your main cancer center facility, you must share this information with your doctors
  • Some alternative or complementary medicines can interact with your cancer medications in negative or even disastrous ways, so always check with your oncologist first
  • The Internet is full of false and misleading information, so it’s imperative to research Internet sites and properly vet sources and authors
  • If someone makes a claim about a cure, ask to show you the data from a reputable source

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Last modified: September 27, 2022

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