Would you recommend stocks and funds without knowing anything about the investors in question? Would you skip even the most basic investment research? Would you promise investors that they’ll double their money within months? Would you ignore the risk that your advice could cause irreparable financial harm?
Welcome to the world of cancer advice.
Multiple times each week, I receive messages offering advice that has the potential to severely damage my health. There are more than
200 types of cancer, each with various subcategories. What worked for other cancer patients almost certainly won’t work for me. Indeed, my cancer is so rare that there are just 3,400 cases diagnosed in the U.S. each year. What about the “magic” cures that get pedaled? If such a thing existed, do you really believe the medical community would blithely ignore it?
That brings me to a message from Saturday: “People that live in the ‘Blue Zones’ live longer, disease free, than anyone else in the world. The five blue zones are Okinowa, Japan, Sardinia, Italy, Nicoya, Costa Rica, Ikaria , Greece, and Loma Linda, California. These people literally have NO health issues. they accredit this to the food they eat, a sense of community and clean climate. In Okinowa, Japan the people eat the brown seaweed from the ocean daily. This seaweed contains an ingredient called Fucoidan. This ingredient kills cancer cells on contact. Cancer does Not exist there.”
Let’s recap:
- These people literally have NO health issues.
- This ingredient kills cancer cells on contact.
- Cancer does Not exist there.
Hmmm.
Others might say my correspondent has good intentions. After receiving hundreds of such emails since last June, I’m less inclined to be charitable. I consider the advice utterly reckless. This is the sort of ignorant nonsense that some would be gullible enough to believe — and which could send them to an early grave. My plea to the world: If you’re doling out advice, whether it’s medical, financial or otherwise, do a little research before you do a lot of harm.
Did you just log in? If you don't see the commenting form, please refresh the page.
This reminds me—I’ve been catching up on mail since we got back from our South America trip, and I saw your piece in the AARP magazine (which mentioned this unwelcome advice issue among others). Nice job.
Jonathan…interesting isn’t it?
Your last sentence encapsulates the meaning of the phrase we all recognize as the first duty of a physician, “FIRST…do no harm!”
God Bless you and your family.
Your plea to the world: “If you’re doling out advice, whether it’s medical, financial or otherwise, do a little research before you do a lot of harm.”
My plea to the world’s ever so helpful persons is a bit different: OFFER NO UNSOLICITED ADVICE. Ever. Shush, already.
Let a person enjoy their morning coffee and the birds singing and their day as best they can. If they want your advice, they’ll ask.
Anyone who’s aware of your situation need reflect no more than five seconds to know you and your inner circle are already in constant contact with the best medical knowledge and standard of care that exists for a condition with so few cases a year.
True that some are desperate and gullible and so let’s all avoid dangerous misinformation that targets the vulnerable.
Excellent post. Thank you. 🙂
Jonathan, I went through similar when I was having cancer treatments. I am sorry you are getting more of it since you are a public figure. It has to be so frustrating. Still praying for you. Chris
Unfortunately truth is not valued in our times and misinformation reigns supreme.
We are in the mis-information age. People will take info they got from an obscure Internet post with little or knowledge of the credentials of the poster, and take it as the gospel.
It is very frustrating to knowledgeable people like Jonathan and especially to the medical community who must deal with this daily.
My daughter has a rare disability, and I can’t even count the number of people who have insisted we try this or that—some miracle juice, a faith healer in some distant place, or a secret cure that somehow every medical professional has overlooked. And it never stops. It’s exhausting, frustrating, and relentless.
Some people mean well, trying to ease their own discomfort. Others see an opportunity to make a quick buck.
And it never stops.
We wanted to scream, “We’re seeing the best doctors, taking the best treatments, and people are praying!”
But still, we hear, “Have you tried this? What about that?”
And it never stops.
This is a real problem, and I worry that many recipients of such unsolicited advice may be less astute than you in recognizing that it is nonsense, or even worse. When I practiced neurology, many of my patients with MS in particular seemed to receive similar sorts of inappropriate advice. You might find it interesting to read “Voodoo Science”, subtitled “The Road From Foolishness to Fraud” by Robert Park published in 2000. I highly recommend this book to anyone who is interested, or annoyed (like myself) by the persistence of snake oil salespersons and fraudsters. Hang in there Jonathan. In addition to the HD community you have helped to create, I suspect a good many of your fellow cancer survivors admire your leadership.
It must be really annoying. Since people don’t like feeling helpless, I suppose this gives them a way to feel they are doing something useful without considering the effect on the target. BTW, I quite liked the Blue Zones theory, but it’s been debunked.
When I was diagnosed with cancer and began treatment, I didn’t tell anyone. Only my spouse was aware. Some of the neighbors surmised I was very ill; struggling with a walker conveyed that to anyone who saw me.
I’m aware that many people are misinformed on a great many topics, and that deadly diseases such as cancer can evoke a strong reaction. That may be exaggerated by the age of the residents in our resort community. I’m of the opinion most of us mean well, but don’t know what to do when confronted with information such as my condition. I simply told everyone that I was in treatment and I can use their prayers. The medical prognosis was poor. That channeled the conversation into something that could be very useful, and empowering to all. Many responded positively and a number of prayer-groups were created for me in different locations in the US. I do think I’m alive by the grace of God.
I finally told the children after a year of treatment; they live quite distant and so were unable to observe me and were unaware. When I began immunotherapy I informed others of my situation. I could do so with a note of positivity, having survived radiation and chemotherapy. However, it is a façade. I am stable, but my cancer is rare and there have been no long-term trials. Survival rate is about 15%. That is better than 0% and the fact I’m still here has bumped the statistic up.
It is likely either the cancer or collateral illness will kill me and my life may be a year, or a few. However, my time here on the planet is drawing to an end. The very fact I am here today to write this is a miracle. I’ve come to terms with this and have decided to be gracious to others. It can be challenging and I admit I have had to bite my tongue and take pause at times. I’ve decided that it is no longer about me; it is about others.
My only advice speaking of my own parents would be to tell adult children earlier. I don’t think withholding really “protects” them and in fact can result in greater shock.
I can totally understand not wanting to be smothered though.
I observed the impact of my parent’s cancer illness on the family, as well as the early death of my twin and another sibling, both of health complications. In particular I’ve observed the reaction when individuals were told “I have cancer”. When the subject of health came up, I did discuss it. Otherwise I held back until more was known and I didn’t want to burden with the knowledge of my illness. I decided any information I provided was to be life-affirming and positive. Not everyone will agree with my decisions.
Norman, you and I are very different people. I could never have imagined not telling anybody — I’m not built that way — but I totally respect and understand your desire for privacy. My wife thought I overshared, but I learned that giving people the opportunity to do and say kind things is something they value, even cherish. It was worth the price I paid in hearing some stupidity as well.
I’m not at all religious, but my wife is a devout Buddhist with a strong international online community. One night in the hospital when things were a bit rough she opened her laptop to show me a live picture of a room in a temple in Tibet. Hundreds of people I will never meet had lit candles. She told me there were 14,000 of them burning. For me. That image and that feeling will stay with me forever. (Of course, they were likely burning for many others as well, but in that moment… wow.)
I share Jonathan’s hope for you, for the gentleness of your remaining time, but I will quietly hope for even more if you’ll allow. When I began then-new immunotherapy in 2016, there was no thought of survival, just the hope that it might extend my life a few months. The specialist who told me in 2017 that I was in full remission had never said it to a patient before. He saw these remarkable drugs create a trickle, then a wave. May it wash over you.
Thank you for being so open about your illness. I’m likely only a few steps behind you. I hope the months ahead are as gentle as you can reasonably expect.
Wow. That is incredibly crass!
Does your email client or server support filters? For the past few years I’ve kept my sanity, and my inbox much cleaner, by auto-filtering unwanted mail to the Deleted folder. I do a quick scan of it for any mistaken cases before deleting.
Unfortunately, while we live in the Information Age, it seems more likely to be known in the future as the Age of Misinformation. Bernie Madoff’s success is just one of many examples of how easy it is defraud the gullible millions looking for a Free Lunch.
Everyone has problems. Many are looking for someone, something, some group to blame. These folks will believe anything that supports their perception of their reality. And, they don’t want to hear anything that challenges it.
When I tell some of my friends who send me stuff that no, Abraham Lincoln didn’t really say/write some phrase, they actually get angry.
I don’t thing that there is any way to fix things. I no longer reply to email which contains garbage info….I just delete it. You can’t fix stupid.
And the scammers! I’m getting emails about unauthorized payments processed through my PayPal account and I don’t even have a PayPal account! And these emails (that don’t automatically go to Junk) can’t even be placed in the Junk folder or unsubscribed from. They have to be deleted one by one. Oh well. Modern life. We just have to try and focus on the good.
It is weird how people think that they’re capable of giving even remotely adequate medical advice, because they heard something or experienced something.
It’s offensive the number of grifters that sell hope to those facing their mortality, knowing that they’re selling nothing at all.
Jonathan, some people have an uncanny ability to invite themselves into our lives with advice that we haven’t asked for. Granted, there are a lot of ignorant people out there, But are they bad human beings or are they just different from you and me?
The platitude I usually get is “no one would ever know you have cancer”. Another one—“you sound good”. Makes me wonder, should I carve a big “C” on my forehead?
I’ve come to accept that human nature is outrageous at times. But with all the negative traits that humans tend to exhibit they are still an important element in the happiness game.
My best to you, always. Marjorie
Marjorie, you have a wonderful tendency to assume the best of people. But some of these folks are nothing more than scammers. The emails I receive often include “affiliate marketing” links that ensure they get paid if I was stupid enough to buy the snake oil they’re pedaling.
Jonathan, I hear your frustration. You are in a much more prominent position than I am, Which makes you vulnerable to daily onslaughts.
In addition, When people give you unsolicited advice, It’s tantamount to telling you you don’t have the ability to figure it out for yourself, Which I understand can be grating.
Throughout my illness— A journey which has been a lot longer than yours— It’s been imperative that I keep my stress levels down. It’s just easier for me to ignore the ignorant.
I am more than sympathetic to what you are going thr.
Though few studies have been done, to my knowledge, on the power of prayer, at least it seems like no harm is done. The subject may not even know that they are being prayed for. Sometimes I like the mysterious nature of not knowing whether something has “worked” or not. I hope today is a good day for you, Jonathan, and for all here, including me.
Praying for someone without getting their permission is intrusive. If you really believe it has an effect, why do you think you have the right to affect someone else unasked?
Jonathan, the closest I can come to empathizing with you came when I was divorcing wife number 1. At some point I gave up trying to explain to the advice givers why they were full of ….
Thanks for all you continue to do, and know that you’re loved.
Yes, this is Quinn worthy and I agree with you.
My frustration grows each day I look at social media and read the pure nonsense posted about Social Security, health insurance, investing and the economy not to mention billionaires are responsible for every bad thing in peoples lives.
Junk is passed along forever. Just yesterday I read a FB post claiming the only thing wrong with SS is “they” forgot to account for people who died before collected and the “government” didn’t contribute a penny. Think about that. It’s been circulating since 2017.
NOBODY seems to check or research anything, nobody uses common sense when they read nonsense.
But Jonathan, as frustrating and upsetting as it may be, I’m sure these folks mean well and are on your side. Actually, I think you should be flattered they care. You have made a positive difference in their lives.
American’s ignorance has no bounds.
Including when it comes to punctuation, it seems.
Yeah, which American is he talking about 😄
Jonathan, I’m so sorry you’re having to deal with this, but I am not at all surprised. When you first revealed your illness here, I posted a response predicting this irritating barrage based on my own experience with advanced cancer. I was sometimes not nice at all when people presented these “cures” unsolicited, and I’m afraid it’s exponentially worse for you as a public personage than it was for me as a private citizen.
I always believed that while there was an undoubted good-intentions motive to the advice I received, there was also a large dose of conspiracy-theory politics. A startlingly substantial number of Americans truly believe that a cabal made up of the FDA, the AMA, the pharma companies and treatment providers has actively worked to keep known cancer cures hidden from Americans because they are rolling in the financial rewards of current cancer treatments.
Unfortunately, there’s nothing new about this phenomenon — we older folks remember the 1970s mania over Laetrile, the chemical from peach pits and almonds that was touted as a cancer cure and caused tremendous harm from cyanide poisoning.
Whatever the motivation for the avalanche of advice, I sorrowfully predict it will not stop coming at you. All I can wish for you is patience in dealing with it.
Modern-day snake oil salesmen and their followers are a persistent frustration in my life as well. I even see the problem in healthcare professionals, among people who should know better.
I can’t imagine how frustrating it must be to get seemingly well-meaning emails filled with useless and even harmful advice. How can anyone think that an extract from seaweed kills cancer on contact? Or make the (easily disproven claim) that cancer doesn’t exist in Okinawa? It staggers the mind. I cringe every time I see these types of messages in the comments on your articles.
I don’t have words to express my deep appreciation for all you’ve taught, and continue to teach, me and others – not just about personal finance, but also about how to live and die, well.
Best wishes to you and your family.