Tag: Misinformation

Elle Macpherson’s Cancer Story and the Missing Tumor Info

(Title image: Photo by Pierre Bamin on Unsplash)

Following on the heels of my Elle Macpherson post last week, I wanted to fill in some missing info…

To back up, former supermodel Elle Macpherson revealed that she took the holistic route when deciding to treat her breast cancer in 2017. However, most of the news stories that reported and offered opinions on her choices left out some critical information, as noted by this article in The Guardian (“Crucial information missing in Elle Macpherson breast cancer story, experts warn“). In this case, that information makes a big difference.

While it seems that Elle’s cancer was HER2-receptor positive, which suggests a more aggressive cancer, it was considered “non-invasive”, meaning it was contained within the mammary ducts. Often, this is referred to DCIS, or Ductal Carcinoma In Situ, and at this point those of us with personal knowledge of the disease will knowingly go, “OOooooooh.”

This is basically a “precancerous” mass of cells and often the treatments are more conservative. It’s considered stage 0. Yes, it becomes more dangerous if you do nothing, but clearly Elle did something: she had it removed.

DCIS is a stage 0 cancer, which doesn’t necessitate the most aggressive treatment.
(Photo by Bernard Hermant on Unsplash)

Beyond that, there are other conventional treatments offered, depending on how aggressively you want to go. This introduces the issue of potential overtreatment, which is gaining more attention among physicians and the public. It’s easy to throw the kitchen sink at anything that looks like cancer, but that increases the chances that patients unnecessarily experience damaging side effects. Not everyone needs to be smacked that hard with treatment.

So, given that Elle’s cancer was DCIS, her holistic treatment starts looking less extreme. In perspective, for stage 0, a radical mastectomy topped off with chemotherapy and other treatments leans towards overkill with minimal benefits, potentially affecting quality of life. So this is less about the types of Elle’s holistic treatments and much more about her cancer not requiring the same level of aggressive action as stage 1+ tumors.

However, very few of the news stories mentioned this. As a matter of fact, my own blog post last week might have confused the issue—I was writing without having all the facts. This underscores the importance of learning as much about your cancer as you can and understanding that your version of the disease may be very different from that of a friend with cancer.

In light of this, the pile-on regarding Elle’s treatment seems unfair…but only as it regards her personal situation. Because all the opinion pieces that came out against her choices, including my post, did so for a critical reason: that Elle’s story (“follow your heart”) may turn a cancer patient away from much-needed and beneficial treatment that can prolong their lives.

Get the facts, talk to your team, understand what you’re up against and what your risks are—yes, meditate, pray, exercise, change your diet. But don’t try to wish your cancer away.

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To clarify, Elle did indeed decline even less radical treatments such as endocrine therapy, so one could argue that she’s still taking a risk. We don’t have a crystal ball to determine whether this was the wisest choice, Elle believed it was the right choice for her.

Cancer Info with a Grain of Salt

When I posted a couple of weeks ago about research that shows the potential benefits of melatonin as a cancer-fighting agent, I tried to emphasize that even though you can find a scientific study that suggest promise for a given treatment, that’s not enough to run out and take it yourself.

Your medical team still remains your best source of information. They’re not only reading and processing info from clinical studies, they also have the inside scoop on what actually works on a long-term level. Not to mention that they’ll be able to prep you for treatment side effects.

I was reminded of this by an article that appeared in Cancer Currents, a newsletter from the National Cancer Institute at the National Institutes of Health, entitled, “Addressing the Challenges of Cancer Misinformation on Social Media“. (Note: the National Cancer Institute has an information service you can reach out to with your cancer questions: Cancer Information Service.)

So you found some miraculous cure on social media. But if it sounds too good to be true, it likely is.

Unfortunately, people are turning to questionable sources–such as the oh-too-familiar Dr. Facebook or Dr. Google–for medical information. This has been glaringly apparent throughout the course of the COVID pandemic, but it certainly includes people looking for information for serious diseases like cancer. Often, the individuals most are risk of succumbing to “shocking cure doctors don’t want you to know about” misinformation are also the most vulnerable: those who are diagnosed with late-stage or particularly aggressive cancers.

Who can blame them? When things look desperate, we all hope to find some “secret” that has been tucked away somewhere. And that’s not without precedent, as there have been old drugs repurposed for a disease that work surprisingly well. So it does happen. It’s just that the first place that information pops up is not on someone’s social media page, and it’s extremely unlikely that the “cure” will be a special juice cleanse or your dog’s flea medicine.

Admittedly, I am intrigued by claims that pop up in less-than-scientific places. However, my first trip to the internet is to review whatever current research is available on the subject in the National Institutes of Health’s PubMed, and to see how reputable the journals are in which the studies have been published. Again, the Cancer Information Service would be an excellent resource for those who would like succinct info without wading through research papers.

No matter how tempting it may be to believe that some great cure is tucked away on social media, make sure you get your oncologist’s approval before you start any treatment.

Hands down, your best line of defense again bogus claims remains being a informed patient and educating yourself about what exactly makes a study trustworthy. Who is funding them? What does the methodology look like? A claim from a case study that blood cancers can be cured by rubbing toothpaste in your eye that appears in the National Enquirer and was funded by a toothpaste manufacturer…well, I don’t think I need to tell you on how many levels that’s a non-starter.

But for the sake of illustration, here we go:

  1. It already sounds fishy and harmful.
  2. “Case study” means that only one subject was studied, so the results cannot be generalized to a larger segment of the population.
  3. National Enquirer is not a reputable, peer-reviewed scientific journal.
  4. The funder of the study will gain financially from the outcome, which means there’s a confict of interest.

Certainly, the “study” above is an easy call. (For the record, I totally made it up, but if it sounds like something you might have seen on social media, well, there you go…)

But it’s not always that obvious. And often the info comes via well-meaning friends and family who are desperate to help. Please, consult with your medical team before you try anything out of the ordinary.

If you’ve honestly gotten to the point where you feel your team is not operating in your best interest, get a second opinion. If at all possible, change to a different oncologist.

But if the second (or third or fourth) opinion of a reputable and experienced cancer health professional echoes the original opinion, and no one is on board with the treatment you want to try…it’s time to ask yourself why you are so determined to go against the advice of experts, and reconsider for your own sake.

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It is unfortunate that many people hold doctors in contempt. As someone with a sibling who is a physician, I can promise you that most doctors do not enter the medical field because they think it’s a “get-rich-quick” scheme. They do it because they are driven to help people and they put in long exhausting hours under stressful conditions to do so. Again, if you feel that your doctor is not listening to your needs, then please seek out another qualified physician.