Not exactly “sensible medicine” for Elle Macpherson’s breast cancer

A few days ago, I wrote about how the news was abuzz with stories about an interview that supermodel turned “wellness” entrepreneur Elle Macpherson gave to The Australian Women’s Weekly as part of the promotional campaign for her new book Elle. Specifically, the stories were about the part of the interview where Macpherson revealed that she had been diagnosed with some form of breast cancer in 2017, which had been surgically excised (apparently), but then made a decision that I wouldn’t consider “sensible” by refusing mastectomy, radiation, and chemotherapy. If you read my post, you’ll know that I was a bit confused about what, exactly, it was that Macpherson had been diagnosed with, given that at one point she referred to it as “intraductal carcinoma” (which is a premalignant, not a malignant lesion) but then said that doctors had recommended that she undergo mastectomy with reconstruction, chemotherapy, and radiation. Why? For one thing, chemotherapy is not in the treatment armamentarium for “intraductal carcinoma,” more commonly referred to as ductal carcinoma in situ, or DCIS for short. For another thing, radiation therapy after a mastectomy is also not in the treatment armamentarium for DCIS, even DCIS so extensive that it requires a mastectomy to clear. postmastectomy radiation is generally indicated for large invasive cancers that involve skin or muscle and/or have metastasized to the axillary lymph nodes (the lymph nodes under the arm, not DCIS.

Basically, what I was left with was a typical alternative cancer cure testimonial for breast cancer of the sort that I’ve discussed more times than I can remember since 2004, such as for Suzanne Somers, Dr. Lorraine Day, Hollie Quinn, and many others. Sure, in retrospect now that I’ve thought about it some more, I realize that the specifics of Macpherson’s actual breast cancer could have ranged from something as indolent as a small DCIS to a more aggressive cancer that required everything that oncologists and surgeons could throw at it in order to maximize Macpherson’s chances of long term survival. Given the vagueness and contradictory seeming nature of the description that she gave, it could have been one or the other or anywhere in-between, which is why I hope that I can get a copy of the book or the chapters in which she discusses her cancer. In any event, as is the case for the se testimonials, Macpherson eschewed conventional adjuvant therapy, such as radiation and chemotherapy, in favor of quackery. She’s fine now, thankfully, but not-so-thankfully she attributes her survival and good health to the quackery, not the surgery that removed her tumor. Instead of viewing herself as having been lucky that surgery alone was enough to cure her, she promotes a dangerous message that she “cured herself” by choosing “holistic” therapies, and the celebrity-obsessed news was more than happy enough to portray her as “brave”—rather than misguided—for having made that decision.

So what else is there to write about? It turns out that two of our favorite contrarian physicians, Drs. Vinay Prasad and Adam Cifu of Sensible Medicine, had to go all contrarian about Elle Macpherson’s story, by taking a position about patient autonomy that few, if any cancer doctors would disagree with but then dismissing the concerns about how her story is being used to promote quackery as far less dangerous than it is, all under the title Elle Macpherson Made a Reasonable Choice, and Naturopathic Medicine Did Not Help. No kidding, which is why I would argue that their article isn’t quite as “sensible” as they think it is.

Prasad and Cifu start by putting a not entirely unreasonable spin on Macpherson’s story that most oncologists can (sort of) agree with, but not entirely:

The lay media is abuzz with stories about Elle Macpherson, who admits in a new memoir to declining chemotherapy seven years ago. Although precise details are not provided, it sounds like Ms. Macpherson had localized or regional breast cancer and underwent surgery.

More or less. That’s about all we can tell. However, we have no idea what stage that “localized or regional breast cancer” was or what the risk of recurrence was based on that. There is, quite simply, not enough information provided in the media reports of the story that she related in her interview to make an educated judgment as to what her risk of recurrence and death might have been. As I pointed out in my original post, she did say that her tumor was estrogen receptor-positive and HER2-positive. HER2 positivity generally portends a poorer outcome and is now almost always treated with neoadjuvant chemotherapy (chemotherapy before surgery) that includes drugs targeted at the HER2 receptor, like trastuzumab and pertuzumab. Even in 2017, when Macpherson was diagnosed, although adjuvant chemotherapy (chemotherapy after surgery) dominated for the treatment of HER2-positive cancers with neoadjuvant chemotherapy being reserved for inoperable or locally advanced cancers, HER2 positivity still generally was a strong indication to give chemotherapy (plus trastuzumab) before or after surgery, and we know from Macpherson’s own interview that a mastectomy had been recommended.

Now see how Cifu and Prasad spin Macpherson’s decision to decline chemotherapy:

Chemotherapy is sometimes offered to a woman after surgery for localized breast cancer. This is referred to as adjuvant therapy. The goal of adjuvant therapy is to reduce the risk of breast cancer recurrence and improve survival. Without knowing the precise details, the magnitude of the benefit is typically 2-7%. To give some rough (and plausible numbers), 16 women out of 20 might be cured by surgery alone, but 17 women out of 20 would be cured with surgery and chemotherapy. Put another way, 20 women have to take chemotherapy so that 1 more is cured. And, sadly, 3 will have recurrence no matter what they do.

This might or might not be accurate, depending on the stage of the cancer and whether she had positive margins. It’s about as generic a description as one can find. What we generally say is that, on a relative basis, the benefit of chemotherapy is somewhere around a 30-50% improvement in survival. If the risk of recurrence is low, then the absolute risk is low. For example, if there’s only a 10% chance of recurrence, than a 30-50% relative risk would translate to just a 3-5% absolute benefit in terms of reducing the risk of recurrence. Understand, though, that we do give a lot of chemotherapy that provides that little benefit on an absolute basis. In that sort of case, Cifu and Prasad make a valid point. It is not necessarily unreasonable to refuse chemotherapy for such a small survival benefit, as long as the patient has been well counseled and understands the downside of making that choice. However, for a cancer at a higher stage, one with, say, a 50% chance of recurrence and death without adjuvant chemotherapy, a 30-50% relative risk reduction would translate to a 15-25% absolute reduction in risk, a much more significant benefit. Turning that down would be much less reasonable.

Still, I’ve long stated that a competent adult should be free to refuse any treatment she doesn’t want, as long as she understands the risks and likely outcome that result from making that choice, and the same goes for Macpherson, regardless of what the stage and absolute risk of recurrence and death were for her cancer (which, again, we do not know with any degree of precision). That being said, I must confess to cringing mightily when I read this passage, although not for the reasons you might imagine:

Elle Macpherson didn’t want chemotherapy and declined it. That is a personal choice. Some people might not want the toxicity or side effects and be willing to risk a higher chance of recurrent cancer. Alex Honnold gets to decide he wants to rock climb, Elle Macpherson can choose not to get chemotherapy. The media meanwhile barely understands this, and is generally critical of Elle saying she ‘refused’ or ‘disregarded doctors advice.’ That’s paternalistic and incorrect.

Our guiding principle in medicine today is shared decision making. A doctor provides what is known about the expected harms and benefits of therapy. The patients weighs these facts with her values and makes an informed decision about her health care. The strongest stand a doctor should take is, “you’re accepting a higher risk if you choose this strategy but that is your decision to make.”

Concluding:

Ms. Macpherson was lucky. She made a personal choice to take a little extra risk with her breast cancer to avoid the toxicity of therapy. We celebrate her good health.

As you recall, I said more or less the same thing, that I was happy that Macpherson was lucky enough that surgery was sufficient to cure her cancer—apparently thus far, at least, given that estrogen receptor-positive cancers can recur two decades later. Moreover, Cifu and Prasad completely ignored the nearly equally important point that Macpherson also refused radiation therapy. The risk of a local breast cancer recurrence at the site of the tumor after just a lumpectomy can be as high as 40%. Adjuvant radiation reduces it to the 5-10% range. That’s a huge difference. Granted, most local recurrences are salvageable with further surgery to remove the recurrence, plus radiation if none had been given before, but not all of them are. Some of them recur with metastases. I would argue that it’s not a good idea to refuse adjuvant radiation therapy, and I somehow doubt that Macpherson was aware of the risk she was taking by refusing further local therapy, despite her having consulted with “32 experts” (as the news stories reported). Maybe she did. Again, we do not know from the narrative in her book as related in her interview and in news reports last week.

Moreover, no one—and I mean no one—is arguing against shared decision-making between patient and doctor. However, to see Prasad and Cifu attack journalists for “paternalism” in anything made me laugh out loud. Remember, Prasad has told parents that they should refuse to comply with COVID-19 public health recommendations or mandates for their children—not that they should consider not complying or that they should undergo “shared decision making” regarding COVID-19 interventions. No! He portrayed parents who followed recommendations to mask, vaccinated, and social distance as sheeple, not as people who simply made a decision that he disagreed with but conceded that they had the right to make that decision. Dr. Prasad is also the same doctor who mocked a woman for being concerned about getting COVID-19, characterizing her fear as totally irrational anxiety and fear, a mental illness even. I also can’t help but remember how much contempt Prasad used to heap on skeptics before the pandemic, viewing our “debunking” of quackery as so easy as to be far beneath him, contemptuously dismissing it as “dunking on a 7′ hoop.” That goes beyond paternalism into bullying and contempt for those who come to different conclusions about the evidence regarding COVID-19 interventions and how they prioritize the balance between the risks of catching the disease versus the interventions designed to prevent infection and serious illness from infection.

Even though Cifu and he are not incorrect about shared decision making being the basis of good medical care, I can’t help but notice the disconnect. He’s far more sympathetic and forgiving when it comes to what he perceives as Elle Macpherson’s less-than-advisable choice to choose ineffective and quack treatments as “adjuvant” therapy for her cancer than he is of what he views as less-than-advisable choices to mask and vaccinate children to protect them from a potentially deadly virus.

But what about the quackery? This is what Cifu and Prasad have to say:

However, she credits her favorable outcome to a holistic approach, and that she found “a solution that worked for me”. We do think this sends the wrong message. It was not holistic therapy that saved her. She was among the 16 or so women out of 20 cured with surgery. Rather than pitching her wellness strategy, we wish she had used this opportunity to talk about informed decision making.

What the story of Elle Macpherson reveals most is that the media (both social and traditional) is nearly incapable of covering celebrity health with nuance and tact. Celebrities are either complete morons, dedicated to wheatgrass or acai berries, or heroes who stood up to the evils of modern medicine. Can we just be a little sensible?

You mean the way that Dr. Prasad was about parents who conclude that vaccinating their children for COVID-19, following mask mandates, and abiding by other public health recommendations? Or people who are still concerned about COVID-19 and would prefer not to risk catching it if they can avoid it? Dr. Prasad routinely portrays such people as completely unreasonable and irrational, driven by fear and anxiety rather than reason, and to him it’s perfectly fine to make fun of them and portray them that way. Yet he lectures those of us who are more critical of celebrities promoting deceptive alternative cancer cure testimonials that, because they come from celebrities, have more potential to mislead women into deciding to choose ineffective “holistic” therapies instead of evidence-based treatment, as imperfect as it can be? Seriously?

I also laughed out loud at Cifu and Prasad’s bland, oh-so-“sensible” statement that they “wish she had used this opportunity to talk about informed decision making.” Isn’t that rather the point? Seriously, the reason that alternative cancer cure testimonials are made is to promote the quackery that the person giving the testimonial used, not to promote something as uncontroversial, bland, and “boring” as routine shared decision-making that cancer patients and their physicians engage in every day. It’s also to tout how “special” and “brave” the person giving the testimonial was to have rejected what everyone was telling her to do in favor of choosing “what worked” for her (even though it didn’t).

Seriously, if you want a much more sensible article than Cifu and Prasad’s article about Macpherson, I recommend this one by Melissa Davey and Natasha May in The Guardian entitled, Crucial information missing in Elle Macpherson breast cancer story, experts warn. In it, they put everything in context based on what we know. My only quibble is that they seem to think that it was definitely an “intraductal carcinoma,” a lesion that has a very low risk of causing bad outcomes when treated properly, when I’m pretty sure it was not, given that Macpherson said her oncologists recommended chemotherapy, presumably with HER2-targeted drugs, more surgery, and radiation. If it had been just “intraductal carcinoma,” again, the recommendation would likely have been for endocrine therapy (an estrogen-blocking drug) and radiation without chemotherapy.

I speculated a bit in my previous post just what kind of not-so-sensible quackery that Macpherson might have chosen other than chemotherapy. You can read the previous post, but I guessed that she underwent some “alkaline diet” quackery and perhaps some supplements provided by the naturopath who works with her selling woo for her company Welleco. We also know that she apparently was under the care of a naturopath, plus a “holistic dentist, osteopath, chiropractor and two therapists.” I have, however, since learned more about just what it was that Macpherson used to treat her breast cancer, thanks to an article in, of all places, The Daily Mail, entitled Inside Elle Macpherson’s strict diet and wellness regime amid backlash over her ‘holistic’ cancer treatment. A lot of it sounds a bit speculative and based on what was known before about Macpherson’s beliefs in alternative medicine, but it nonetheless suggests that, in addition to unobjectionable interventions, such as regular workouts and getting better sleep, and ineffective but probably harmless interventions, such as infrared saunas and “grounding,” she also appears to believe in energy healing, acupuncture, and sound healing. and, of course, lots of supplements and “detox,” in other words, rank quackery.

In any event, leaving aside the utter hypocrisy of the ever-“sensible” Dr. Prasad for lecturing journalists and his fellow physicians for criticizing Macpherson and not viewing her decision just as “shared decision making,” as usual he and Cifu, in their effort to portray themselves as “sensible,” miss the point. Alternative cancer cure testimonials are not about stressing the importance of “shared decision making,” no matter how important that is in medicine. That’s why opining about how “disappointed” you are that Macpherson didn’t take the opportunity of her good fortune to emphasize the its importance is clueless to the point that Cifu and Prasad deserve (more) ridicule. Rather, alternative cancer cure testimonials are all about how patients like Macpherson unwittingly falling prey to survivorship bias to convince an audience that she (and not that nasty surgery), cured herself through her “brave” choices. She is thus, simultaneously both a victim of the quacks who persuaded her not to continue with evidence-based treatment of her cancer and a perpetrator, given that her celebrity alternative cancer cure testimonial is furthering the goals of the quacks who had victimized her. Remember, people, celebrities or not, who choose quackery and happen to be that unlucky one in 20 whom chemotherapy would have saved (to use Cifu and Prasad’s optimistic numbers) but who don’t survive don’t give alternative cancer cure testimonials.