Elizabeth Edwards and Kim Tinkham: A tale of two victims of breast cancer

Two women died of breast cancer yesterday. One was named Kim Tinkham. One was named Elizabeth Edwards.

In some ways, these women were similar. True, one was older than the other, but both of them died far sooner than they should have, one at age 53, the other at age 61. Both engaged in activism about breast cancer. Both were ambitious, driven women. Both died in the presence of their friends and family. Both died within hours of each other. Both demonstrated the implacable killer that breast cancer can be.

There the similarities end. One of these women (Kim Tinkham), for example, died because she chose quackery instead of effective therapy. The other, Elizabeth Edwards, died in spite of choosing science-based therapy. I expect that it will not be long at all before promoters of quackery like Mike Adams come out of the woodwork, as they frequently do when a celebrity dies of cancer, sometimes to truly despicable extremes. They will come out and claim that, because Elizabeth Edwards chose standard-of-care treatment but ended up dying anyway, science-based medicine is useless. At the same time, some will decry criticism of the quack whose nostrums deprived Kim Tinkham of her one best chance at surviving her tumor because women die every day of breast cancer, as though that were a valid reason, as though the situations were equivalent.

Let’s take a look at Elizabeth Edwards first. Edwards, as you recall, was married to former Senator, 2004 Vice Presidential candidate, and 2008 Presidential candidate. This time was the time when Elizabeth Edwards fought her battle with breast cancer:

She was first diagnosed with breast cancer in 2004, in the final days of her husband’s vice presidential campaign. The Democratic John Kerry-John Edwards ticket lost to incumbent President George W. Bush.

John Edwards launched a second bid for the White House in 2007, and the Edwardses decided to continue even after doctors told Elizabeth that her cancer had spread. He lost the nomination to Barack Obama.

I wrote extensively about the recurrence of Elizabeth Edwards’ breast cancer not long after it happened in 2007. In brief, Edwards was diagnosed with bone metastases, one of the most frequent sites to which breast cancer metastasizes. At the time, I discussed Edwards’ likely prognosis, pointing out how variable breast cancer biology can be and, in particular, how not all stage IV breast cancer is created equal. At the time, I observed that the median five year survival for metastatic breast cancer is on the order of 20%, with a median survival in the range of 16-24 months. However, by report Edwards had low volume disease only in her bones and no other organs (although it was unclear to me from reports whether she also had lung metastases). If she had bone-only disease, it would have implied a better, with some series reporting median survivals higher than 40 months. Moreover, from what I could discover, Edwards apparently had a stage II cancer that was estrogen receptor-positive and HER2-negative. In retrospect, Edwards probably did either better than a woman with stage IV breast cancer would be expected to so, except in the case of a woman with bone-only disease, in which case she probably lived fairly close to what would be the expected median survival. Her total survival was approximately six years from the time of her original diagnosis.

Either way, it saddens me greatly that Edwards’ life was 20 or 30 years shorter than it should have been, thanks to breast cancer.

Now, a cancer quack would argue that Edwards “only” lived six years. He would complain that science-based medicine failed to save her. He would argue this as though the failure of conventional medicine to save Elizabeth Edwards somehow validates whatever quackery he advocates. We’ve already seen it in the comments in my post from Monday about Kim Tinkham (whom we’ll get back to soon enough) and my call for everyone to remind Oprah that Tinkham has died because of choices facilitated and encouraged by Oprah’s promotion of pseudoscience and quackery on her show.

So what did Elizabeth Edwards do with the time she had? Among many other things, including helping her husband run for President, this:

Elizabeth Edwards had focused in recent years on advocating health care reform, often wondering aloud about the plight of those who faced the same of kind of physical struggles she did but without her personal wealth.

She had also shared with the public the most intimate struggles of her bouts with cancer, writing and speaking about the pain of losing her hair, the efforts to assure her children about their mother’s future and the questions that lingered about how many days she had left to live.

And, yes, she did pursue science-based medical therapy, and she did not survive. She did, however, try her hardest and choose the most effective therapy out there that we yet know about. She did it with class and clear-eyed knowledge of the risks and benefits.

Contrast this to Kim Tinkham. For whatever reason, when confronted with her diagnosis, instead of considering what needs to be done and making a cold-eyed assessment of the risks and benefits based on science, Tinkham embraced the New Age mystical woo known as The Secret. That very same New Age mystical woo led her to Robert O. Young, a man who claims that cancer is not a disease but rather a reaction to cells “spoiled” by too much acid and promised her that she could survive her cancer if she followed his “pH Miracle” lifestyle. This includes an “alkaline diet” and sodium bicarbonate, among other things, even though there is zero reliable scientific evidence to support Young’s claims that cancer is caused by “excess acid” or that “alkalinization” will cure it. However, as I pointed out, Tinkham did not want surgery and was clearly afraid of chemotherapy. That fear led her to reject her only good chance at survival, even though science-based medicine offered her a good chance of survival. Unfortunately, Tinkham made this decision even though she was clearly intelligent. However, somehow, something about The Secret and Robert O. Young’s acid-base woo resonated with her to the extent that it struck her as more appealing and reasonable than science-based medicine. The reason, I suspect, is that she was the type of person who needed answers. Remember, she wasn’t satisfied that conventional doctors couldn’t tell her why she got this cancer. Even though conventional doctors could treat it with a fairly high likelihood of success, they could not tell her with 100% certainty the answer to the question: Why me? Robert O. Young did not have the answer to that question, but he was able to convince Ms. Tinkham that he did, and she believed him.

You might remember that I estimated Tinkham’s chances of suriving ten years at around 50-50, In retrospect, it occurs to me that I probably made a fairly pessimistic estimate of the likelihood of Tinkham’s survival if she accepted therapy. Not all stage III is the same. Depending on other characteristics of her tumor, Tinkham might have had as high as a 70% chance of surviving 10 years or as low as a 30-40% chance. So I split the difference in my original (and admittedly) very rough estimate. Looking over her story again, I think that, in retrospect, Tinkham probably had one of the more favorable stage III tumors, which, if true, would mean that her chances were probably on the order of 60%, possibly even higher. Compare this estimate to an estimate of her odds of survival in the absence of treatment, which was probably no more than 3.6%. In essence, Tinkham chose to throw her life away. She was simply fortunate enough to have taken nearly four years to do it, lasting longer than the estimated 2.7 year median survival of untreated breast cancer. Yes, it is possible, albeit unlikely, that Tinkham did not have recurrent breast cancer. (After all, I do not have access to her medical records.) It is, however, very likely that she did, particularly given that she was described as having “cancer” in the liver, lung, and bone, the three most common sites to which breast cancer metastasizes.

Yes, unfortunately, despite choosing two very different courses from each other, both Kim Tinkham and Elizabeth Edwards died of their disease yesterday. This happened even though Elizabeth Edwards did the right thing to treat her disease and Kim Tinkham did the wrong thing. What does this mean?

Nothing at all, at least in terms of proving that “alternative” medicine should be taken as seriously as science-based medicine.

What we have are two anecdotes that both end badly. In the case of Kim Tinkham, we know from the biology of breast cancer that her choice virtually guaranteed that the course of her disease would eventually end in death. In contrast, assuming that Elizabeth Edwards did indeed have a stage II tumor, she should have had a roughly 80% chance of surviving ten years after her cancer diagnosis. The tragedy is that Edwards was, through no fault of her own, on the “wrong” side of that survival curve. Based on random chance alone, she was one of the unlucky 20%. Unfortunately, in the case of early stage breast cancer, because the vast majority of women survive, we all too frequently forget that a few still do die of their disease. In any case, The tragedy of Elizabeth Edwards’ death from breast cancer does not “prove” that science-based medicine is ineffective any more than the facts that seat belts and airbags do not save everyone who gets into a major automobile crash and occasionally there are people who even suffer injury and death due to seatbelt or airbag injuries mean that seatbelts and airbags do not work to save lives. Rather, it simply reminds us that even some women with favorable breast cancers still die of their disease, even after we throw everything we have at it. It also shows that we still have considerable room for improvement in our treatment of breast cancer. It shows that cancer is a formidable foe that we have not yet entirely beaten.

It does not invalidate science-based medicine or in any way validate quackery. It does not demonstrate that Tinkham was wise to choose her woo or that Edwards was a brainwashed dupe to choose conventional science-based therapy.

It is also instructive to compare the practitioners who treated Elizabeth Edwards with the one who “treated” (if you can call it that) Kim Tinkham. I’ll leave aside the obvious difference that the practitioners who treated Elizabeth Edwards were renowned cancer specialists using the latest in Science-Based Medicine and the other practiced rank pseudoscientific quackery, although that difference can’t be ignored. No, I want to contrast how these practitioners counseled their patients. Although I can’t know for sure, it’s very likely that Edwards’ doctors laid out the treatment options, the odds of success for each one, and their recommendations. When her cancer recurred in 2007, judging by the statements Edwards has made to the press and what she reportedly wrote in her book, they were quite honest that her disease was no longer curable and that all they could do at that point was to delay its progression and palliate her symptoms as they showed up. In the end, they told candidly when there was no longer any hope and even apparently told her that it was “pointless” to continue therapy. I have no way of knowing whether they waited too long to come to that point and suggest hospice. Possibly they did, given that Edwards only lived a day or so after announcing that she was discontinuing treatment. In any case, science-based practitioners know that cancer is a formidable foe and that we don’t always win, even against early stage breast cancer. We’ve all seen patients recur with stage IV disease. Usually, we know our limitations. We say to patients like Elizabeth Edwards, “I’m sorry. There’s nothing more we can do for you. I wish there were.”

Contrast this to the “practitioner,” Dr. Robert O. Young, who “treated” Kim Tinkham. By Tinkham’s own reports, Young promised her that he knew the cause of cancer and that it was treatable with an “alkaline” diet and sodium bicarbonate to “alkalinize” her blood. He told her she didn’t need surgery, chemotherapy, or radiation; indeed, if his website and blog are any indication, he probably told her that they would hurt her by making her more “acid.” Apparently, based on Tinkham’s own reports, at some point Young told her her tumor couldn’t hurt her, even though it was still there, because she herself said that in an interview. He also used her testimonial on his website and YouTube channel to sell his woo and, if a comment on one of his YouTube video pages was an accurate representation of what he said, apparently continued to do so, leaving the Tinkham interview videos on YouTube channel long after he knew that Tinkham was dying. In his response, instead of taking responsibility, young implicitly shifted the blame to Tinkham, claiming that she told him when she called him to let him know that her breast cancer had recurred and that she was dying that she had not “lived an alkaline lifestyle” lately. He tried his best to absolve himself of responsibility, claiming that he hadn’t seen her much in several years, even though he taped a lengthy interview with her in early 2010. When confronted with the public revelation that Tinkham was dying, Young abruptly removed all the videos, save the “abridged” edition, which appears to be a short compilation of highlights of the hour long interview.

In other words, his words and deeds after learning of Tinkham’s relapse indicate that Young was desperately trying to duck responsibility, in essence saying that it’s Tinkham’s fault that she died because she didn’t follow his regimen closely enough or didn’t believe enough and that, even if she did, he hadn’t seen her much in years anyway.

One other question comes to mind. It’s almost certain that, when informed of their diagnoses, both Kim Tinkham and Elizabeth Edwards felt the same emotions, the same fear of their disease, the same worries about whether or not they would live, the same anxiety about the treatments that were to come. Yet one managed to keep her rationality about her and choose science-based therapy, while the other retreated into a world of fantasy, in which she believed in The Secret and relied on a quack peddling quackery so bad that it doesn’t even qualify as pseudoscience. One maximized her chances of survival, while one rejected her one best chance at survival. The only other difference between the two was that one was simply unlucky and one was lucky enough to last longer than expected with in essence no treatment. With that in mind, my question still remains: Why do people run into the arms of quacks, particularly in the case of being diagnosed with a treatable disease, even if life-threatening? More importantly, how can we as doctors try to facilitate the understanding of cancer biology and science-baed medicine so that it’s more likely that patients will be like Elizabeth Edwards and less likely that they will be like Kim Tinkham?