Last week’s Keller/Adams social media controversy inspired countless blog posts, print articles and editorials. Like remoras to a shark, everyone hustled to attach themselves to this issue.
There were almost too many angles–the alleged issue of quoting from private correspondence, the potential ethical issue of Bill Keller apparently taking up cudgels on his wife’s behalf, the so-called “funeral-selfies” social media debate, the gross misrepresentation of Lisa Bonchek Adams’ current health and metastatic breast cancer in general, the lack of any observations on the apparent lack of diversity in patient advocate social media despite the terrible racial disparities in metastatic breast cancer in the United States and on and on.
One of my first priorities was working with MBCN’s Ginny Knackmuhs to address Bill Keller’s wrongheaded comparison of Adam’s cancer treatment vs. that of Keller’s 79-year-old father-in-law. Keller paints his father-in-law’s death using delicate pastels: The elderly man was unplugged from everything except pain killers and “allowed to slip peacefully from life… a humane and honorable alternative to the frantic medical trench warfare that makes an expensive misery of death.”
Adams, by contrast, is sketched with the blackest of charcoals: “She is all about heroic measures. She is constantly engaged in battlefield strategy with her medical team. There is always the prospect of another research trial to excite her hopes. She responds defiantly to any suggestion that the end is approaching.”
But that’s just not true! Adams was diagnosed about a year ago with metastatic disease. Her care isn’t extraordinary or “premium” as Keller wrote. In 2011, Dr. Gabriel N. Hortobagyi, director of the breast cancer research program at M. D. Anderson Cancer Center in Houston, told the New York Times the average patient may receive eight or 10 different treatment regimens in sequence. (RONI CARYN RABIN did a wonderful job; if you want to learn more about MBC, please read her 2011 “A Pink-Ribbon Race Year Long.” If only the Kellers had “perused” it…)
Adams’ pharmaceutical quiver isn’t empty–that wasn’t why she enrolled in a clinical trial. Many people with metastatic breast cancer take the same pain relief steps Adams did (radiation). This is hardly a “heroic measure” as Keller characterizes it. Most people with metastatic breast cancer do have a close working relationship with their oncologists. Keller is probably used to hearing stories of people with early stage cancer who have a finite chemo regimen and then return to their pre-cancer lives.
With metastatic breast cancer, one never “finishes” treatment. You are always on something–if possible, patients start with the least toxic option first. It’s not always crystal clear which drug a patient should use (or in what sequence). It depends on the subtype of the breast cancer, prior treatment, and many other factors, including patient preference. Bill Keller calls this a “battlefield strategy.” In my world it’s called “a doctor’s appointment.”
It is dangerous to make generalizations in the world of metastatic breast cancer. I have been living with MBC for four years and I haven’t had chemo yet. I am fortunate my low-volume of bone mets hasn’t done much–I have friends who have been on chemo for four years and even longer. Even oncologists–never mind mere journalists–find it difficult to offer people with MBC a prognosis. I think it’s pretty safe to say, however, that someone who is still writing and tweeting with Adams’ trademark verve and frequency won’t soon be shuffling off this mortal coil. From her vigorous and trenchant output, it’s very clear Adams understands and accepts that in all likelihood she won’t be cured.
Metastatic breast cancer unfortunately is not among the metastatic diseases that can be cured–like testicular cancer. Lance Armstrong had mets: his testicular cancer spread to his brain, lungs and abdomen. He had his last chemo 17 years ago and, in all likelihood is cured. Someone with metastatic breast cancer would be THRILLED to have lived 17 years with metastatic disease–of course, on the downside, they would almost certainly have been on chemo for most of those 17 years…
Testicular cancer treatment has been heralded as a triumph of modern medicine, with sustained response to treatment in more than 90% of cases, regardless of stage. In 2011 overall cure rates of more than 95% were reported, and 80% for metastatic disease—the best response by any solid tumor, with improved survival being attributed primarily to effective chemotherapy (cisplatin).
Unfortunately, that is not our story in metastatic breast cancer. Not today, anyhow.
People just do not understand this–including other patients with metastatic cancer. Consider Bill Saporito’s well-meaning but ultimately off-base online post for TIME. The journalist, previously described as “a five-year esophageal cancer survivor in 2008,” rallies to Adams’ defense with this paragraph:
Having once experienced stage IV cancer, I understand Adams’ desire to fight it with every drug that Memorial can throw at her. If they had told me to drink mercury I would have asked for a double—and keep in mind that in many drug trials that is essentially what’s going on: You get dosed with poison while the clinicians try to guess whether the poison will kill you or the cancer first. But patients are fully informed…
That first sentence really jumped off the screen. “Having once experienced stage IV cancer…” Once? Had?
We wish that was the case with metastatic breast cancer but with our Stage IV there is no past tense. You have it and you live with it. Hopefully a patient will have some periods of stability or maybe even no evidence of disease (NED) for awhile, but you never, ever can say “I had metastatic breast cancer.”
Excellent post, Katherine! It would be amazing to say “I HAD metastatic breast cancer”, wouldn’t it? But I get some wide eyed looks when I say “I have been living with metastatic breast cancer for 9 years”! Keep up the good work…
Hey, great name! Thanks for reading!
Very good summary of the problems in the Keller articles, and MBC too.
Oh how I wish I could say I “had” MBC!
~ Katherine (is it just me, or are there too many Katherine’s with MBC?)
[…] women, like Lisa Adams, Katherine O’Brien, and a growing number of others with MBC are changing all that. They are in the words of one […]
Katherine this is an excellent post. I am so glad you brought out the most important point lost by Kellergate- the misconceptions and lack of understanding about metastatic breast cancer. I wish people living with MBC could say they “had” MBC and are cured. So many articles have all the facts wrong when it comes to MBC. I wish these writers would wake up and read what you are saying, take their mistakes and write apologies with factual corrections including true facts about MBC, so people would see why we have to end this awful disease and understand the needs of everyone living with it.
Lol * kellergate * Susan!
Great read Katherine!
I think we are missing one tiny fact – that the Kellergate issue came about because of fear. Mrs. Keller had DCIS, and was terrified. She cannot get past it, which is why she hangs onto Lisa’s tweets, but like most people, understands very little about metastatic cancer. So in her fear she and her husband did assume that Lisa was dying and fighting too hard, and “oh by the way, that’s not what I would do” so they cancer-shamed Lisa. They, and as you pointed out, everybody ..missed the part where we have ups and downs with our treatment course – periods of bad mixed with periods of good. They think it’s just a downhill slide, when it reality it is a rollercoaster. At a liver metster going on three years, I’m in an up, a period of stability and (sort of) health. Two years ago I was in the hospital,quite ill, seemingly facing my last hours. It’s just the way it goes with metastatic breast cancer…, sick and healthy, hard drugs and easy drugs…ups and downs. But always and forever in treatment.
Now excuse me but today is my chemo day, after my visit with my radiation oncologist yesterday. Still have doctor’s appointments weekly, diagnosed 4 1/2 years ago….I know a relationship that long with an oncologist is not something Emma Keller would not understand.
Thanks again Katherine for your great response.
[…] of “feel-good” stories. Of course, we’ve also seen the other extreme–someone assuming ALL people living with MBC are on their deathbeds, which isn’t necessarily true […]
[…] ignore it in favor of “feel-good” stories. Of course, we’ve also seen the other extreme–someone assuming ALL people living with MBC are on their deathbeds, which isn’t necessarily true […]