He Used the C Word

This weekend I attended a regional lung cancer patient summit sponsored by the Lungevity Foundation in Columbus, Ohio. I got to meet other people with lung cancer, as well as care- givers, researchers, and advocates. Many of the lung cancer patients had metastatic disease (like me) and were multi-year survivors, so it was reassuring to meet other folks on targeted therapies and immunotherapies who are doing well.

We got to hear an inspiring keynote talk from Dr. David Carbone, who is director of The James Cancer Hospital Thoracic Oncology Center at The Ohio State University, and who used to work in here in Nashville at Vanderbilt. Dr. Carbone had good news for us, but first, he gave us a little historical background, most of which I already knew. Back in the bad old days, in the 1990s, when he first began treating lung cancer patients, there wasn't much to offer by way of treatment to those with metastatic disease. Patients with late-stage lung cancer usually died within a few months of diagnosis. But, things have really changed for the better, and with new treatments, many of us with metastatic disease are living years (not necessarily lots and lots of years, but at least we're using a plural form) instead of months. Folks in attendance were living proof of that! Dr. Carbone also said that he'd seen patients with advanced disease have complete responses to treatment, especially immunotherapy, and they are seeing durable responses beyond the five-year survival mark, even after the treatment has stopped. So....Dr. Carbone said that it might even be possible to talk about some of these patients as being cured of metastatic disease. Uh huh. He used the "C" word. Not for a lot of patients. Just a few. But cured. Of what had previously been an incurable metastatic disease. So that was good to hear.

As a rule, oncologists are trained to say to patients with metastatic lung cancer "you have an incurable cancer, but it is treatable." They no longer use the word "terminal." We are told that "each person's cancer is different", and the hope is our disease can be managed as a chronic illness, that we'll move from treatment to treatment  for as long as we can, until we run out of options. And for the most part, that is still true. And for the most part, we still risk running out of options, especially those of us who are on "breakthrough" and "cutting edge" therapies. That's the thing about cutting edge; it means you're on the edge.

The genetics of lung cancer are more complicated than they are for some other cancers; there are different types of lung cancer, and over 300 possible genetic drivers for most lung cancers. Plus with targeted therapies, new mutations develop resistance to treatment, so it's kind of like a crazy game of wack-a-mole trying to keep the disease pinned down.

But Dr. Carbone's optimism was contagious. I hope a cure for lung cancer will be too.

I Have These Conversations

Every once in awhile I find myself in a conversation about cancer with someone who, upon learning my diagnosis, holds forth on the elaborate big pharma conspiracy to hide the cure for cancer so that we'll all have to keep paying for expensive treatments that only make us sicker. I'm told, for instance, that studies on intravenous use of Vitamin C to cure cancer have been suppressed (they haven't been; I've read them) because they prove that this simple technique cures cancer (it doesn't) and would put big pharma out of business (it won't). Oh, and it's not just big pharma, I'm told, that is part of the conspiracy to keep the cure away from patsies like us desperate cancer patients who show up for clinical trials, scans, chemo, radiation, targeted treatments, immuno-therapies, and surgeries. In fact, as my would-be enlightener will point out, the entire medical establishment aims at keeping us all sick unto death for the sake of profit.

And I get it. Greed is ever-present, and no industry chugging along in a capitalist culture is immune from tendencies toward profiteering. (Which is why, by the way, we might want to give more scrutiny to the fact that we encourage for-profit models in areas like health care, elder care, day care, education, and other efforts on behalf of the greater good, but that is another argument for another day.) Yes, there have been plenty of scandals involving the pharmaceutical industry, and yes, many hospitals, clinics, and ERs are full of repeat customers because treatments have poor outcomes due to myriad failures in the way we, as a culture, practice medicine and view wellness. Bureaucracy, over-regulation, under-regulation, terrible communication, and outright incompetence seem to prevail and offer us good reasons to distrust the health care industry. The inequities built into our health care system alone make it a scandal, and ethical questions about clinical trials and treatment development abound.

But working both inside and outside that entirely dysfuntional machine are some pretty dedicated cancer researchers who, if they could find a panacea for all cancer, would gladly wash out their petri dishes and turn their time and talents to other useful things. So here's what I have to say to the tipsy party guest who regaled me with his cancer-cure conspiracy theories a few nights ago. Read the actual medical literature. Go to a few cancer conferences like those sponsored by ASCO  or to patient summits like those offered by The Lungevity Foundation. Talk to some researchers. Talk to more patients like me who participate in clinical trials. See what research projects non-profit foundations are funding. Visit a patient advocacy site like The ROS1ders. Cruise the listings on ClinicalTrials.gov hoping for a miracle cure. Learn that "cancer" isn't one thing, that its cure will never be found in one silver bullet or in prevention-only strategies, but rather in each data point collected, each pattern detected, each genetic code cracked.  Cancer research is a molecular, genetics, big data long game now. And if you, dear reader, know someone spouting ill-informed notions about the Great Cancer Cure Conspiracy, suggest that what that person is doing, rather than enlightening anyone, is diminishing the existing and ongoing research that really is curing cancer, one clinical trial and one patient at a time.

Eighteen or One Hundred?

I know a hundred people, at least. Well actually I know a lot more than a hundred people, but for the sake of argument I'm going to stick with that number.  And by "know",  I don't mean "know well". I mean these are just a hundred people who are sort of in my regular orbit, some of whom I know well, others, not so well. I'm guessing, too, that maybe most of us know at least a hundred people – friends, family members, people from work or school or yoga class, the regulars at the coffee shop, a favorite barista, a hairstylist or barber, the waitress at the breakfast joint who calls you baby. Okay, let's count some of the social media friends; we just like each other's posts, and somehow, these people in cyberspace have become part of that crowd of one hundred.

So think about those hundred people. And now, imagine (God forbid!) that they have all been diagnosed with lung cancer. And fast forward five years. Only eighteen of them (statistically speaking) will be alive. 

That's right. According to the most recent statistics, only 18% of people diagnosed with lung cancer live longer than five years. And that's an improvement over a number which hasn't changed much in a few decades.

I was pretty shocked when I read that number. And the statistics are even worse for someone like me, diagnosed in a late metastatic stage, which also happens to be the most common stage for diagnosis. Why is the survival rate so low? There are a number of reasons. We don't routinely screen for lung cancer in the way we do for other cancers to detect and treat it early; we don't fund lung cancer research at the levels that we fund research into other types of cancer; lung cancer symptoms rarely present in an early stage, so by the time they are diagnosed, many lung cancer patients already have incurable metastatic disease. Likely the overarching reason for all of these issues is that lung cancer is still a highly stigmatized disease due to the mistaken belief that only those with the poor health practice of cigarette smoking will get it.

Last year at this time I did not have the ability to recite lung cancer statistics off the top of my head, nor did I ever think that I'd be included in those statistics. I know too many lung cancer numbers, and make myself obnoxious at dinner parties reciting them.  But, I refuse to accept the grim prognosis those numbers tell. The pace of research is picking up, sustained by a number of organizations like The Bonnie J. Addario Lung Cancer Foundation  and Lungevity,  which are focused on ending lung cancer. I think our chances are improving all the time. In fact, I'd like to think that when I celebrate my five-year Cancerversary, I'll know at least a hundred other people with lung cancer who are celebrating theirs.