Interview With Linnea Olson, Lung Cancer Advocate
Cure Forward is thrilled to have Linnea Olson as a guest on our monthly #CureChat. Our team had a chance to interview her about her lung cancer diagnosis and her important work as a lung cancer advocate.
You are a Lung Cancer Advocate. Can you tell us a little bit about your journey?
My step into advocacy began in 2009 with the inception of my blog. It was my original oncologist, Dr. Tom Lynch, who suggested that I write a blog. I’d been toying with the idea anyway and his encouragement provided that extra nudge to give it a try. His rationale was that I had both a positive outlook and an encouraging arc to my story, and that by sharing it I could give hope to other lung cancer patients. I also had not found anyone even remotely like myself in the lung cancer blogosphere (I am an atheist, non compliant, and consider myself and activist rather than an advocate) and I wanted my demographic to be represented.
What is the biggest challenge facing the lung cancer community today?
Well, certainly stigma. Our disease is so inextricably tied to smoking and for that reason, often thought of as something that we have brought on ourselves. It’s a dreadful line of reasoning, as no one deserves lung cancer. In addition, at least 20% of those diagnosed never smoked (I hadn’t) and an additional 40% are former smokers. Sadly stigma is one of the reasons that lung cancer research is consistently underfunded.
What’s your experience with Clinical Trials?
I wouldn’t be alive without clinical trials, so it goes without saying that I am a huge fan. So far, medical research has managed to keep pace with my disease. That said, each time I’ve entered a clinical trial—I’ve now been an early participant in three phase I trials—it has been with the keen understanding that when that experimental therapy stopped being effective, there was nothing waiting in the wings. In other words, a good deal of faith has gone into my participation. Also, when I enrolled in my first clinical trial, expectations were exceedingly modest. The hope was that the experimental agent wouldn’t hasten my demise and that my life might be extended by several months. Fortunately, the reality has been far sunnier for me.
However, the structure of clinical trials has not caught up with this new paradigm, and my good fortune has not come without additional risk. I have had far too many scans (44 of my abdomen alone—and my cancer never metastasized to my abdomen) which led to my becoming noncompliant—I refused to get any more abdominal scans beginning in January of 2016. And my most recent brain MRI showed a gadolinium stain in my gray matter—a finding so without precedence that no one can tell me what the consequences may be. So even with positive results, clinical trial participation is not without risk and the loss of autonomy as one moves from patient to participant can be truly frustrating. My own frustration has pushed me from advocate to activist, as I lobby for recognition that those of us in clinical trials are far more than our tissue.
What’s one piece of advice you’d offer to a newly diagnosed cancer patient?
First of all, realize that you are more than a statistic and that there are exceptions to every rule—particularly important advice if you are diagnosed with something like lung cancer, where the overall survival stats for five years are only 16% and once you are stage IV, as I am, those odds drop to 2%. Secondly (you said one, but this is important!), if at all possible, receive your care at a major cancer center. This is where numbers are important, as you don’t want an oncologist who is inexperienced in your type of cancer.
What do you think will be the biggest disruptor in the lung cancer clinical trials space in the next few years?
Me! Just kidding, but I am going to do my fair share of disrupting. For instance, I feel strongly that clinical trial participants should be compensated for their participation (and no, compensation would not be an inducement). I found a payment schedule online for healthy volunteers in clinical trials at the same hospital where I receive my care. It really angered me that not only are they often paid for blood draws and scans, but also for parking. Free parking has been a consistent ask on my part, and so far, there has been no response. But back to your question. I think it will be patients who will be the biggest disruptors. Ultimately, everything rides on our participation and as the stakeholders with the most skin in the game (literally) I want us to be viewed as actual partners. A good way to start would be to involve us intimately in the design of clinical trials.
Any messages you’d like to share with our audience?
Be your own advocate. Nobody cares about you as much as you do. Really. And don’t be afraid to ask for what you need or to say no when necessary. Patients have far more power than they seem to realize, but to exercise that power, one has to be an active participant in their own care.
Can you share your social media profiles for us to share with the Cure Forward community?
Please join us on March 9th, 2017 at 1 PM ET on Twitter for our #CureChat conversation with Linnea!
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