Linnea Olson is a lung cancer patient/advocate who attributes her extended survival (diagnosed in April of 2005) to innovative medical research and clinical trials. 

Extraordinarily mindful of what a gift each new day is, Linnea divides her time between her many friends, three children, art, writing, advocacy and a rather demanding little pup named Kumo.

Currently enrolled in her third phase I clinical trial, Linnea is concerned about the rights of clinical trial participants, with a focus on both increased access and realistic protections. She feels strongly that patients should be part of the dialogue regarding clinical trial design, as they offer both a unique and valuable perspective that should neither be taken for granted nor disregarded.

Linnea has been writing a blog about her experience with lung cancer since 2009. It can be found at www.outlivinglungcancer.com

She is also an active member of and huge supporter of the advocacy group Lungevity: www.lungevity.org

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Linnea’s Story

If you had told me that someday I would not only be diagnosed with lung cancer, but that I would also subsequently become dependent upon drugs, my response would have been ‘that’s impossible’.

You see, I never smoked. Nor was I ever tempted by recreational drug use. 

When, in my early forties, I developed a cough and shortness of breath, it never occurred to me that the cause might be lung cancer. My general practitioner ordered a chest x-ray, but when nothing obvious showed up, diagnosed me with adult onset asthma. If she had any inkling that my symptoms were suggestive of lung cancer, she failed to share those concerns with me.

I’d been using an inhaler for over two years when I developed pneumonia that simply would not respond to multiple courses of antibiotics. A CT scan of my chest was ordered and when my GP explained the findings she used the words ‘possible neoplasm’. I didn’t understand then that this was another way of saying cancer but after three days of hospitalization with intravenous antibiotics followed by a needle core biopsy, it was confirmed that I had non small cell lung cancer.

I was 45 years old and the youngest of my three children was seven. The only thing I really knew about lung cancer was that the overall five year survival statistics were only 15%.

Diagnosed at a local hospital, I quickly transferred my care to a major research center—one of the best decisions I ever made. My lower left lobectomy was followed by four rounds of adjuvant chemo. I was also tested for an EGFR mutation, then only recently identified as a driver in lung cancer. I was negative for the mutation but from this point forward, all of my care would be on the cutting edge.

And that is why, twelve years later, I am still alive. Although my cancer progressed to stage IV, I subsequently was found to be ALK+. The combination of surgery, chemotherapy and multiple phase I clinical trials—I am currently enrolled in my third—have extended my survival far beyond what ever thought possible. 

Last June I was able to watch my youngest child graduate from high school—he is almost through his first year of college. My other two children have grown into adults I am so very proud of. 

And me? I’m loving every moment of life. Although my lung cancer will never be cured, it is currently asymptomatic. In fact, my only physical limitations are those experienced as side effects of treatment.

I sometimes joke that I have now done a lot of hard drugs—platinum chemo among them. I am in fact now an addict, on a cellular level, as my cancer is driven by an oncogene. This means I will almost certainly need to continue treatment for the rest of my life. Peripheral neuropathy, GI disturbances, and cognitive impairment (primarily short term memory loss) are the prices I pay to keep my lung cancer in check. Recently I ordered a t-shirt with the cheeky statement ‘Drugs saved my life’. In my case it is absolutely true.

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Thank you, Linnea, for sharing your inspiring story!

If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!