Shared Decision Making

I met with my PCP, Dr. Pepper, a couple of weeks ago, to discuss a plan for lung surveillance moving forward. I had several things on my heart and mind that I felt we needed to plan for in the future specific to potential late effects.

I have several unique ‘things’ that place me at risk for not only for recurrent pneumonia but also lung cancer across time as I received an exceptionally high cumulative dose of chest radiation across the course of my treatment. This chest radiation for all intents and purposes rendered my left lung useless,

This last winter was particularly rough for me. I was sick the entire month of March with 2 cases of viral pneumonia in my left lung [and] almost hospitalized on a few occasions. I’ve also been struggling with aspiration pneumonia for a while, but especially these last few weeks.

You see, the radiation I was treated with left me with one functional lung [and] a significant decrease in my vital capacity. In addition, I have radiation-related scoliosis and left chest wall deformity that further restricts my ability to expand my lungs when I breathe.

My GI system is also affected with low motility in my esophagus [again, from the radiation] that means food doesn’t move in a timely manner to my stomach leaving fluid and debris [their words not mine] in my esophagus at all time. When you add reflux to that, you get an almost constant, silent aspiration into the left lung, a set up for infection.

After a thorough review of the literature [and] the paucity of recommendations, Dr. Pepper [and] I decided that we needed both a GI and a pulmonary plan of attack.

I saw a GI specialist last week and I was very pleased with him; so much so that I think I’ll invite him to join my team. He recommended that we do an upper endoscopy and a colonoscopy to rule out squamous cell carcinoma in my esophagus and polyps, cancer in my colon.

Assuming all the results are normal which they were 4 years ago when I last had these screenings, he is recommending that we repeat procedures at 5-year intervals in the absence of symptoms.

On the lung cancer front, I had a CT of my chest yesterday as a follow-up to the the one performed in March to ensure that there isn’t any evidence of lung cancer.

We are not expecting any surprises.

We also decided that my risk is at least as high as someone who’s been smoking more than a few packs of cigarettes for more than a couple of decades, so I will have a low radiation CT of my chest every year as lung cancer surveillance.

Sadly, there aren’t guidelines specific to lung surveillance, so we are relying heavily on common sense [and] age-related risk guidelines to serve as late effect surveillance too.

Survivors, I share my life, my lived experience in the hope that you will benefit from the path I’ve traveled.

If I could offer just one piece of counsel, it would be to find an excellent primary care provider who will partner with you to meet your unique healthcare needs through shared decision making; this is a grey area, thus an open dialogue is essential, one within which your input is heavily considered in all decisions.

While the Children’s Oncology Group has developed survivorship guidelines to guide clinicians in making these decisions, you need to educate yourself on your treatment history, your future risks, and the recommended screenings; however, you also need to lead a healthy lifestyle: nutrition, exercise, stress reduction, and social connectedness.

I am responsible to maintain a clean, anticancer approach to my diet, to exercise, stress reduction, and social connectedness through intentional relationship building with those who celebrate me not merely tolerate me.

Survivor, YOU must ACT on your own behalf; you must commit to LIFELONG follow up as a matter of optimizing your health and wellness. You are your greatest champion, your best advocate: THIS day, every day!

Early detection is the key to early intervention, so JUST DO IT!

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This is me with Dr. Pepper, and yes, though she be but little, she is fierce!

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