Many would think it gets easier after the first few times of visiting the doctor to get your scan results, but I still get anxious every time I’m in the office waiting for Dr. Hall to come give me the results of my latest scan. Last time I went to UVA, I learned there is actually a term for this – “scanxiety”. Luckily, Dr. Hall has always been great about giving me the results first thing when he enters the room because he knows how nerve-wracking it can be. This last visit, things continue to look good! This visit was very similar to prior appointments: I got my results, had a lengthy discussion about the studies / advances in treatment and research, and had a quick physical check-up.
One of the things we talked about was lung cancer advocacy and support. Now that I’ve had over a year to get back to “normal”, I’ve been trying to figure out how to get more involved in the community and understand what is going on scientifically. He pointed me to some great resources, including ALK positive, a patient-driven support group, and LUNGevity, a lung cancer-focused non-profit organization.
Since then, I have joined the ALK positive Facebook group. All my friends, family, and colleagues have been very supportive since I was diagnosed, but it is a very different experience when you can talk to people who are going through the same thing you are and asking the same questions you have. It has been an educational experience and has opened my eyes to the many facets of lung cancer that I had not thought about previously, such as different regimens for monitoring disease progression and advances in lung cancer treatment that I may have never been aware of if I hadn’t joined the group (e.g. increase frequency of MRIs for the brain since ALK mutated lung cancer tends to metastasize there, monitoring of progression through blood tests). In my quest for advocacy and support, I made Avery a minor celebrity when my story was featured on their website (https://www.alkpositive.org/treatment-options/)
I also looked into LUNGevity and learned that they hold an annual International Lung Cancer Survivorship Conference that brings together patients with doctors and other scientific experts in the field. The conference is comprised of 3 summits that you can choose from: HOPE Summit for newly diagnosed/first time attendees, COPE Summit for caregivers, and Survivorship Summit for advocates and survivors who are interested in more advanced topics. Obviously, given my field of study, the Survivorship summit interested me the most with topics that include advanced research/clinical trials, dealing with progression, cancer and careers, and advocacy opportunities. This year, the Conference in in Washington DC (just 2 hours away) and I plan to be there!