When I first sat down to write this catch-up post, I started talking at length about the weeks that led to where I am now. After writing about half of it, I realized it really doesn’t matter. A part of why I have this cancer blog is so other people who are diagnosed with cancer (or who have loved ones diagnosed) can feel like they aren’t alone and also hopefully find helpful information. I want to get to that information–to catch up–as quickly as possible. After this, I’ll post about tests and procedures and staging and all of those details, and then start more timely (and less data-packed) posts.
For how I got here, though, let’s skip all the long details and go straight to TL;DR:
I’ve been cancer-free since 2012, also known to cancer survivors as NED: No Evidence of Disease. I’ve been clear on every screening (also called surveillance, which is an appropriately military name for hidden enemies trying to sneak up and kill you) and my last PET scan in 2013 was clear except for one spot in my nasopharynx the ENT considered a false positive (and he was right). In mid-October, what seemed like persistent pneumonia that resisted antibiotics really was persistent pneumonia… but it was probably able to resist antibiotics partly because it was protected by and thrived in a cavity behind a mass in my right lung, revealed by a chest CT ordered by my primary care physician (PCP). It’s currently considered Stage IIIa because of the size, and because one of the two involved lymph nodes is at the collarbone.
So the last 5 days have been spent in what I called Cancer Dash last time. It’s a flurry of diagnostic tests and meeting with various doctors, which I’ll describe in the next post. I made an appointment with the medical oncologist recommended by the UCLA cancer center and my PCP put in orders for a PET scan. He also sent the CT scans to Interventional Radiology for evaluation of whether the best method for biopsy would be CT-guided needle or bronchoscopy. It felt weird this time, like I was approaching diagnosis and treatment sideways, uncoordinated. It felt like different disciplines on a game development team making assets and programming and designing systems without a producer.
That night, I contacted the great radiation oncologist who treated me last time, Dr. Deepak Khuntia (Dr. Dee). He’d left active practice to become the VP of Medical Affairs at Varian, the company that makes many of the radiation machines that save lives every day. I emailed the info desk at Varian, asking if they could put me in touch with Dr. Dee for a referral in Los Angeles.
Even though he was at a conference, Dr. Dee responded that same evening, strongly recommending UCLA (where I was already being treated) and copying the Vice Chair of Radiation Oncology at UCLA to the email. The Vice Chair, in turn, confirmed that the medical oncologist with whom I had an appointment (Dr. Deborah Wong) was a great choice then added their lung specialist in radiation oncology, Dr. Percy Lee. Dr. Lee was attending the same conference but said he would be glad to take me on as a patient and he would meet with me the day he returned, the following Thursday. He also said I should have a brain MRI, and put in an order for one.
So the week that started with stubborn pneumonia ended looking ahead at five days of tests and meetings with oncologists. When he ordered the chest CT, my primary care physician ordered it without contrast because he was expecting a lung abscess or something similar. He wasn’t expecting to find cancer. My spouse, Charlie, wasn’t expecting cancer either. None of my friends were.
I think I was the only one half-expecting that result, once the pneumonia didn’t resolve. I knew that my specific type of head and neck cancer tended to go to the lungs if it spread. I’d thought the risk diminished dramatically after three years, but as I started my usual research, it turns out there were studies in 2014 starting to show that my specific kind of cancer (SCC HPV+) may recur at the site or with new lung primaries long after the three year mark.
Even though the discovery of cancer wasn’t a huge surprise to me, it was still a shock and a disappointment. I’d had clear screenings every time, and a clear PET scan in 2013. I’d felt fine until the pneumonia. And yet here I was, a little over three years after my original treatments ended, hearing “biopsy” and “staging” and “chemo” and “radiation” again.
But look at me, still talking when there’s science to do. Let’s talk about diagnostic tests, which in my experience are not as scary as they sound.