An unexpected PET scan

After my CT scan in October that showed a metastatic tumor in the upper right lobe of my lung, I scheduled a follow-up PET scan for 8 weeks later, to coincide with my previously scheduled Opdivo infusion in mid-December. The Friday before Thanksgiving, however, I spoke with Dr. Andrea Apolo, the head of bladder cancer research at the National Institute of Health’s National Cancer Center. She has been following my case for years and had just reviewed my October CT scan. She suggested that I should be able to get a PET scan after only six weeks. I decided to ask my Kaiser oncologist in Virginia if I could get the scan at a Kaiser facility in Denver, since I was going to be in Utah during that week (and Kaiser isn't in Utah). It took a few phone calls and emails to pull it off, but everyone cooperated to schedule a PET for me on Wednesday November 28 at a Kaiser facility in Lonetree, south of Denver.  A roundtrip Southwest flight for the day was less than $100 (Frontier was $20 cheaper, but I refuse to fly that lousy airline if there is any other option.)

Yesterday, my daughter Kirsten met me at the Denver airport, and a we were able to spend the day together. She and her boyfriend had recently decided to tie the knot, and yesterday they asked me to officiate. I said I’d be honored to do so, as long as I was still alive. The wedding is planned for next September, but 10 months is on the long end of a worst-case scenario of my metastatic cancer going full-tilt and nothing succeeding in slowing it down. It may seem strange to those who have not lived with an uncurable metastatic cancer, but my family is comfortable with talking candidly about the elephant in the room. Plus, it makes for great opportunities for some dark humor.

We arrived at the Kaiser Lonetree facility, checked in and were sent upstairs for a glucose test. But when my number was called, the tech told me that my scan had been cancelled because the machine was broken. But it was working when they checked me in, I said. Not her problem. Go away. Next! I went back downstairs where the radiology receptionist confirmed that the machine had once again quit working – apparently it had been on the fritz for several days. A technician would come out and discover someone had tripped over the cord and unplugged it or tried to reheat a leftover turkey sandwich or put another quarter in the slot or whatever. Could they reschedule me for another day? No, I flew here specifically for this scan and was flying out tonight. Not her problem. Go away. Next! But I didn’t go away. I asked her call the other Kaiser facilities in Denver that had PET machines and see if they could work me in. Instead she gave me the number of her boss, then got up and walked away.

After peeling my jaw off the floor, I called the boss and got a generic voice mail. Halfway through my blunt message it dawned on me that this was probably not an actual Kaiser employee, but likely an ex-boyfriend of the receptionist. I ended the message, shoulder surfed into the locked offices behind the receptionist, walked into the scheduling office, sat down and explained my situation to the surprised employee. I asked her to call the other Kaiser facilities and get me worked into their schedule for today. She said she's try and I said I'd sit and wait. Downtown Denver couldn’t do it, but the Lafayette office north of Denver could get me in at 5 pm. Great, I said. But the Lafayette office said that I’d have to be there by 4 to get the FDG contrast, and there wasn’t time since it was an hour’s drive and it was already past 3. Give me the contrast here I said. She said she couldn’t do that. Call your pharmacy and ask I said. She called the pharmacy. Yes, they would do it. I asked her to call the lab and authorize the glucose test, and that I expected the contrast to be ready when I got back. And it was. Sometimes you just need to be persistent in your self-advocacy.

Kirsten drove me up to Lafayette on the north end of Denver, and I was immediately walked back to the scanner, laid on the table, and nuked. Kirsten and I chatted about wedding planning as the tech burned two disks with the scan images, then were on our way. Since I hadn’t eaten at all, Kirsten took me to Brothers barbecue where we each ordered the two meat platters. There is something about eating good barbecue with your adult kid that warms the heart. Or maybe it was the spicy sauce. But having my daughter accompany me for the day made the madness worthwhile. I flew back to SLC and arrived in Huntsville at 1 am this morning.

After awaking, I emailed my Kaiser oncologist in Virginia about my having the scan, and asked her to email me the reading once she received it. I also mailed to Dr. Apolo one of the disks of the scan. I’ve scheduled a meeting with her for December 10.

This evening, I received a response from my Kaiser doctor. The scan results were unexpected. The radiologist did not fund any tumor in my lungs (“No developing pulmonary nodule”). However, the radiologist did not compare this scan to the October scan that showed the lung tumor, but instead compared it to my scan in July of this year that showed no pulmonary tumor, but suggested I’d had a complete response from my outbreak of mets in April. So I’m skeptical. I’ve asked my Virginia-based Kaiser oncologist to request a reinterpretation, comparing it to the October scan.

The Colorado radiologist did find two other suspicious tumors, however: First, a “solitary enlarged prevascular mediastinal lymph node image 58 measures 1.3 cm with SUV max of 5.1 compared with 1 cm with SUV max of 3.2 which is suspicious for a metastasis.” Something is going on there. Second, "12 mm transverse diameter hypoattenuation right lobe of the thyroid demonstrates low-level metabolic activity with SUV max of 2.4, unchanged.” My thyroid has been previously examined and found to be benign, so I’m not too worried about that.

I’ve emailed three of the clinical oncologists who are following my case (Dr. Ferrera with Kaiser in Northern Virginia, Dr. Apolo with NIH NCI in Bethesda, and Dr. Hahn with Johns Hopkins in Baltimore), and asked for their thoughts. The suggestion that my lung tumor has simply disappeared seems too remarkable to believe, so I’m asking for verification. I’d assumed that I’d be entering a clinical trial in January, but if the scan reading is accurate, then perhaps I can postpone that and instead look forward to dancing with my daughter at her wedding.