Mets Day 1076: How not to do a CT scan

Today was my first CT scan since I started the nivolumab clinical trial. The scan is intended to provide a status report on the sizes of my various tumors. It will be a couple of days before I get the results. The trial protocol requires two scans before the doctors can make any determination of whether the Opdivo drug is working, so today's scan will not be definitive.

Anyway, so I arrived at the Hopkins scan at about 10:30 am, only to have the nurse tell me that Hopkins has not received approval from my health insurance company to do the scan. I explained that this scan was part of a clinical trial, which was news to the nurse. She disappeared to make some calls, then came back and told me that, even though I was in a clinical trial, Hopkins considered this scan to be within the normal standard of care, so it was appropriate to ask the insurance company to cover it. She said that someone was calling the insurance company now to get the approval. She said that someone should have flagged this before, and apologized for the wait.

After an hour of waiting, the nurse came back and told me that United health care had approved the scan. At about the same time, the research nurse for the clinical trial showed up and also apologized for not obtaining the approval in advance. She assured me that future scans would get the approval in advance. I asked about the relationship between the clinical trial sponsor, who was supposed to cover the costs associated with the trial, and the decision to seek reimbursement from UHC for the scans. The answer is that any care that is consistent with the standard of care is billable to the insurance company, regardless of whether it occurs within a clinical trial.

With the approval in hand, I was escorted back to have my port accessed, then led into the CT scan room. I was to have scans of my neck, chest, and abdomen without, then with, contrast. After the scans without contrast, a nurse hooked me up to an infusion pump that would feed the glucose-rich media with iodine through my port and into my bloodstream, where it would be distributed throughout my body in about five heartbeats. I was used to this procedure, having gone through it more than 20 times in the past three years.

Instead of getting that familiar warmth as spread through the body and gather in the loins upon the pump activation, however, the connection between the pump and my port broke apart, spraying my face, arms, torso, and the inside of the CT doughnut with sticky goo. I yelled out to stop the scan, and three nurses and techs came running out bearing shocked expressions. They were more rattled than I was. The nurse who had hooked me repeatedly apologized, saying that had never happened to him before. (Me either.) They hooked another bag of contrast up, double-checking the connection line to my port, then ran me through the scan.

As the table was moved out of the doughnut, the nurses returned to clean me up. The media on my arm had started to harden, like sugar glaze exposed to air. The nurses were unable to find a towel, so they grabbed one of the clean sheets for the table, wetted it, and wiped off my arms, face, and hair. Another one wiped out the machine, then the third escorted me out to have my port de-accessed, repeating her apologies. (Please don't tell the administration, she silently said. Don't worry, I silently thought back. I'll just post it on my blog.)

As soon as my port access was removed, one of the CT techs came running back to get me. It seems that they didn't do the contrast scan of the abdomen - they just did the neck and chest. Since I'd just had the contrast, they said I didn't need more. So they slapped me back on the table, ran me through the scanner, then sent me on my way. They were visibly rattled. I'm glad they didn't decide to crank up the scanner power and nuke me. Or maybe they did and I don't know it.

I'll get the results in a day or two. And next Monday, I'll have another infusion. We'll stay the course until at least early May, when I'll have the second scan after six rounds of infusions, and we'll decide whether this trial is doing me any good.

Speaking of clinical trials, yesterday the New York Times ran an article about he low percentage of adult cancer patients who entered clinical trials. While 80 to 90 percent of pediatric cancer patients participate in clinical trials, the article said, fewer than 5% of adults with cancer participate. I'm amazed at that figure. Upon some reflection, I think it's because adults want to think that their course of treatment will lead to a cure, not an experiment. And their doctors are obliging them, and not telling them about clinical trial options. I think that there needs to be greater humility by oncologists who treat adults, as well as their patients. There is so much we simply don't know about cancer.