Two kinds of scanxiety

In the melanoma community, and perhaps among groups with other cancers, there’s a condition known as “scanxiety” – the anxiety that patients and their loved ones experience waiting for results of CT/PET scans and MRIs performed to look for and measure active lesions. For some of us (like me!) the anxiety begins even before the scan is performed. Hence, I am writing about this 10 days before Robert is scheduled to be scanned at Johns Hopkins, the final appointment of his participation in a clinical trial of the melanoma GVAX vaccine.

There’s been some discussion of a different form of scanxiety on the Melanoma Research Foundation’s Melanoma Patients Information Page in the last couple of days. The wife of a cancer survivor whose recent scans showed he has no evidence of disease (NED) four years after his cancer was discovered related that they were told he would be scanned again in a year but that would be the last time. She wrote: “I understand with my head and I have a year to become comfortable with this ... I know 5 years is a big deal, but I also recognize the capriciousness of melanoma.” Her husband’s case, others I’ve read about, and Robert’s were discovered when we didn’t know to look for it and where there were no outward symptoms.  Now that we know so much more than we ever wanted to about melanoma, we look forward to the scans to reassure us that it’s not wreaking havoc in the patients’ bodies somewhere. The kind of scanxiety I described at the beginning of this post comes with the territory – but we know there will be an answer soon. We’re nervous, we’re anxious, but it gives us a break from the constant, nagging wondering about what’s going on in there. We get to reaffirm the patient’s NED status.

Perhaps I would be able to handle the second kind of scanxiety more easily if Robert had had a smaller, thinner lesion.  As things are, though (as I responded to the post on the MRF board), I can’t imagine being told “no more scans.” Watchful waiting, the “treatment” regimen that consists of no treatment, is hard enough even with scans. It’s just not very comforting to know that 80% of recurrences are found by the patients themselves or by their physicians. I’m not sure that data set is broken out by depth of the initial lesion – if it is, I haven’t come across an analysis reporting it that way. Were the 20% all patients with big, deep lesions to begin with?

This discussion points out the uncertainty many NED melanoma patients and their families live with. There’s controversy about the scans, to be sure. The patient is exposed to a lot of radiation with any of them, and the contrast dyes sometimes used also aren’t all that good for you. Further, melanoma specialists addressing a recent MRF webinar expressed reservations about PET/CT scans because they produce too many false-positives, sometimes causing patients to undergo unnecessary procedures and even more anxiety. But getting to reaffirm periodically that s/he’s NED is a big part of many melanoma patients’ and their loved-ones’ mental well-being.

I’ll figure it out eventually. Now, back to learning to live with knowing there’s nothing more we can do. The only thing I know, so far, is that it’s better than having something more to fight. I’ll let you know if I come up with anything more substantial to write about.