The waiting game at Holy Cross

You sometimes wonder why things are done quickly one time, and take forever the next time.  Or, in the case of my scans at Holy Cross, forever each subsequent time.

I originally wrote this post 48+ hours after the scans, and still had no results. But, they FINALLY came in: stable tumor regression. The overall percent of regression was slightly less than I had previously experienced, but the two largest tumors shrank by about the same amount as prior scans. So it was good news. It just would have been nice to get this good news in a timely manner.

We understand a little more why it takes so long; there are only certain radiologists that can read scans using RECIST rules, which are standards that clinical trials must use to measure tumors and their progression. So it’s not like it is just sitting under the Starbucks cup of some resident radiology doctor-in-training. These guys have a more labor-intensive challenge when they see “Sharpe” come across their desk.

Still… the oncology team at Holy Cross seems to have no idea who is reading the scans, or when, or even if the right personnel are in the hospital. It sounds like lack of communication is a hospital-wide issue (and to be fair, there were communication barriers at Moffitt, too). When your life is measured in six-week chunks, though, a little more accountability should be the norm. It doesn’t take advanced medical training to teach co-workers to proactively work together and set expectations.

So all day Tuesday went by without results… and all day Wednesday went by without results, too.  And all day Thursday.  And all day Friday. Still nothing.  Jen would like to see if we can get the results through the medical records department, but they don’t have them yet – and that’s not where the problem lies anyways. Getting our team and radiology to communicate and set expectations is the underlying issue, and that relationship isn’t working well.

Eventually, you tire of waiting for red tape bureaucracy. Even (somewhat) worry- free patients have their limits. This will be escalated to the Holy Cross administration; not to get anyone in hot water, but to ensure that patients don’t spend days eagerly anticipating results, with no expectation set or communication given. When time is a valuable commodity for those who don’t know how much they have left, anxiously spending it waiting for news is unfair to that patient.  It’s also pretty annoying to those of us who are healing a little bit at a time, too.

T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »