Changing Surveillance Routines Brings New Survivorship Challenges

I’ve been under cancer screening surveillance for over five years now. What started as scans scheduled every three months after my initial cancer diagnosis eventually turned into appointments every six months. I’ve been very grateful for that extension of time; the three-month intervals did not allow me to ‘live’ very much in between, as the anxiety around the next scan crept up very quickly. During that initial 3-month period, I spent several days, even weeks, with scanxiety, fearing bad news that I was not up for hearing.

The time between my six-month appointments has allowed me to breathe. Scanxiety now shows up just a few days before. And I’ve gotten the drill down for what is an all-day series of appointments; it starts with the two-hour drive to the cancer center, followed by the scramble for parking, then the pricking of my veins for bloodwork, the drinking of the contrast, the solo trip into the CT machine, the waiting (usually within hours) for the results, and then seeing my oncologist to discuss it all. This all happens on the same day - which I am extremely grateful for.

I’m a person who likes routines. I take comfort in knowing what’s coming. Having this attribute means that I don’t respond well when things shift and my routine gets changed. Which is exactly what happened at my most recent six-month appointment.

After going through all the steps like usual, I waited the three hours in between my scan and seeing my oncologist. My test results, which usually come back in an hour or two, were not showing up in my portal. I didn’t think it was personal, nor did I think there was an issue with my scans. I figured that it was likely a radiologist bandwidth issue, and that the results would show up whenever they showed up.

I was grateful that my oncologist reviewed the scans before she met with me, and all seemed well. But another change in my routine that day had her bringing up with me, for the first time since I’ve been seeing her, extending my time between scans even further. She said there comes a point where we (meaning doctor and patient) are comfortable enough with the distance of time from initial diagnosis to no recurrence that we should make this next transition. And as I listened to her words, it was clear that this was something that I, as the patient, would need to come to terms with.

I understood what she was saying and didn’t disagree with it. The six-month scans have brought me anxiety, but also given me incredible peace. Nothing from my past cancer diagnoses has indicated that if something showed up in the six-month period, I’d be in a place of irreparable metastases - so six months has always seemed like a ‘safe’ period of time for me. Now extending to a year? Talk about a break in routine. Logically, it makes sense, but emotionally, it makes me nervous. But after we talked about it, we agreed to the change and now my next surveillance CT scan is scheduled for a year from the last.

Just as I was about to leave her office, the results of one of my scans came in. Something suspicious on my appendix lit up that has been slowly growing since 2022. OK, now my surveillance routine was officially broken.

My oncologist assured me that if this was a neuroendocrine tumor, it was very different from the fast-growing, highly aggressive neuroendocrine cancer I was initially diagnosed with. The plan was for her to discuss further with radiologists and offer up a next-step plan. As I got up to leave the office, I wasn’t freaking out, but not feeling that ‘peace’ post-appointment for the first time, got me rattled. I will say that I have had various scares of ‘suspicious’ results from other annual tests over the past few years, and I have learned to manage them pretty well. You don’t know what you don’t know until you know it; you know your body better than anyone, and perhaps most importantly, a diagnosis of cancer does not automatically mean a death sentence. This is a very different way of thinking than I was able to wrangle during my first diagnosis.

She called me the next day, and we determined next steps would include a PET scan and consult with a surgical oncologist. During the next two weeks, the PET scan was conducted, I visited three different locations for bloodwork and an EKG, I had my annual mammogram (scheduled a year in advance), and finally, I had surgery to remove my appendix (which is never biopsied, always just removed). All of this took place within a two-week period.

I just got my PET scan and surgical results a few days ago, and as it turns out, I am still NED. There were no signs of cancer on my appendix after all. I went into the surgery understanding that this could be a likely scenario. I also went in thinking that removing this superfluous organ means there’s one less organ to eventually get this dreaded disease. I had a great team and now have great results.

And good results are a routine I’m always up for.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.