Saturday, June 6, 2015


Scanxiety:  the fear before having an x-ray, MRI, or ct scan scheduled, lasting until you know the results.

     It's this constant up and down. The tests themselves aren't bad ,once you know what to expect physically. I'm easily into double digits on the number of scans I've been through. Calm deep breaths and it's over.  It's the results that are the hard part. You worry about what it will show, if the cancer has grown or spread. Then if everything is okay, you're relieved, but there will always be another scan a few months or a year down the road.  The actual number of days varies greatly.

      After finishing treatment for my primary tumor, I had myself convinced that the first follow up scan would show that it was back. I'm not sure if there was a time in between that I didn't worry, or if it only decreased a bit, and increased in the weeks leading up to it. Then the scan itself, and a few more days wait until my husband and I were sitting in the oncologist office holding hands, not talking, waiting for that report. That first time it was good, then 3 months later, clear again. After a couple years, the scans spread out to 6 months apart, then to once a year. I stopped asking my husband to go with me, and the scanxiety shrank to the day of the appointment.I needed to know I was okay. After 9 years, the scans were just about as scary as getting my teeth cleaned.

     Adenoid Cystic Carcinoma doesn't follow the rules that other cancers do. With most cancer, if you have 5 years of clean scans then you are considered cured. You stop seeing the oncologist, stop having scans, and start your life again. With ACC, we were always told that it grows slowly, and that it is known to come back later after 5 years, 10 years or longer. They didn't know how long they would need to follow me. Along with the anxiety of the scans, there is also a comfort in knowing everything is okay, so overall I didn't mind the scans. I needed to know I was okay to be able to live my life.

     That changed with the 9 year scan, the nurse called my house instead of waiting for the appointment. There was a spot in my lung that had grown. It was there the previous year, but assumed to be a scar. Now it had doubled in size needed additional scans. The biopsy would show that the ACC had metastasized to my left lung. We were able to treat it with cyberknife (a highly focused radiation).  The fact that it spread to a new location tells us that there other microscopic cancer cells. There isn't a chemotherapy it responds to so we can't  go after those.We just don't know how fast they might grow. I've had a couple good scans, and due again. It's much harder now. The chance of seeing something is too high.

     I had the ct scan last week. There is this mental game when the tech comes back in afterwards. Legally they can't say anything, so you are wondering if you can tell by their behavior. Do they seem relaxed, or are they being extra nice because they saw  something? This time the tech recognized me from previous scans, so I didn't go over my medical history, even though it's in the file. I did mention that it was a checkup from the cyberknife last summer. When  she came back in room after the scan," so lung cancer?"  That could really freak someone out. Realistically though, my scans do look a little weird. My right lung is missing, I usually tell them that, and there's a scar from the radiation. I remind myself that unless she was comparing my current scan to a previous scan, she wouldn't know what she was looking at. I also remind myself that ACC has grown very slowly in the past, so even if there is something new, it's doubtful that if would be something large enough to need treatment. So we wait.

    My appointment with the pulmonologist to get results was about a week later. As days go by and they don't call, I relax a little. If they needed a biopsy or further scans they would call.  Their office was on my caller ID Monday, and I got scared. I picked it up and didn't recognize the voice. I've been followed by the same doctor for so long, I know his nurse's voice. She was the one who called me last year with bad news. This was just the scheduler calling to confirm the appointment.

     The closer the appointment gets, the worse the scanxiety. It's hard to make any plans beyond that day, that moment. How can you commit to going out to dinner with friends if you life could be falling apart?  I  find myself thinking about how quickly our plans changed last time  Instead of a summer vacation, I was doing treatments and recovering.  It can be hard to think about anything else.

     This time, before my doctor even sat down, he told me the scans looked good. No new spots, and no new growth around the scar. I felt the muscles in my shoulders relax. I hadn't even realized how tense they were. We talked a little, and the next scan is in 4 months. There is always another scan. We're relieved to have more time. But the relief is never complete. The thought is still hanging that the next scan may not be good. I've heard other people refer to ACC as their stalker. You know its out there, at times you feel as if it's watching. You just don't know when it's going to step out into the open. It's harder now that we know that it has spread. It used to feel like we were moving away from something. The longer I had clean scans, the easier it was to think it wasn't going to come back.

      Now it feels like we are moving towards something. Someday we'll see it again. This scan was good but the next one may not be. It drives me a bit crazy to be told that they don't know how long it might be. With other cancers, they may see thousands of patients, and get a decent idea of how it will progress. ACC is rare, so there haven't been a lot of studies, and most doctors will have only treated a few patients, if any. It also can grow quickly at times, or be almost dormant. I've been fortunate that in me, the cancer has grown more slowly than most. For a lot of people, when it metastasizes there are lots of tiny spots growing slowly. For me, there was just one.  For now I'm okay, and we are praying that it will be years before we have to deal with this again. I keep thinking 10 years, I need 10 years to get my kids out of high school. There are people who have lived 20 years or more after their primary diagnosis. There are also people who have had more aggressive ACC and lived only a few years.

    So much of what we know about ACC doesn't come from our doctors. It comes from people sharing their stories in online groups, or at get together. There is a strength in that. It helps to know there are other people living with this. There isn't a standard treatment. There isn't a clear what happens next. The adenoid cystic research foundation is the best  source of information. When talking about ACC that has spread and is growing they referred to it as " a journey with few signposts and even more potential paths to follow" .  If it's stable, there maybe no treatment at all, it maybe best to watch and wait.

     We're learning to live with the uncertainty. I try an focus on today. Today the scans don't show cancer. Today I feel good. Today my kids need their mom, and my husband needs his wife. Sometimes it's as simple as letting my son stay up past his bedtime to finish watching a movie with me on a Friday night. It can also mean scheduling a weekend away to not talk about kids or medical stuff, and to just  remember what it is like to be us. It will never be the same as it was before ACC, but it can be good, and blessed,  and joyful. I love the praise song"10,000 reasons" so I painted a canvas with chalkboard paint and hung it in my bathroom to remind me to look for the good. I laugh when I saw my daughters post it...she wants to add a few idea of her own.