A quick update and change in the post-cancer care plan: Look Mom, no CT scans!

I had an appointment with my oncologist a couple weeks ago, and my blood work looked great. Everything is positively normal. On July 18th, I will officially be in remissions for 2 years, which means the likelihood of recurrence drops dramatically, less than 10% or so. While I’m not entirely out of the woods, I’m in the shrubby under story for sure.

Perhaps more exciting is that my oncologist and I took a big step in adjusting my care for the next three years. In the US, standard remission protocol for diffuse large B cell NHL patients is to have 4 check ups per year (every 3 months) with CT scans twice per year, with a transition to a CT scan once per year and check ups every 6 months for the following three years. However, recent research on patients who have had recurrences shows that only 2% of relapses are detected through CT scans while the remaining 98% are initially detected via patients reporting recurring symptoms to their oncologists. Basically, the scans every 6 months are unlikely to catch this aggressive form before a patient feels it themselves.

I really, really don’t like the CT scans. I feel like I’ve done a million of them – an overstatement, but it’s been a lot more than I’d like. The procedure itself doesn’t bother me at all, even though I get injected with contrast that burns my chest a little bit and makes me feel like I have to pee. It’s relatively quick and painless as cancer procedures go.

It’s just that I get really anxious before and after to the point where I often end up developing psychosomatic symptoms. The only relief I get from “scanxiety” is hearing that the results were negative and that’s only relief for my OCD riddled brain.  I don’t have any anxiety any more about cancer coming back when I don’t have a CT scan coming up, but it’s the process of the appointment itself and the little teeny, tiny voice in the deep recesses of my mind saying, “What if you’re in that 2%? What if it’s back and this scan will show it?” that really bothers me.

I actually would be quite fine with eliminating the CT scans from my life all together. The routine blood work I get at every check up tells me just as much. They analyze my tumor markers each time and the numbers are produced quite quickly. Since I have online access to my records now, I can usually see the counts myself in a day or so. It’s quite reassuring and much less of a stressful process to go through.

According to my oncologist, several facilities have transitioned to post-care plans than don’t involve regular CT scans but more frequent routine check ups and blood work in light of this new research, but my cancer care center hasn’t made the switch yet. Every time I’ve had a check up recently, he and I have discussed this change and how he could see it easily becoming the standard procedure nation wide in the next few years but he wasn’t ready to make the change yet.

That is…until my last appointment. We discussed this situation again and I expressed to him that, unlike most patients who like getting scans for reassurance, I actually don’t find them any more reassuring than the blood work and if anything, the scans cause more anxiety for me. I told him I actually would be fine without getting them for the next three years.

To my surprise, he said, “Okay…let’s try it. If you’d like to make this change, I don’t see a reason why we can’t try it.” He basically set out a plan where I would get one final CT scan to mark the two year post-remission point but for the next three years, I will not get CT scans once per year with six month check ups. Instead, I will continue to see him every three months for regular blood work and check ups and not do CT scans at all.

I will be his first patient to make this transition in post-cancer care, and he did reserve the option to go back to the CT scans in the future, but for now, we will try this out.

He expressed that there are the reasons why this works for me, keeping in mind that it may not be best for everyone:

1. I made it through the first two years post-remission with no issues. The likelihood that diffuse large B cell NHL will return now is very low, 10% or even less.

2. I am completely and totally diligent about attending my check ups and getting blood work done regularly. I monitor my symptoms between appointments. I keep a notebook that I fill with questions before my appointments and when I was symptomatic, I kept a basic log of everything to share with him during appointments. (It’s like I’m a science nerd or something. Oh, wait…) Ultimately, he trusts that I would tell him if I was experiencing symptoms and we don’t need to rely on the scans.

3. I’m relatively young for an adult cancer patient, and since I’ve already been exposed to radiation treatments and hopefully have a lot more life to live, he would like to lessen the exposure to further radiation, if at all possible. This is especially true given that the mass I had was located between my lungs and on top of my heart. My whole chest, including breast tissue, has taken enough of a beating from radiation. No need to put it through anything more than necessary.

4. And, since I’m a young adult woman who had radiation to the chest, I’m at an increased risk of getting breast cancer, so I will need to start getting breast MRIs done every year starting at age 35, oh joy of joys! This is something he and I have discussed in the past. I basically begged him to give me a couple years off from scans on a regular basis. Just a few years of freedom from banging, clanging, talking machines and contrast dyes, please.

Overall, I’m super pleased with this development. I don’t mind going in for more frequent check ups one bit, and I know we can always go back to regular scans if I so choose (which I probably won’t).

So, tomorrow’s CT scan will hopefully be the last for a long, long time.

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