Since my Cancer diagnosis in October of 2018, I’ve had follow-up CT scans every three to six months. I don’t usually worry too much about these, they have always come back clear with no changes worth noting. This last one was different though, and it’s been a really stressful experience. More so than it needed to have been.
You see, I had the test on July 21 but my appointment with the doctor wasn’t scheduled until August 17th. I wasn’t worried about the delay because I wasn’t worried about the results.
Just two days after the test, the results were sent to me in the online charting system offered by the hospital. I made the choice to read the results and was surprised to read that there were two new lesions on my liver and that metastasis could not be excluded.
This shocked me, but it also left me wondering what the results really meant. Should I be worried, should I go to the emergency room, I mean, this was all but telling me I had Cancer again.
I called the doctor’s office hoping to talk to him or the nurse practitioner to get some context for the results. I was told they don’t discuss them over the phone but that the doctor did want me to come in earlier than my Aug 17 appointment. I scheduled for Aug 3, a week away and then I waited, and worried.
On the 3rd, I was finally able to see my oncologist and we discussed the results. The lesions were concerning but not conclusive. Lesions don’t necessarily mean Cancer and they are normal and unremarkable if benign. He gave me an order for a follow up PET scan with a potential biopsy based on the results. I left feeling concerned but confident that all was being done and that I was armed with all the information I needed.
And then I started to get angry. Why would the hospital release such test results directly to the patient before they are processed by the doctor? What was the purpose of my being able to read these results without also having the opportunity to directly speak to my provider about them? Why did I have to have stress for a week when it wasn’t necessary.
For me stress manifests itself pretty deeply. I break. I shut down. I can’t concentrate on TV or reading. I try to play a game on my computer but am immediately overcome with anxiety and dread. Some people face stress by keeping themselves busy. I am unable to be busy so I sit and worry about things I know better than to worry about.
I know and understand that I made the choice to look at the results but I don’t think I am the only one who would do so. How many others are put in to the similar position because they don’t delay the displaying of the results until they can be interpreted by the doctor? Without the appropriate context such results are dangerous.
I got the order for the PET scan and called on Wednesday to schedule it. They said they could get me in on Monday which worked for me. On Thursday I got a call from them telling me that my insurance hadn’t yet authorized the test and that there was a chance they would need to postpone or cancel the test based on whether that auth was still pending by Friday at 2pm.
I thanked them for the call and then I got to thinking. Why would they tell me this? I couldn’t do anything to convince the insurance company to give me the authorization. I knew my doctor’s office had given them the appropriate justification and were working with them. What was the purpose of having me stress and worry about something that was outside of my control and would probably work itself out. Worst case scenario they call me to tell me that the test would need to be postponed. What was the purpose of letting me know it could?
Navigating Cancer is a full time job and comes with it a fair amount of stress and corresponding anxiety. I’ve been dealing with that for almost three years now, sometimes successfully, other times not so much. But I’ve managed to get this far. What I don’t need is stress that could have been avoided.
Now I just need to convince myself not to read the PET scan results when they hit my chart. I don’t see the oncologist again until the 17th…