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"Reading" My CT Scans

“Reading” My CT Scans

by Beverly Shirts

When I was first diagnosed with cancer, the doctors and radiologists disagreed about what they thought I had. I was new to the world of cancer and scans and didn’t quite understand how doctors could be looking at the same films and coming up with different answers. Frustrated, I knew I wanted to look at the scans for myself.

I was quite ill, waiting for surgery, but I had purchased a Web-TV (allowing web surfing using your TV) the day before being diagnosed, so I plugged it in. I then went to my bookshelf for encyclopedias, turned them to the human anatomy pages, and settled as comfortably as possible on the couch. First I must learn to surf the web, and find as many photos of CT scans as possible.

It took a long time to identify organs. I learned to search for my “markers” those rather easily identified in the films. The pelvis, the spine, the kidneys, the lungs, the liver were the easiest for me. I realized immediately that the CT scan was like slicing the body in thin horizontal strips from the top down. I was beginning to really understand how the process worked. It was time for step two!

I wanted to look at my scans for myself. I went to the hospital at 8 AM, and asked to see my scans for myself. From the reaction of the receptionist you would have thought I asked to have tea with the Queen. For “We don’t allow that,” and “That’s not possible,” or “You have to ask your own doctor for that.” (My own doctor told me she couldn’t read CT scans, she only read the reports, and so this wasn’t possible.)

By the way, if your oncologist can understand CT scans, simply ask them to put the scans up during your regular visit, and have them explain.

I stayed firm, exceedingly polite, and insisted she check further. Eventually she did, and reported that patients were not allowed to look at scans without a radiologist present.

I simply smiled and said I would wait until he had a moment. She replied that they were very busy and it could take all day. I smiled, said, “I completely understand, I will wait.” I pulled out my book, sat down, making sure I was in her line of vision, and began to read.

There was quite a bit of buzzing around behind that desk, people whispering, and white coated lab techs looking over at me, and within the hour I saw the MD being filled in. I smiled, and continued to read. The MD walked over to me and warned me that only my own MD could answer questions, I said, "OK."

He put the images up and I looked for the circled or marked area, (learned that in my on-line browsing!) tried to not be nervous, and looked for my “markers” and stayed silent. Eventually he started talking, and I acted as intelligent as possible, using my limited knowledge. He was impressed, and started telling me more. I sensed that he was quite relieved that I detached, and was not emotional.

I would NEVER assume I could read my scan accurately, but I can understand what the doctors are showing me. It isn’t easy and it takes practice as you have to be able to THINK in 3-D, so, some people can't really learn it.

Now of course, you can usually get a CD copy of your scans. Have a dictionary and anatomy drawings or pictures nearby, and just take it a bit at a time. Try: or look at GIST scans on line, there are several on the GIST Support International website as well.

If you have your disks, put them in your CD on the files on the CD to open them. There are various tools so you can enlarge the picture, etc. Learning as much as you can helps communication with your physicians. Besides, looking at photos of the insides of your remarkable body is simply fascinating.