As a brain tumor survivor, I know I have a high chance of reoccurrence. When I completed active treatment, I asked Dr. Lossos, my hematologist/oncologist, how long I would have to see him going forward. He said, “we are going to have a long relationship’. Well, that statement has proven to be true. Three years have passed since I was diagnosed with a central nervous lymphoma and was successfully treated with chemotherapy. As there is a high chance of reoccurrence, I have been getting MRI’s frequently in hopes of ‘catching’ something early. I have been told that this will continue for at least 5 years as that is when a reoccurrence will happen if it is going to happen.
On September 19th I went for my 1st 6 month MRI and then a week later went to the clinic for my follow-up appointment. As a patient, with a chronic disease who sees the same physician over a period of time, you get to know their patterns and the routine of the clinic. I had gotten used to Dr. Lossos routine at our clinic visits but I noticed a few things were different.
This time, he closed the door and stood there and looked at me. He said, "how are you - any problems"? He did not take his eyes off of me and waited for me to answer. He looked at my husband and asked him: “how is she”? Have you noticed anything different? We both said, no, nothing unusual, and we both looked at each other ‘a little worried’. Corky asked how the MRI was. Dr. Lossos said we are going to talk about the MRI. He went on to exam me as he usually did. Once done he sat down and looked at us and said there was a change in the MRI. He said he did not think it was anything because if there was a reoccurrence, it usually does not present the way the radiology reported. But he was concerned.
As an FYI, I had looked at the MRI report before the appointment, so I knew what he was worried about. I had been worried also, but I thought that maybe the radiologist over-read the scan since I felt ok. But now being in front of the doctor and hearing him say he was worried, raised my level of fear.
The radiologist who read the report had suggested a correlation with dedicated contrast-enhanced posterior fossa cross-sectional study and CSF analysis. Dr. Lossos said he did not think those studies were needed at this point, as I was not having any symptoms.
The MRI usually takes about an hour. I am used to the process since I have had about 10 or so MRIs done over the past three years. Once in the scanner, the technician asked me what music I wanted to listen to. I chose Christmas music! I was conscious of trying to lay perfectly still so the technician could get a good picture and prayed that we would not find that my tumor had come back.
I had one more week to wait as I had our appointment with Dr. Lossos the following week on December 26th.