Its been a rough week mentally for me. On Wednesday I went to my local hospital and tried to get a copy of an old CT scan from 9 years ago. Both doctors here in Buffalo had asked me if I had ever had a previous MRI at any point in my life. They both suggested that I may have had this tumor for decades and since I am “asymptomatic” (in their opinions) that this might not be a big deal. The woman at medical records kindly explained that they only keep scans for 6 years and mine was already destroyed. However there was a report in my medical record and I could have that. When I looked at it, it was no help. She saw the look on my face when I was looking it over and asked me what I was looking for specifically so I explained. “I was diagnosed with a very rare type of brain tumor and I’m trying to figure out if it has always been there or if it is more recent”. She told me that there was a room full boxes of old medical records waiting to be destroyed and she would look to see if my full record was there. Bless her, it was.
The full report showed that I had no lesions/masses/calcifications, nothing… That means that this tumor has not always been there and it is something that has developed in at least the last nine years, but maybe 6 or 3, there is really no way to know when it started.
It wasn’t until the next day that I started to put the pieces together and that’s when I got worried. The doctor from Roswell told me that when they put my MRI up on the screen there was unanimous agreement that it was a subependymoma. He told me it was slow growing. I asked how slow growing, that is a very subjective term. He said 1mm every 1-2 years. Ok I thought, that doesn’t sound too bad, but, this thing is already pressing on my aqueduct so how many more mm would it need to grow before I develop hydrocephalus? Well that was before I had the old CT scan results. My tumor is 17mm x 9mm. If that tumor is less 9 years old then it is absolutely not growing at average of 1mm per 1-2 years. That means it is more aggressive.
My husband says that I can’t jump to conclusions because I have incomplete information. I wish I could say that I have been successful and that I haven’t been worked up, but that would be a lie.
One of the doctors I am going to see at NY Presbyterian thought it was a low grade glioma. Until this week I had completely put that out of my mind, mostly because it was the scariest of all the potential differential diagnoses that were on the table at this point. But now I felt the need to revisit that idea. I don’t like it, it’s giving me crazy anxiety.
So until Wednesday when I can go to Cleveland Clinic and ask a thousand questions I’ll be hanging out with my cat giving myself pet therapy.