Jan 17, 2012 - 9:57 pm
My husband was first diagnosed with a brain tumor 10 years ago at the age of 27. He had surgery to remove the tumor (mixed glioma) but we were told there was 100% recurrence. As a result, we were extra vigilant about getting his MRIs on time from a provider with a good reputation in another state. Up until last year, I actually thought we were going to be the miracle.
He had an MRI in December 2010 and everything was fine. In January, he began having paranoid thoughts and was anxious. This wasn't normal at all so I insisted on another MRI. I filled out all of the releases and asked that the care be coordinated and the results shared with his out of state provider and vice versa. The results came back and we were told, it was nothing.
We went along for another 6 months until his next scheduled MRI believing it was "nothing". We found out in June that the "nothing" from January was actually the recurrence of his tumor. The scan was misread. If we had caught the tumor in January, he could have had surgery to remove the tumor. At this point, it's no longer operable and he is undergoing chemo and radiation. I feel like the provider who misread his scan has killed my husband. I'm so angry that I can't even "talk" about this without crying. With surgery, we might have had another 10 years tumor free. Without surgery, the average lifespan is 5 years. We've gone from talking about recurrence to talking about lifespan.
My husband says that everything has happened the way it was meant to happen. He is currently receiving treatment from an outstanding provider (not one of the two previously mentioned). My husband has a really positive attitude and I don't want to derail that by dwelling on this with him so I don't mention my feelings about this topic. We're both in our 30s and because of some idiot who couldn't read an MRI, I'm trying to balance being positive and getting him the best care I possibly can with making sure his bucket list is completed, just in case. I'm so angry, and I don't know how to get over it.