Change of plans - second opinion

After reflecting on the news from my last doctor appointment, I realized that what the doctor told me was not adding up. He had told me that what I thought were the new tumours were now not tumours at all. I asked why I was put on Temodar chemotherapy back in June if they were not tumours. Interestingly he said that I was not put on chemo because of the MRI enhancements he now calls white matter disease,  rather the diffuse part that he reported is now growing. I was overcome by the whole conversation and dropped the issue.

In the days following that appointment I was emailing the nurse about the details of the new chemo and I asked "Am I going crazy or was I not put on chemo back in June because of the new tumours?" Click Send. One, two three, four five seconds later my phone rings. Its my doctor, asking if I have any questions. I repeated my concern to him, and he restated his position.

I knew I was right and my whole family, that was there in the room last June, agreed with me. I email the nurse asking for a copy of the doctors notes from that appointment. Click Send. One, two three, four five seconds later my phone rings. Its the nurse asking If I wanted to talk to the doctor. I said no, I want to see his notes. She hemmed and hawed about how the notes are not 'test results', and usually only test results are released to patients...but she'll see what she can do. Days went by, nothing.

In the following days I was dealing with my new insurance company about the chemo. No notes from the doctor. I was already having huge anxiety issues with having to take this new, stronger, chemo regime. This spat with the doctor exasperated the issue. I was feeling a huge loss of trust. Could it have been a mistake that I was put on chemo last June? Did the doctor confuse me with something else? Is he confusing me with someone else now? OMG, my head  exploded.

I decided to seek another opinion. There are a couple other brain tumour centres in my area, none as close. While searching for another doctor I found that a facility 20 minutes away is now affiliated with North-western university hospital. They have a neuro oncologist that sees patients there. Score!

Now note the hospital I was going too was quite an adventure. I had to take the day off of work. Drive at least an hour downtown, drive around for 20 minutes looking for a parking spot, then walk 4 blocks to the doctors office. Once I get there, take a ticket to checkin, take a seat and listen for your number to be called. Checkin, take a seat and wait to be called for vitals. Take a seat and wait to be called to see the doctor. Walk back to the car, drive home.

This week I went to see the new doctor. Drive 20 minutes, park 100 ft. from the door. Up one flight of stairs, walk 50 feet, you are there. Immediately greeted by a person, How can I help you? WOW. With all the anxiety caused my condition, pressures at work, pressures at home, what a relief.

For those of you still with me, here is the beef on the second opinion. The new doctor was able to get  the notes from the old doctor and confirmed my side of the story. He added that he would have done the same seeing the new MRI enhancements. He added that today those enhancements are not as prominent. As far as the 'new growth', he does not think that the changes are convincing evidence to re-start chemo, Temodar or PCV. He suggested continued monitoring with MRI's every two months. Sounds good to me.

I feel that I will get much more attention from this doctor. My wife and I decided to have him follow my condition. Next MRI is in March. No chemo for now. I am more confident in the doctor. Icing on the cake is the new, convenient, and personal facility. I feel relieved.