A lot has gone on the last couple of weeks! I left off with Dr. Grossman telling me the scans were clear. About a week later, Karen (the nurse from Dr. Grossman's office) called and left me a voice message. Karen's message said that she needed me to call her but that it was "no big deal!" I started laughing after hearing the message. Everything that comes from Huntsman is A BIG DEAL!
I called Karen who told me that Dr. Grossman was looking at the CT scan of my neck and it showed some questions about some lymph nodes in the my neck. Karen said Dr. Grossman said that if I was not on the study, he would just watch the lymph nodes but because of the study, I needed to get a PET CT scan to see if the lymph nodes were "reactive". Karen told me that the PET CT scan will be scheduled and I would be given the time. I told Karen that this week was bad because our dispatch center is going live to a new 911 phone system. I had training all week in preparation for the "cut over". I gave Karen some available times and hung up the phone. I then called Nicole. Nicole began immediately asking me a bunch of questions which of course I had not asked. I told Nicole to call Karen, which of course she did.
Nicole was able to schedule the PET CT scan for this past Wednesday (yes in the middle of my busiest week but she was not going to wait a couple of weeks to find out what was going on.) Nicole also spoke with Dr. Todd Cook regarding what we had learned. Nicole also called Dr. Noyes office to let them know what we had learned. I had just been to Dr. Noyes office and told him the scans were clear. Dr. Cook was able to look at the results of the CT scan. Nicole was able to also get a copy of the actual result. Dr. Cook said there were four enlarged lymph nodes in my neck and shoulder. Three were in my neck and one is under my clavicle. Dr. Cook said that he agreed with the PET CT scan but also felt that whether the lymph nodes were reactive or not they should be removed.
Wednesday I arrived at Huntsman at 6:00 am for the PET CT scan. I was taken to a room where they started an IV and drew some blood. The nurse then came back and gave me the "radioactive" injection through my IV. On my last PET CT scan, I also had to drink a liquid but not this time. The nurse then said I would simply sit back and relax and they would come back and get me in about an hour. The nurse then said "Have a nice nap!"
I did fall asleep and when I woke up, I felt that it had to be close to an hour. I looked at my phone to see the time and it had been about 1 hour 20 minutes. I was getting confused. A few minutes later the nurse stuck her head in the door and said they were having trouble with the "camera" and it would be a 15 minutes longer. About 30 minutes later, the nurse came back in to get me. The nurse removed the IV and then took me to the bathroom to empty my bladder. The funny thing about this is every time I get a PET CT scan, I am taken to a very specific toilet when I empty my bladder. I have decided it is because if you turned off the light, my urine just might light up the room!!
When I came out of the bathroom, I found the nurse who said we were going to follow a gentleman downstairs. After we got downstairs, I noticed the nurse was looking around. She then looked at me and said "I am so lost". I then realized that maybe something had happened because I was pretty sure we were not going to the same "camera" she is used to operating. This thought was confirmed when the nurse had difficulty operating the PET CT machine.
The PET CT scan took about an hour. Following the scan I went up to my wife. My wife told me that they had cancelled the rest of the PET CT scans for the day because the machine was broken!!
My wife spoke with the secretary and learned that the results would most likely be available in 24 to 48 hours. Nicole sent an email to Karen asking to let us know the results as soon as possible. Nicole was concerned because she did not know if they would simply call, or we would have to schedule an appointment to get the results. On Friday when we still had not heard the results, she let a message again with Karen asking that we learn of the results, if possible, on Friday before the weekend. At about 6 pm, Dr. Grossman called me. Dr. Grossman said that the PET CT scan showed that one of the lymph nodes was "excited" so he was scheduling a ultrasound biopsy. Dr. Grossman said he was not worried about the lymph node but because of the trial and diagnosis, we needed to be sure because the result could say that we had suffered a relapse or we would need to change course on the treatment. I had Dr. Grossman talk to Nicole as well because I figured if I did not, I would be riddled with questions that I would not have the answer for and there would be no way to call Dr. Grossman until Monday to get the answers.
Nicole did ask Dr. Grossman if it was better to get a biopsy rather than to remove the lypmh node. Dr. Grossman said that it is highly likely the node is enlarged because of the amount of surgery I had on my neck. Nicole said she was still going to speak with Dr Noyes and Dr Cook on Monday to see what they thought as well.
Though we were both discouraged, I told Nicole that this was the reason we chose this treatment option. The trial is what caused Dr Grossman to order the PET CT scan instead of waiting for 3 months until we got the next set of scans. I would much rather know now then to find out 3 months from now that there was a problem!!!
I called Karen who told me that Dr. Grossman was looking at the CT scan of my neck and it showed some questions about some lymph nodes in the my neck. Karen said Dr. Grossman said that if I was not on the study, he would just watch the lymph nodes but because of the study, I needed to get a PET CT scan to see if the lymph nodes were "reactive". Karen told me that the PET CT scan will be scheduled and I would be given the time. I told Karen that this week was bad because our dispatch center is going live to a new 911 phone system. I had training all week in preparation for the "cut over". I gave Karen some available times and hung up the phone. I then called Nicole. Nicole began immediately asking me a bunch of questions which of course I had not asked. I told Nicole to call Karen, which of course she did.
Nicole was able to schedule the PET CT scan for this past Wednesday (yes in the middle of my busiest week but she was not going to wait a couple of weeks to find out what was going on.) Nicole also spoke with Dr. Todd Cook regarding what we had learned. Nicole also called Dr. Noyes office to let them know what we had learned. I had just been to Dr. Noyes office and told him the scans were clear. Dr. Cook was able to look at the results of the CT scan. Nicole was able to also get a copy of the actual result. Dr. Cook said there were four enlarged lymph nodes in my neck and shoulder. Three were in my neck and one is under my clavicle. Dr. Cook said that he agreed with the PET CT scan but also felt that whether the lymph nodes were reactive or not they should be removed.
Wednesday I arrived at Huntsman at 6:00 am for the PET CT scan. I was taken to a room where they started an IV and drew some blood. The nurse then came back and gave me the "radioactive" injection through my IV. On my last PET CT scan, I also had to drink a liquid but not this time. The nurse then said I would simply sit back and relax and they would come back and get me in about an hour. The nurse then said "Have a nice nap!"
I did fall asleep and when I woke up, I felt that it had to be close to an hour. I looked at my phone to see the time and it had been about 1 hour 20 minutes. I was getting confused. A few minutes later the nurse stuck her head in the door and said they were having trouble with the "camera" and it would be a 15 minutes longer. About 30 minutes later, the nurse came back in to get me. The nurse removed the IV and then took me to the bathroom to empty my bladder. The funny thing about this is every time I get a PET CT scan, I am taken to a very specific toilet when I empty my bladder. I have decided it is because if you turned off the light, my urine just might light up the room!!
When I came out of the bathroom, I found the nurse who said we were going to follow a gentleman downstairs. After we got downstairs, I noticed the nurse was looking around. She then looked at me and said "I am so lost". I then realized that maybe something had happened because I was pretty sure we were not going to the same "camera" she is used to operating. This thought was confirmed when the nurse had difficulty operating the PET CT machine.
The PET CT scan took about an hour. Following the scan I went up to my wife. My wife told me that they had cancelled the rest of the PET CT scans for the day because the machine was broken!!
My wife spoke with the secretary and learned that the results would most likely be available in 24 to 48 hours. Nicole sent an email to Karen asking to let us know the results as soon as possible. Nicole was concerned because she did not know if they would simply call, or we would have to schedule an appointment to get the results. On Friday when we still had not heard the results, she let a message again with Karen asking that we learn of the results, if possible, on Friday before the weekend. At about 6 pm, Dr. Grossman called me. Dr. Grossman said that the PET CT scan showed that one of the lymph nodes was "excited" so he was scheduling a ultrasound biopsy. Dr. Grossman said he was not worried about the lymph node but because of the trial and diagnosis, we needed to be sure because the result could say that we had suffered a relapse or we would need to change course on the treatment. I had Dr. Grossman talk to Nicole as well because I figured if I did not, I would be riddled with questions that I would not have the answer for and there would be no way to call Dr. Grossman until Monday to get the answers.
Nicole did ask Dr. Grossman if it was better to get a biopsy rather than to remove the lypmh node. Dr. Grossman said that it is highly likely the node is enlarged because of the amount of surgery I had on my neck. Nicole said she was still going to speak with Dr Noyes and Dr Cook on Monday to see what they thought as well.
Though we were both discouraged, I told Nicole that this was the reason we chose this treatment option. The trial is what caused Dr Grossman to order the PET CT scan instead of waiting for 3 months until we got the next set of scans. I would much rather know now then to find out 3 months from now that there was a problem!!!
Comments
Post a Comment