68GA PET Scan at Vanderbilt
On Monday, I had my appointment with Dr. Eric Liu, followed by my scheduled 68GA PET scan. This was my first scan other than a CT. I was nervous about being injected with a radioactive tracer -- it just sounds a bit scary.
Dr. Liu was very articulate and professional and spent a lot of time with me. I was very impressed with my experience at Vanderbilt-Ingram Cancer Center. Dr. Liu talked about my experience to date to gather some history. He said the 68GA PET scan would answer two questions:
1) Do I have appropriate receptors for the scan to work?
2) What is the extent and location of my disease?
The doctor said I was the last of the 50 patients that were in this clinical trial. He also mentioned, as has been debated in the on-line support groups, that he would appreciate it if I made a $2,000 contribution to Vanderbilt. The money would allow him to continue this important work to secure FDA approval for this scan in the US. This cost was explained to me up front before my appointment so there was no surprise here.
Dr. Liu said the injection should not hurt or cause any side effects but an EKG was required before and after the scan. He assured me the radioactive tracer has a very short half life and that I would be fine going through airport security the next day. We also discussed my doctor experiences in NYC, some of which had been “suboptimal”, and how it might work if I were to use him to treat my disease since I live so far away.
The prep for the scan included the EKG and the 68GA injection. Then I drank the same large container of barium contrast that I have had for all my CT scans. This process took about an hour. The injection did not sting, burn or cause any adverse consequences. The PET scanner is similar to a long CT scan machine. The drill is that you have to lie on your back with your arms above your head and not move for about 30 minutes. The machine does not tell you to breathe in and out like the CT scanner does. Some people have issues being put into the enclosed tunnel-like machine but I just kept my eyes closed and tried not to move. Dr. Liu came into the room while the scan was going on – this surprised me as I had my eyes closed. He encouraged me to stay still and that I was doing a great job. It was a nice pep talk.
After the scan was over I went for the second EKG and then to lunch.
Later in the afternoon, we met again with Dr. Liu. He said he did not have the report yet but that I was positive for the receptors and although I have extensive disease, there is no evidence of metastatic disease outside of the abdomen/pelvis. With the help of a radiologist, Dr. Walker, we reviewed the scans. The CT scan was right beside the 68GA scan on the computer screen. It was quite amazing, though I had no idea what we were looking at. The doctors said I had very low liver involvement with one definite liver metastasis to the right lobe and a possible metastasis to the left lobe. There is multifocal small bowel disease. That is where the primary tumor is located.
Dr Liu said that he definitely thinks that this is resectible because all of the tumors are in the abdomen. Surgery, although it is not curative, would mean that I would most likely die of something else other than carcinoid cancer. He described the surgery as major - probably 6 hours in the operating room with a 6-8 week recovery period. He would want to perform other tests such as an endoscopic ultrasound and surgery diagnostic labroscopy prior to any major surgery. The Doctor also wants to get some live tissue for pathology work. My original biopsy slides are exhausted/used up.
The doctor believes surgery is the best way to tackle my specific disease and believes sandostatin is just patchwork, of little long term help without a surgery. He also thinks that Peptide Receptor Radionuclide Therapy (PRRT) would not be necessary after a surgery because most of the disease would be gone and it would take a very long time to grow back. He said the best places for PRRT are Sweden (where he studied) and Bad Berka in Germany. He said the major side effects from PRRT are kidney damage and bone marrow suppression.
This was a lot of information to process and I am very scared to undergo a large surgery like he describes. Dr. Liu said that he really would like to do this surgery himself and I would need to stay in Nashville for 2-3 weeks if he were to do it. He said that he is very comfortable with Dr. Sasan Roayaie at Mount Sinai in New York as well. Dr. Roayaie is a liver transplant surgeon but also does this type surgery.
I need to do some thinking and reviewing my choices about treatment. I will wait for all the written reports and meet with my doctors here in New York to get further information. I thought Dr. Liu was the most helpful and articulate doctor I have seen so far to discuss this disease and I would highly recommend him.