Portland appointment with Pommier

On Monday June 3, Peter and I met with Dr. Pommier in Portland for the first time. The OHSU (Oregon Health and Sciences University) campus is really beautiful. We got to ride in the tram which goes from the lower to upper campus and has a beautiful view of the City of Portland and the mountains. (I'll post pictures) Dr. Pommier gave an educational over view of NET/Carcinoid tumors. We learned that he had produced an excellent youtube video, which we later watched, about NET/Carciniod syndrome. If you're interested you should be able to find it. He has also produced an informative DVD for patients to take home. We found it very helpful and patient oriented including a brief nutrition section.
After what we thought was a careful review of my medical history presented in scans, labs, CD's and reports, an interview with me and a physical examination; Pommier gave us his recommendation. He described the need to find the primary source of cancer and how looking with the eye during surgery provides a better chance at finding it than continued MRI, Octreotide, CT scans and tests. He is able to find the unknown primary 80% of the time and often within 6 seconds. He thinks it might be in the bowel or intestines. Colonoscopies often don't find primaries in the bowel because it goes inside to look while often NET's sit on the outside wall. He has found them wrapped up in the upper and lower intestines as well, in places impossible to see in scans. During the surgery he will debulk the liver (also called resection). He plans to remove the largest mass in the left lobe of the liver, the big one in the right lobe and any others he can get to. He will not be able to get 100% of the tumors out of the liver. With these slow growing tumors it can be years before the small ones, we are unable to remove, become large enough to be considered for removal. Since I have responded well to the treatment of Octreotide (SAA LAR 30) given every 28 days by injection to the rump muscle, it may be 3-5 years to tumor progression or even10 years until the tumors left behind grow. The tumors have not grown in the last 7 months since we discovered them due to Octreotide. We will continue with the Octreotide indefinitely. After surgery we will monitor for growth every 3 months through labs and 6 months through scans. While in surgery he will remove the gallbladder because long term use of Octreotide causes gallstones. A good prayer to say for me is that they will find the primary and remove it and that the liver will be resectable. In some cases when the liver is opened up it is deemed to be inoperable because there are freckles of tumors, meaning many small ones covering the liver. Dr. Pommier doesn't think mine looks like freckles from the scans. This is a 6-8 hour surgery depending on what they find when they get in there.  We have scheduled surgery for Friday, June 28. It will include 3 days in the ICU and a week in the hospital. Peter will drive me home for the 6-8 week recovery period. He and my parents will stay in a hotel near the hospital. Both my children plan to be there for the surgery. Several friends have said they'll come visit me on that big day and/or through out the week. I know I'll be surrounded by love from all of  you far and near.

Now I begin the work of making sure Group Health (GH) will pay for the surgry and hospital stay. I'll get that process completed in the 3 weeks before the surgery. Monday the 10th I have appointments with Dr. Feldman (GH) and Dr. Back (SCCA). I'll bring them up to speed on the plan with Pommier. Dr. Feldman's staff should be able to help me get the paperwork with customer services going.

Yesterday the biopsy's of the thyroid and left hip bone were completed. My parents and Peter accompanied me. They will result next week. I'm glad that part is over. I may be able to go the next few weeks without being poked with needles too much. What a luxery that is these days. I plan on enjoying the next 3 weeks and working at CDSA. I'll take a short term disability leave from work for 60-90 days. I'll be collecting good movies, books and CD's for the recovery period. Feel free to give me recommendations. I guess I'll have time to write in the blog. :-)