Support Group; surgery Friday

Went to my first support group meeting yesterday for people with NET/Carcinoma. Lots of different stories were presented from the 30 or so in attendance. Several people had the same operation I am having with Dr. Pommier in just a few days. Some surgeries were 10 hours in length. One guy had 50 tumors removed. Others described laparoscopic (through the belly button) compared to stitches across the abdomen for larger liver surgeries. One nice guy from Salem said he was happy to see a large scar across his middle when he awoke because he knew they were able to do surgery on his liver. He has a large bell shaped scar that starts on one side of the body at the rib cage and travels across to the other. His sounded the most similar to mine in that it was unknown primary with heavy liver burden.  People have done a variety of treatments and different types of surgeries with names I couldn't pronounce let alone write down in my notes to share with all of you. Some people were diagnosed 6 months ago like me, others were describing journeys with 10-15 years worth of managing the disease. There was a discussion about how MRI's are 20% more accurate than CT scans and they don't involve the radiation that CT's do. It was advised that we cancer patients try to get less radiation and decline CT's when they are suggested for us, requesting a MRI instead even though they are more expensive for the health provider. There is a new scan, Gallium 68, becoming available that can see tumors and primaries that are much smaller (1 cm) than what the CT scans, PET scans and MRI and Octreotide scan can see. The liver tumors we can see are 4-5 cm. The new scan will be really helpful for people like me with unknown primaries. The only place to get it in the US is Nashville for now. A Dr. Lu there is building a NET clinic that specialized in NET/Carcinoids similar to Dr. Woltering's clinic in New Orleans. Lot's of clinical trials were described for new treatment drugs.  It was neat the Dr. Park at SCCA had done one persons surgery and Flavio Rocha from Virginia Mason (VMMC) an other's. They were both second opinion surgeons that deemed my liver stage 4 inoperable. Four people at the event had Dr. Feldman at GH as their main oncologist. Several people were asymptomatic while others had severe diarrhea, flushing, wheezing, sores in the mouth and rash's.  Weight loss and fatigue were issues to manage for most. I am very lucky that I am practically symptom free. Actually it isn't all luck since several others said if they ate a high protein, low sugar diet they experienced less symptoms. That has been my experience.

Most exciting was that the experts at the meeting believed that there is a huge push from Doctors in the US and Canada and drug companies to move forward on research with NET/Carcinoma. There is new research going on at many US colleges.

Today I'm staying home because unfortunately I caught a cold and it has gone into my ear. I swam 50 laps yesterday, crawl stroke, but got some water in my right ear. It is still blocked, ringing and sore. I may go in to see my primary care doc tomorrow to see if we can get the ear open prior to surgery.

I have arranged for the mail to be brought in and yard watered. The hotel is all arranged for the family.

This week I should hear more abut the thyroid but it isn't as important as the liver so on to the surgery we go. I'm working through Wednesday and have a CDSA board meeting on Tuesday.


 I've asked Peter to post the results from the surgery when he hears them from the doctors on Friday. Those of you checking the blog might find out before I do if they were able to find the primary or remove tumors from the liver. :-)