Appendix Cancer

Hi,

I'm new to this. I am 58 years old and in January of this year I experienced some unusual pain beliw my belly button, severe acid reflux with no fever. A CT showed I had diverticulitis and a mass in my appendix. In February my appendix was removed and I was told I had mucin that spread through out my abdominal cavity and that I would need to ha e a surgery that isn't fine in this state. The tumor had grown out of my appendix and was attached to my colon. The disgnois was stage 4 LAMN. April 23rd I had a surgery that is called the MOAS (Mother of all surgeries) at Wake Forest Baptist hospital in Winston-Salem. My surgeon is an appendix cancer specialist and has oreformed more of the surgeries than anyone in the country, Dr.Edward Levin. It is called CRS-HIPEC, which is basically where they cut my abdomin and went in and scraoed the mucin and temoved where it was located by using a Sorcialist laser. They removed the right side of my colon and respected it, removed my overuse, the peritoneal lining from my abdominal cavity and the omentum. Then, they massaged chemo all in my abdomin and then hooked me up to a machine woth probes and injected heated chemo at 104 degrees for 2 1/2 hours. I was asleep, of course. I had a spinal block and lots of meds after. it was a 9 hour surgery and a bery rough week in the hospital and then even more severe agonizing pain for another 2 months. After 8 weeks of recovery we went back to Wake Forest for my follow up CT scan. Dr Levin said everything was good and called me a cancer survivor. I will have CT scans every 6 months. This type of cancer does not show up in a PET scan. 

One in a million get this a year in the US. It is extremely rare and not many Docyors even know about it including oncologist. it's nit even listed on this sight as a cancer to check. I feel alone in this sometimes.  I look and feel normal again  But, read and hear of others who stories are very sad and I do t know where I fit into all this accept that I have survived a very tough surgery and recovery and pray I don't have to have it again as some have had to do  i know I'm blessed  I just don't know how to go through a day not thinking about my life being cut short and of this mucin shows up again will they be able to get it and well I don't feel joy like I use too  I try  just feel like I'm going through the motions