I hope sharing my journey with non-mucinous colonic-type appendiceal adenocarcinoma is helpful to someone else who has been diagnosed with appendix cancer.
My story begins in late January 2010, when I had a pain in my abdomen after a long walk. It turned out that I had a 6.5 cm tumor in what-used-to-be my appendix. The tumor had started invading part of my colon and the end of my small intestine. I had my appendix removed along with a right hemicolectomy and 21 lymph nodes which were all clean. Here in Austin, TX, no one knew how to treat appendix cancer so I phoned up MD Anderson Cancer Center, sent them all my records and was able to get in to see one of three MDA doctors specializing in appendix cancer. At my first visit to MD Anderson (8 weeks after my first surgery), the CTs showed another tumor had grown to 5 cm in that 8-week period. Things looked grim.
I had 6 months of weekly aggressive chemo in the hope that the chemo would shrink the second tumor enough so that any remnants of the tumor could be removed. After removing all the tumor bits, I would undergo HIPEC at MD Anderson. HIPEC stands for “heated intraperitoneal chemo” which is administered right there in the operating room after removal of the tumor(s). The procedure involves a machine to heat and maintain the chemo to a set temperature, just high enough to kill cancer cells but not regular cells. The chemo is circulated through the peritoneal cavity via a tube going in and a tube coming out of the cavity and back through the machine to maintain the temp. The surgeon stitches the patient up temporarily and then rocks the patient for about 90 minutes to ensure the chemo is sloshed into all the nooks and crannies. There’s a reason they call it “MOAS” – the mother of all surgeries!
Amazingly, my pathology came back clean! No evidence of disease. My surgeon cleaned out the tumor, took biopsies of my cavity before the HIPEC procedure and all biopsies came out negative for cancer cells. I had a complete response to the chemotherapy. No need for the heated chemo! Whew. But because my cancer had been so aggressive, I underwent another 3 months of post-surgery chemo just in case any cells had been missed. Since then, I’ve traveled to MD Anderson in Houston for 3-month, 4-month, 6-month and now annual check-ups. All tests have shown no evidence of disease. As of this past November 2022, I have been clean for over 12 years.
I’ve been down to Houston to visit with fellow appendix cancer friends who are in various stages of treatment or check-ups. I know it’s a lonely diagnosis so it can be so great to talk with someone who’s been there and done that. Along the way, I was blessed with an extraordinary amount of support from friends, family, nurses and doctors. So it’s good to give back.
You are amazing. Big hug and powerful healing thoughts your way!
Thanks for this blog! I’ve just been diagnosed with appendiceal adenocarcinoma discovered during a hysterectomy. I’m waiting to get into MD Anderson for further evaluation and treatment. I greatly appreciate your courage and perseverance!
I haven’t seen an update recently, just wondering how you are doing? Thank you! Donna
I’m doing well. Vaccinated against covid-19! Thanks for asking!