Merry Christmas and Happy Holidays to everyone! I would like as many of us as possible to come together as an appendix cancer community. It’s hard to find someone else who knows what we go through as our cancer is so rare. While I feel for anyone who has been diagnosed with cancer, I do admit to sometimes feeling resentful at the amount of support and research money breast cancer receives. There are more breast cancer support groups and fundraisers than anyone can count. I I had a sister-in-law who was diagnosed with breast cancer, and she lived many years with Stage IV breast cancer, there was always one more new chemotherapy or treatment that had been discovered through research that prolonged her life. The disease did take her almost a year ago though. I had a bit of survivor guilt, as when I was diagnosed, I wished so much that I’d had breast cancer instead. The outcomes statistically were so much better than for my signet ring appendix cancer, and I knew much more research and support were devoted to that cancer. But in the end I survived my cancer, and she didn’t.
I hope those of you reading those will consider joining the forums I now have on this site and commenting on the blog, it can serve as a support group where we can communicate with and reach out to each other. We won’t find appendix cancer support groups in our community as our cancer is so rare. There is security required to signing up on the forums, which is kind of a hassle, but I think that’s a good thing. I had a forum with a previous web site that ended up being spammed so much it was hard to use, I don’t think this one will be. And I promise to participate in the forums and to moderate them, you won’t be alone!
I’m making it a New Year’s resolution to be more involved in this website with it’s blog and forums, I started a new job about 2 years ago that kind of over-whelmed me, but I am working on balance now. I want us to be here for each other.
Again, Happy Holidays! I will be here!
Newly diagnosed and very sacred
Diagnosed about a month ago. Still shelled shocked.
Thanks so much for this. My mother has appendix cancer and will definitely suggest she join you here. Sending all the best.
I was in for a hysterectomy due to chronic pelvic bone pain and my doc took my appendix because it looked funny. Test results came back as appendix cancer LAMN. I’m thankful it was caught early but paranoid their could still be cells in my abdomen. I am having a colonoscopy as soon as I am recovered enough to do so.
There! Colonoscopy is to check to see if there was any spread to the colon. No one in my area is very familiar with appendix cancer. Should I ask for a CT scan as well?
I had my appendix out 2 years ago, my diligent gp resubmitted my slides to pathology and 10 days ago they came back positive for LAMS and unclean margin. In 10 days ive had blood tests, multiple scans, a meeting with an oncologist and a meeting with a surgical TEAM. Oh and a colonoscopy- its spread i have a colorectal on the 18th of dec and they will take some lymph nodes and sample the peritoneum . My head is spinning. I never heard of this before last monday. 2 years ago the dr said all is fine. Now im talking to oncologists, surgeons, colon cancer, LAMN, appendiceal neoplasm…. too much to take in. Then i just hope im home for xmas to see the kids open their gifts….