I have been in the appendix cancer community now for almost 9 years, I was diagnosed March 29, 2001. I have communicated with about 800 people newly diagnosed with appendix cancer and with their families since my own diagnosis.
Many learn of those who have lost their battle or read some of the more dismal statistics. Ours is a very difficult cancer. I've communicated with a few appendix cancer patients who have also had breast cancer, they've said breast cancer was a breeze in comparison. I kind of think if I am ever diagnosed with breast cancer, it will be kind of like a cold in comparison to pneumonia. Short-term chemo, minor surgery, great survival stats, lots of support and research, and lots of public awareness...though I would lose my hair with that chemo. Much different from our massive surgeries, prolonged surgical recovery, prolonged chemo and absence of support. Ours is a difficult and lonely cancer. Hope is hard to find sometimes.
I have had patients ask me if there are other long-term appendix cancer survivors out there. I know there are...not as many as have survived breast cancer, but I know we do have some. I have been contacted by a few, but only a few long-term survivors. I think most who find me and contact me are the newly diagnosed, though I think it's interesting that some long term survivors have found my site. They are still googling appendix cancer even years down the road. It never really leaves us, we never fully move on and forget the battle that forever changed our lives.
My good friend who recently passed asked me if I could find a way to add survivor stories to my blog and website. I would love to do that. We all need hope.
I am asking for anyone who is a long-term appendix cancer survivor (3 years or more) to share their stories. I could post them as guest posts on my blog, or if you are willing, I would create permanent links to survivor stories on my both web site and blog. The stories would need to include your pathology (mucinous adenoma, mucinous adenocarcinoma, adenocarcinoid, signet ring etc.) along with tumor grade (well-differentiated, moderately differentiated, poorly differentiated etc.). If you are a long-term survivor, even with recurrences, that also counts. One woman wrote me who has survived appendix cancer for 20 years with periodic recurrences...she has never been cancer free, but married, had a child and has lived a full life WITH appendix cancer for two decades.
If you are willing to share your success story that so many desperately need to fuel their battle, please consider helping those newly diagnosed.
If you are willing to help, please email me at firstname.lastname@example.org.
And a very heartfelt "thank you" in advance.
Monday, March 15, 2010
Posted by Carolyn Langlie-Lesnik RN BSN at 9:52 PM