Misdiagnosed, misunderstood, mistreated

I have been frustrated lately.  We have had several new people join the Facebook support group who have been diagnosed with appendix cancer and who have said they have been treated or will be treated with a hemicolectomy.  A hemicolectomy is not the treatment for appendix cancer, it is treatment for colon cancer.  Appendix cancer is NOT colon cancer.  When I was diagnosed, I was to have a hysterectomy for fibroids.  It was to be a laparoscopic surgery.  When they got the laparoscope in, though, they saw I had a ruptured appendix, so they just removed my appendix.  They saw it had a tumor, so biopsied it and discovered I had appendix cancer.  

I was a nurse and knew the surgeons at the hospital.  The chief of surgery, who was a wonderful person and an exceptionally good surgeon, told me the next morning that my cancer was very rare, and that I needed a hemicolectomy right away and that they would do it the next morning.  They felt I needed a hemicolectomy, because they felt that since my appendix was part of my colon, that I had a type of colon cancer, and treatment for a cancerous tumor on the colon was a hemicolectomy.  I needed that cancerous part of my colon removed. 

I told him that no, my cancer was exceedingly rare, and that I did not want to commit to any surgery or treatment until I had time to learn about my cancer and what treatments were available and indicated for my type of cancer.  

I went home and spent much time reading all of the medical journals and every article ever published about appendix cancer.  I learned that no, a hemicolectomy was not the surgery I needed for appendix cancer, that was the treatment for colon cancer. 

I needed a surgery called a cytoreduction surgery, a much bigger surgery, called by some a MOAS, Mother of All Surgeries, in which the entire abdomen was searched for any small cancerous tumors and organs affected by those tumors. Those tumors and organs were removed, followed by chemotherapy placed directly into the abdomen.  So, I sought THAT treatment.  I am a 19-year survivor because I was treated for appendix cancer and not colon cancer.   

The sad thing is, those who have the hemicolectomy and have their appendix cancer recur and THEN go to a specialist have a lesser chance of successful treatment.  Successful appendix cancer treatment also depends on a “prior surgical score”.  When you have had major surgery before you have the cytoreduction surgery for appendix cancer, you develop scar tissue and adhesions in your abdomen which makes the cytoreduction surgery more difficult and interferes with the circulation of the HIPEC chemotherapy in your abdomen after the surgery.  I’ve known several people who have had major surgeries more than once for appendix cancer recurrences before they FINALLY went to a specialist. their outcomes were not good.  

Many diagnosed with appendix cancer want to stay with the doctors and surgeons and oncologist that they know and love at the facilities near their homes.   They know and trust these doctors and believe they have their best interests at heart.  And all of that is true!  The surgeons and doctors at my home hospital were wonderful and knew me personally and wanted the best for me and wanted to see me cured.  But they had never seen a case of appendix cancer.  They were very familiar with colon cancer, and since the appendix was part of the colon, it just made sense that it was another type of colon cancer.  They had never been taught about appendix cancer in medical school…. why would they devote time teaching about a disease that will affect .000004% of the population?  

 So many people diagnosed with appendix cancer are not seeking out appendix cancer specialist who specialize in cytoreduction surgery and HIPEC.  I want to do all I can to change that.   It is the most IMPORTANT THING those newly diagnosed can do.