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.
This is such a valuable article. I hope anyone with this diagnosis reads it and takes this advise. I was diagnosed with an appendix cyst which was potentially cancerous; was scheduled for a hemicolectomy. What little time I had for research before my surgery date left me with many questions and many questions at the time I did not know I needed to ask. Fortunately I had an excellent surgeon who very carefully reviewed my CT scan and realized a hemicolectomy was not the surgery I needed. She referred me to a surgeon who has been doing cytoreduction with HIPEC for 10 years. I had a successful MOAS three months ago. I feel so fortunate my original surgeon recognized the treatment which would give me the best outcome. Yes, I needed to travel eight hours to reach the hospital. And yes, no family could visit me in the hospital because of Covid. Many weeks after the surgery I found a list of possible after effects of cytoreduction. I experienced about half of the things listed. I would have been better prepared to meet these after effects if I had found this list before surgery. Carolyn, would you address these after effects in a future blog?
Hello there! I am a 18 years survivor from Appendiceal Adenocarcinoma. Stage 3 since it was hard to tell if it had fully gone through the appendix wall.
It was found because I had an intermittent pain in my lower right abdomen and after going through an exploratory surgery they discovered that the appendix was attached to the ovary and removed the appendix, part of the ovary and did a partial heliocolectomy – all in the same exploratory surgery. Suspecting cancer the surgeon did a check of the abdominal cavity and liver and everything looked clean. The biopsy confirmed his decision.
After this surgery I became a patient of MD Anderson Cancer Center – Dr. Paul Mansfield. After he gave me all the options starting with the less invasive, which was observation, until the most aggressive of having another surgery for cytoreduction, and thinking about it for two weeks we agreed it was safe to only do observation. There was absolutely no indication that I had other tumors as the original surgeon was experienced enough to do the visual observation and removing part of my colon at once.
I met in the waiting room at MD Anderson other patients with the same type of appendiceal cancer that had to do the cytoreduction because in their cases it was evident the tumors had gone through the appendix wall. As for me, I only went through CT Scans, lab work and RX Rays every 3 months for about a year, then every 6 months for a few more years, then once a year for several years and was officially declared ‘cured’ in 2013 – 10 years after my diagnosis.
Writing because I think only the name of the cancer is not enough to make a decision on what treatment should be followed. I am very thankful that I trusted my doctors even if at the time there were recommendations in the internet of more aggressive treatments from other doctors in other states in USA.
It is possible that removing the appendix only without the heliocolectomy would have made the trick for me but I always felt much safer that it was done. None of the doctors I consulted (even friend doctors) ever stated I should not have had one. And I obviously did not need the cytoreduction after all. Did not have it and I am well (Thanks to God).
I think that each person should find the right doctor they can trust and take the time to listen, research and analyze ALL the information before deciding what treatment is best for them.
I was diagnosed with appendix cancer after an appendectomy.
The original surgeon wanted to do a right hemicolectomy (RHC) soon after pathology/diagnosis. I refused until I looked further into it.
I went to see two appendix cancer “Experts” and both wanted to do an RHC and would not consider doing exploratory surgery to see if CRS/HIPEC was truly necessary. They would only do exploratory if I agreed to an RHC.
There are terrible possible complications with a RHC (Stoma, fecal incontinence, etc.) which they don’t even mention. They expect you to simply do what you are told.
I just did not want to have my disease-free colon (Just had a colonoscopy) resected just because it is part of their script.
My suggestion is don’t get scared by the disease or get intimidated by the surgeons into doing something that may or may not be the right thing to do. If in doubt, get a second or third opinion. It is your life.