When I was diagnosed with a rare cancer at the “stump” of my appendix, I was surprised, considering I had my appendix removed more than a decade ago.
When I was diagnosed in the fall of 2022with a very rare form of cancer, it was the last thing I expected to learn from my primary care physician.As in many cases, my cancer was found completely by accident. I had a routine low-dose lung scan as I am a former smoker. That scan showed that my lungs were clear, but I had a spot on my omentum. Further testing, includingnumerous tests and scans, showed that my primary cancer was in the stump of my appendix. I had an appendectomy 14 years ago!
I had six cycles of chemo locally in Western Massachusetts and this past June I had major surgery at Tufts Medical Center in Boston. This was supposed to be what is know as HIPEC surgery, a specialized debulking surgery along with a heated abdominal chemo wash. It was everyone's hope that the two areas that had shown up on the scans would be the only disease and once removed, my cancer would be history.
That was not the case, as my cancer is mucinous adenocarcinoma (and goblet cell cancer which is almost as rare as appendix cancer with no appendix) of the appendix and had spread throughout my abdomen. By the time the surgery was finished, I lost two, four-inch sections of my intestines, my omentum, my spleen and half of the lining of my diaphragm — and that was only 70% if the cancer.
The surgery was over, and things went OK until the next day when my body crashed. I was given a 40% chance of surviving and was placed in a medically induced coma. I went into kidney failure and always placed in dialysis for about a week. Then things began to improve. My kidneys went back to normal function. I was no longer in ICU. After threeweeks and two days, I was finally discharged to come home.
My recovery was very difficult as my incision began at the breastbone and went to the pubic bone. I was sore and weak, not able to walk without a walker and help. I wasn't able to eat much. I spent approximately 18 hours a day sleeping. It was the hardest part of all of this journey so far.
I was able to go back to my local doctors and cancer center in August and it felt like a homecoming. My doctors and my nurses are some of the most amazing human beings. They have been instrumental in keeping my spirits up and helping me through the bad days as well as treating me with so much respect. I firmly believe that those people who are working on your care team are one of, if not the most important part of any cancer journey.
If I were to give my younger self any advice it would be this. Please get those annual scans and screenings! This is what has saved my life to this point! Allow yourself the time to process the news if you are diagnosed. Don't panic. Get your healthcare team all on the same page and let them help you find the very best course of action. Let yourself have an occasional down day and enjoy those good days to the best of your ability!
This post was written and submitted by a CURE reader. The article reflects the views the author and not of CURE®. This is also not supposed to be intended as medical advice.
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