Do your own research and be your own advocate!!!
Saturday, April 17, 2010
By: Barbara Kane

Your doctors cannot be experts on every kind of cancer out there.

In April 2008, I had surgery to remove what was thought to be an ovarian cyst. It turned out to be a borderline mucinous tumour, and I was referred to a surgical oncologist. Before my appointment, I researched extensively to make sure I asked the right questions, wouldn't be overwhelmed by “cancer speak”, and would make the best decision for me. All of my reading led me to believe my diagnosis would be pseudomyxoma peritonei, a rare cancer usually (but not always) arising from the appendix and spreading to the peritoneum. The cancerous cells produce mucus, which collect in the abdomen as a jelly like fluid. If left untreated, vital organs and structures are compressed. The doctor wasn't convinced this would be the diagnosis, and it was up to me if I wanted a second surgery to remove my appendix, remove my remaining ovary, and do biopsies of my omentum and elsewhere. I opted for the surgery in September 2008, and am glad that I did. The results showed seeding on the diaphragm, and cancer cells on the other ovary and the omentum.
I was referred to another hospital and another surgical oncologist, and finally felt that I was with the right doctor. She ordered a CT scan for me, and the results showed only minimal disease. She arranged for a consultation with a pseudomyxoma peritonei surgeon in the United States. The U.S. doctor also saw only minimal disease, and told me I could “watch and wait” or have surgery now. It was not urgent; the timing was up to me. He cautioned that CT scans don't always show the full extent of disease, but I was still early. I decided to “watch and wait” until a change was detected.
Well, in December 2009, a change was detected, and I went ahead with the surgery in the U.S. (it cannot yet be performed in Ontario). My diaphragm was scraped, my omentum was removed, and mucin was removed from various organs. After the surgery (cytoreduction surgery), heated chemotherapy was put into my abdomen for about 1 to 2 hours (HIPEC) to kill any remaining cancer cells. The surgery went well, and the pathology report indicated DPAM, the low grade and “best” kind to have. There is about a 50% chance it will be back in five years, and an 80% survival rate after ten years.
I cannot stress enough the importance of being your own advocate and doing your own research. If I hadn't had the second surgery in September 2008, the mucin would have continued to collect in my abdomen, and when eventually detected, the surgery would have been more involved. This is a rare cancer, and some doctors/oncologists can go their entire career without seeing it. Even if the doctor is aware of it, they may not be up-to-date on the latest treatments.
It's a lonely cancer to have. There's no support group to speak of except in the on-line community. I have every intention of being around after ten years, and even longer. My daughters are six and eight, and I will see them grow up.