Merry Christmas! Today is Christmas Day, soon to be followed by New Years Day. It is a new season. Cancer is also a new season in our lives. It’s a new beginning of sorts, not one we would have chosen, but a new beginning never-the-less. Many of us make New Year’s Resolutions, and with our cancer, we also need to make resolutions. Where we will look for answers, where we will find treatment options, what treatment options we will choose.
When I was first diagnosed during a routine appendectomy (which was actually supposed to be a female surgery initially), I woke up and my doctors told me my cancer was very rare, they needed to go home to learn about it. The next day, my very good surgeon (I know the good ones, I’m a nurse) told me I needed a right hemicolectomy. He was going to remove a portion of my large colon and lymph nodes, I would then need chemotherapy. I knew this was the way colon cancer was treated, but I also knew I didn’t have colon cancer, I had appendix cancer. I told him instead I wanted to be discharged (only takes a day to recover from an appendectomy) and I wanted to research my rare disease before I decided on any treatment.
A large university hospital known for it’s cancer care told me I was untreatable, and they knew I didn’t have colon cancer. They felt my appendix cancer was untreatable; they said as I had ruptured my appendix I had seeded my abdomen with cancer cells that would soon become many more cancerous tumors in my abdomen that would kill me, that there were no treatment options to prevent this.
I didn’t accept that and started reading every medical journal article I could on appendix cancer. What I found was that I did need the hemicolectomy that my surgeon recommended, but in addition, I needed cytoreduction surgery, they would have to look throughout my abdomen for any other small tumors created by my appendix cancer and remove them. This would need to be followed by chemotherapy directly into my abdomen to prevent any microscopic cancer cells released into my abdomen from causing a recurrence of my cancer.
I found a specialist who offered me this treatment option.
It took me many weeks after my diagnosis to be treated with the cytoreducation surgery and intra-abdomenal chemotherapy, but getting the right treatment the first time saved me. I am now a 16 year cancer-free survivor.
I know of many who wanted to be treated right away, they want the cancer out immediately!! Many are treated as colon and not appendix cancer, they do not seek out appendix cancer specialists for treatment. As you can see by the map on my web site, there are not many appendix cancer specialists, almost all of us have to travel, we have to wait for treatment.
It makes me sad when I meet appendix cancer patients who have the wrong surgeries for their appendix cancer before finally being seen by an appendix cancer specialist after their first surgery has failed. In this research article, Extensive surgical history prior to cytoreductive surgery and hyperthermic intraperitoneal chemotherapy is associated with poor survival outcomes in patients with peritoneal mucinous carcinomatosis of appendiceal origin.
, it was found that patient’s who have extensive surgery prior to seeing a specialist for specialized appendix cancer treatment have poorer outcomes. The scar tissue and adhesions caused by the prior surgery (surgeries) makes the cytoreducation surgery and heated intraperitoneal chemotherapy less likely to work well.
Seeing an appendix cancer HIPEC specialist is the MOST important thing you can do when you are diagnosed, even if it means leaving your trusted physician and surgeon. Even if your treatment it delayed. Even if your family has to travel to visit you. I am a case in point. I wasn’t treated with ANYTHING for almost 2 months after my diagnosis. I traveled across the country to see a specialist. I spent weeks away from my home and children while receiving treatment.
But in the end I got to watch my children grow up. I got to celebrate my 30 year wedding anniversary. It was worth it.
Cancer is a new season in our life, but hopefully one that will lead to many more new seasons if we make the right resolutions.