Appendix cancer survivor: Take an active role in your treatment

Six years ago, I was diagnosed with appendix cancer, a very rare cancer diagnosed in less than 1,000 people in the U.S. each year.

It all began after a trail hike when I felt a tender pain in my lower right abdomen that wouldn’t go away. I went to my local doctor in Austin, Texas, and an ultrasound revealed a 6.5-cm tumor in my appendix. I had my appendix removed as part of a right hemicolectomy, and my lymph nodes tested negative for cancer cells. My doctors didn’t know how to treat appendix cancer, so I asked to be referred to MD Anderson.

My appendix cancer treatment at MD Anderson

During my first visit to MD Anderson, I met my surgical oncologist, Paul Mansfield, M.D., who ordered additional testing. That’s how we learned my appendix cancer had metastasized.

From the first time I met Dr. Mansfield, I was impressed with his familiarity with appendix cancer. He explained my diagnosis in clear terms and discussed possible treatment approaches with plenty of time for my questions. I appreciated his honesty and his one-step-at-a-time approach to my cancer treatment.

Since my initial visit to MD Anderson, I have made the 3-hour drive from Austin to Houston more than 20 times. I’ve had 16 CT scans, two surgeries, procedures, countless appointments and a three-week stay. Thanks to my family, friends and care team, I celebrated my sixth cancerversary with no evidence of disease last month.

My voice matters

I’ve been on a long cancer journey since that trail hike, and one lesson that stands out is the importance of being in the driver’s seat of my own treatment.

After my diagnosis, I researched everything about my type of cancer. I went to my appointments with 40-plus questions about my diagnosis, the chemo treatment to shrink my second tumor and future surgery to clean out remnants of any tumor. On more than one occasion, Dr. Mansfield spent almost an hour with me, patiently answering my questions. My husband took notes at every appointment.

When it came time for my big surgery, Dr. Mansfield gave me a choice of whether to have one additional component included with my surgery. He believes that patients often have better overall outcomes when they play an active role in their medical care. This approach reconfirmed that I definitely have a voice in my own care, that it was well worth it to have done my own research and have a good understanding of my diagnosis. It was a very difficult decision for me but also a compliment that Dr. Mansfield trusted and respected my judgment. Because I have a brain condition that causes seizures and risk of hemorrhage, I ultimately chose not to have the additional portion of the surgery.  

How myMDAnderson and MD Anderson helped me

Taking notes and documenting my care helped me ensure I received the best care. I recorded the chemicals I was receiving at every chemo treatment. I also used the myMDAnderson portal to coordinate care between MD Anderson and my local oncologist and chemo clinic in Austin. Because I had a copy of my chemo orders from MD Anderson, I once discovered an error made by my local chemo clinic. I realized they had overlooked two prescribed compounds to reduce sensory neurotoxicity, such as peripheral neuropathy and muscle spasms. I was so thankful that I could reference my MD Anderson chemo orders, catch the mistake and have the local chemo clinic correctly add the compounds into my chemo treatments.

As I tell other patients, stay in the present as much as possible. Take things just one day at a time, step by step. Ask as many questions as you want since it is the unknown and accompanying imagination that tends to bring on fear.

Asking questions is the best way to ensure you have a voice when it comes to your care. My care team also has helped empower me. I feel respected as a patient when my care team listens and addresses my concerns patiently and is available for additional questions. Based on my experience, I can trust my care team and feel confident in their care.

As I told my husband on my first visit to MD Anderson, “If there is such a place, this must be cancer heaven!”