My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Sunday, October 11, 2009

Being Your Own Advocate

One thing I've learned in my life in the cancer community is how important it is to be your own advocate.

I had an advantage at the time I was diagnosed in that I was already a medical professional. I had great doctors and surgeons locally, but being around physicians daily for years, I had never bought into the "doctor as God" mentality. I trusted and respected my doctors, and being in the medical profession also meant I knew who the good doctors and surgeons were so I was always cared for by the best.

When I was diagnosed, my surgeon told me I had a rare cancer, and he wasn't sure exactly what the treatment might require; he would do some research and get back to me. In the end, I was told that in three days they recommended I have a hemicolectomy, as they knew I needed that. The plan was to not discharge me from the first surgery, but to proceed directly with the hemicoloctomy.

I requested instead to be discharged without the hemicolectomy. If I was going to have a major surgery, I told them, I wanted only one major surgery, and I wanted to have the correct surgery the first time. I wanted to do some of my own research into the disease before I proceeded with further treatment. My surgeon understood and discharged me from the hospital. He respected my decision.

I went home and spent hours and hours on the internet looking for medical research studies related to appendix cancer. It was hard...there was little information and the information I did find didn't show very good survival statistics. Doing the research was very difficult emotionally; I realized how serious my cancer was. I so wished I instead had breast cancer or another cancer with 80-90% survival rates, a cancer that had extensively published research and standardized treatment protocols. Again, though, I was fortunate that being a medical professional of many years, I was able to read and interpret the medical research articles I did find.

From my research, I felt my best prospects seemed to be a cytoreduction surgery and peritoneal chemotherapy. I also decided I needed a surgical oncologist and not a general surgeon.

When I first met with my local oncologist, she agreed that my cancer had a poor prognosis and for optimal treatment I needed to see a surgical oncologist at a university hospital in nearby Chicago. She agreed I needed a cytoreduction surgery, not just a hemicolectomy. When my medical records were sent to the surgical oncologist, though, my appointment there was promptly canceled; I was told they had no treatment available that could help me based on the high grade of my tumor and appendiceal perforation. They said my cancer would become widespread into my abdomen and that I would eventually succumb to it, I would not survive. Had I accepted that respected surgeon's initial evaluation, I would not be alive today.

In the end I did my own research and referred myself to Sloan-Kettering as I knew they offered cytoreduction surgery and peritoneal chemotherapy for appendix cancer. I told my local oncologist I had self-referred and made an appointment to be evaluated there, a decision she in the end supported.

I went to my initial appointment at Sloan loaded with intelligent questions based on the research I had done about my disease. I requested peritoneal chemo within 24 hours of my surgery, which wasn't in their original plan, and that request was granted. I requested to add to the surgical consent another procedure, the insertion of a portacath for future IV chemo vs. having a second later surgery at home for that procedure, that request was also honored. I was able to have input into the size of my abdominal incision (no, vanity isn't a concern, open me as wide as you need to take a really good look!). We also agreed that my ovaries should be removed though there was not yet signs of metastatsis there, as appendix cancer so commonly spreads to the ovaries, and I was at risk due to the perforation. Even after my surgery I asked that my pain medication be changed from morphine to a powerful non-narcotic pain medication that I preferred, Toradol; that request was also honored. I think not being on narcotics for pain prevented post-operative nausea, helped me stay more awake and active as I recovered and helped my bowel function return to normal sooner.

In the end I was successfully treated, though treatment was delayed a month and a half while I did research and sought opinions. I am so glad I didn't agree to the initial hemicolectomy offered by my general surgeon who felt my cancer was a form of colon cancer and needed to be treated as such. As it turned out, I had other small tumors in my abdomen and needed more than a hemicolectomy. I don't know if those smaller tumors would have been discovered by a general surgeon during a hemicolectomy, they were not discovered during my initial exploratory laparoscopic surgery or CT scan. If I'd had the hemicolectomy locally, I also would not have been offered peritoneal chemotherapy, which I think was important to my long term recurrence-free survival. If I'd initially had the hemicolectomy and had a later recurrence, scar tissue and adhesions would have made a second surgery with peritoneal chemo potentially less successful.

I think it's important, especially for those of us with rare or difficult cancers, to seek more than one opinion (I had three prior to definitive treatment) and to be educated enough to know what our choices may be...and to find, as I was fortunate enough to have found, a surgeon who respected my right to have input into my treatment. A surgeon who treated me as a partner and team member in making treatment decisions.

There are many things important to survival, but I think one of the most important things we can do, hard as it may be, is to educate ourselves early on about our cancer and to become our own advocates. We need to be able to make informed and intelligent decisions, and to actively participate in our treatment decisions.


Alice R. said...

Carolyn, your experience certainly helped me. I, too, know the importance of being your own advocate. I, too, had to weigh several approaches from several drs, including 2 very different approaches (and prognoses) from drs at MSK. Dr. Paty's approach made the most sense; he felt no need to rush me into my next surgery or into the IP chemo, tho both were necessary. His approach was reasoned and level-headed, not panicked and doomsday. Another dr wanted me to start chemo instantly, and skip the IP and further surgery, but also told me I'd be dead in 2 years. (I'm not.) Dr. Paty was available to me, and respected my fears and concerns and needs. It helped, however, having a family member with me at all times in the hospital (28 days).

Carolyn, your advise is excellent, and your blogs have helped me greatly.

Beaded Jewels said...

I am sorry about your struggles. If you need friends during your journey youcan find me at

Carolyn Langlie-Lesnik RN BSN said...

Hi Alice,

Thank you so much for your kind words. My experience with Dr. Paty was exactly the same. He was concerned, caring, reasoned and was the first person to offer me any hope after my diagnosis....I'd only had "doomsday" predictions to that point. I will forever be grateful to him for that. He is a special person and excellent surgeon. I'm so glad you are doing well!


Graham Davies said...

Carolyn, I wish I had found your blog in 2006 when I was diagnosed with "a rare from of cancer" that affected "one in a million" - yes, that's all I was told about it.

Post-op I was told I had a urachal mucinous adenocarcinoma and that I could not look forward to "years" of survival.

I first heard the term PMP when I met the oncologist responsible for after-care. He was more upbeat and referred me to a specialist PMP hospital in Basingstoke, UK, only 45 minutes by car from where I live.

Since then I have had regular CT scans at Basingstoke and I remain 100% PMP free. I feel great, and at the age of 67 I am looking forward to my skiing holiday in Austria in January.