Suzanne Lindley, colorectal cancer survivor
"I've had to navigate the complex path of treatment possibilities on my own."

When I was 31 years old, I was diagnosed with stage IV colon cancer and told I had six months to live. I didn't accept that verdict: instead I sought out other opinions and began taking the only chemotherapy drug for colon cancer that was available at the time. That was 10 years ago.
Since I was diagnosed in 1998, several new treatments for colon cancer have been discovered, and I have had them all, including five new chemotherapies, the gamma knife, Sir-spheres, cyberknife, external beam radiation and intrathecal chemo for spinal metastases. Those are foreign words to most readers, as they were for me when I researched them all myself. If I had had a written care plan, with all the options outlined before undergoing treatments, it would have helped me make decisions and give me an idea of what to expect going forward. Instead, I've had to navigate the complex path of treatment possibilities on my own.
I have had numerous surgeries and side effects, and over the last decade my care has been conducted by several facilities and at least a dozen different physicians. There is no written summary of all the treatment I have received over the last ten years, so I've compiled copies of my medical records from several different facilities and physicians in four 3-inch binders. These are important because many cancer treatments produce late effects - conditions that show up long after treatment has been administered and can include damage to vital organs such as the heart, lung, bones, joints, bone marrow, nervous system and more. Some cancer survivors are at higher risk for serious infection, infertility, thyroid dysfunction, hearing loss, premature osteoporosis, anxiety, depression, and second cancers - conditions they and the other members of their healthcare team can monitor if they have a written treatment summary and follow-up care plan.
In the spring of 2008, I was again told my journey was coming to an end, but I have already outlived that prognosis. I still receive treatment, but I still have no written plan for my care going forward. It's scary –for instance, I once almost lost a leg due to a drug interaction that could have been avoided with a written care plan.
Hearing that you have cancer is enough to comprehend. No one should have to concern themselves with the amounts or types of chemo, procedures, or radiation they have received but should instead be provided with clearly delineated plans for moving forward.
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