A Rare Cancer Survivor’s Journey to Thriving and Advocating

In In The News by Barbara Jacoby

LLH network pressFrom: Inspire as posted on Scope

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often chronic diseases share their unique stories. In honor of the upcoming Rare Disease Day (Feb. 28), our latest comes from Tammy Andries of Madison, Wisconsin, a survivor of rare cancer.

When I was first diagnosed with a neuroendocrine pancreatic tumor I didn’t dwell on the fact that I had cancer. With three kids at home, I knew we needed to do all we could to beat the disease. I was 39 years old when I was diagnosed, I had always been healthy, and I knew that God was giving me signs that things were going to be OK. What I didn’t know was that He was giving me an opportunity to meet so many wonderful and caring people over the next eight years of my journey.

Like many others who are diagnosed, I had no signs or symptoms. My cancer was found completely by chance. I went into the emergency room, in a city we didn’t live in, with excruciating pain, and was told I had kidney stones. I was given pain medicine and told that the stones would pass. They never did. Instead, I ended up in another ER (in the city we had just moved to) with doctors doing a CT scan of my abdomen. They found an 8-cm mass on the head of the pancreas and told me to contact my primary care physician to schedule some more tests.

Shortly thereafter I heard those dreaded words, and through all of the tests, procedures and second opinions, I kept seeing signs that things were going to be all right. And so many gifted people were now in my life to help me through the diagnosis, surgery and recovery. The surgeon I had, confident and strong, yet so caring and compassionate. The young intern who sat with me at night and quizzed me on things so that he could present my case during rounds. Having a rare form of pancreatic cancer makes you something of a celebrity.

A few months after my Whipple procedure, I went to a symposium of the Pancreatic Cancer Action Network. It was at that forum that I knew what my next purpose was. I had lived through the frequent trips to the bathroom after meals, the not knowing if the twinges and aches I was now feeling were normal parts of the recovery or not, and the feelings of extreme fullness after having only eaten three bites of a meal, but I couldn’t live with the fact that no one knew much about this insidious disease and that research dedicated to pancreatic cancer lagged so far behind other major cancers. I got involved, and now I’m an advocate for others.

As time passes and the medical appointments get farther apart, I worry a little less. Knowing more about this disease has helped me become more confident in myself, my faith, and my ability to help others faced with the same word I once faced: “You have cancer.”

Tammy Andries is a volunteer and advocate for the Pancreatic Cancer Action Network.

– See more at: http://scopeblog.stanford.edu/2014/02/11/a-rare-cancer-survivors-journey-to-thriving-and-advocating/#sthash.bqO0PLpA.dpuf