I recently spoke with a friend about the things I had planned for Cholangiocarcinoma Awareness Month. She wondered if anything we did could actually make a difference. It’s not like we could raise a substantial amount of money for research or cause more studies to be done simply by wearing t-shirts or by putting up signs, green light bulbs or bumper stickers. To be honest, I have also pondered this myself — what difference could I possibly make?
I will get to that after some background information. Cholangiocarcinoma is a rare, aggressive cancer. It is so rare that many people have not heard of its common name: bile duct cancer. Unfortunately, many medical providers are also not aware of cholangiocarcinoma and do not order testing in a timely manner. As with everything, an early diagnosis is the key to survival.
Cholangiocarcinoma is a silent killer, meaning that by the time someone shows symptoms, they are often in the later stages. This, combined with the lack of knowledge, results in a dismal prognosis. Based on data from 2012-2018, cancer.org reports typical five-year survival rates around 9-11%. The odds are not in our favor.
So far, I have been one of the lucky ones. Many people pass within a few months to a year after being diagnosed. I have actively been fighting cholangiocarcinoma for about three and a half years, but it has been four years since I began showing symptoms. None of my medical providers, including my gastrointestinal doctor, considered my liver to be the cause of the significant weight loss and constant nausea that I experienced.
It was not until I had severe abdominal pain several months later that I finally had an abdominal ultrasound. By this time, my disease was stage 4. I had a 10-cm tumor in the middle of my liver and several suspicious lymph nodes throughout my chest and abdomen. I was not a candidate for surgery; my only option was palliative chemotherapy. There I was at 49, newly diagnosed with what my oncologist called “an old man’s cancer,” facing the fact that my life was about to take a dramatic departure from what I had envisioned. It is still surreal to me even now. I was a therapist who worked with cancer patients, then suddenly, I was the patient.
I always thought I would be the type of person who would sit in the darkness feeling sorry for myself if I ever was diagnosed with cancer. However, when it actually happened, I decided that if I was going to be stuck with this monster of a cancer, I was going to embrace it. It was not going to drag me down. At some point I came across a photo of a billboard about cholangiocarcinoma. I was so impressed by the magnitude of exposure it created that I tried to engage local facilities, organizations and news outlets with only limited success. As a result, I decided to be the billboard. Since then, I have designed signs, T-shirts, sweatshirts, jewelry and bumper stickers to help spread awareness. But again, the question remains, what difference could any of those things possibly make?
Naturally, I have no way of knowing for sure, but I like to think that every bit of exposure has an impact. People constantly stop and ask me what cholangiocarcinoma is when they see my shirts and bumper stickers. I’ll also occasionally meet someone who has a loved one battling cholangiocarcinoma or lost a loved one to it. I always use “cholangiocarcinoma” in my designs because it is such an odd word. I think it catches more people’s attention and may cause them to look it up. Although my designs may not result in money being spent on research, perhaps they may pique the curiosity of a medical student who might then decide to study GI cancers. Maybe that student will eventually choose to conduct research that would help bring us closer to a cure. Perhaps a medical provider will see my work and educate themselves about cholangiocarcinoma. Then they might consider it as a potential diagnosis because they knew what symptoms to look for and what tests to order.
However, I think the biggest potential impact is on the individual level. Maybe someone who has been ill will see my shirts or stickers and look it up. Then, maybe it could lead that person to be their own advocate and get an earlier diagnosis which could lead to a better chance of survival. I think it is reasonable to believe that my actions might help at least one person. To me, one person is significant. If just one person benefits from me being the billboard, then that’s all the convincing I need to do everything possible to continue on my path of spreading awareness.
This post was written and submitted by a CURE reader. The article reflects the views the author and not of CURE®. This is also not supposed to be intended as medical advice.
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