Advocating for Liver Cancer Patients

November 11, 2019

Liver cancer is often one of the overlooked cancers.  The numbers are small relative to some other cancers (the American Cancer Society estimates that there were about 42,030 new cases of liver cancer in 2019).  Yet, the incidence has grown markedly, more than tripling since 1980.   The growth in the number of patients living with liver cancer has brought new attention to this disease.  Research into liver cancer is growing rapidly and Cancer Support Community is doing its part by launching a new patient-centered survey – read on!

For many liver cancer patients, the experience of living with the disease differs greatly from that of people with other cancers. Liver cancer patients are often living with another chronic condition such as cirrhosis, hepatitis, or other type of liver disease. There are multiple treatment options for liver cancer, depending on the progression, but some of these methods are still evolving.  Also, because there are fewer screening options for detecting liver cancer, patients are sometimes diagnosed at a later stage when the disease is more advanced and more difficult to treat. 

What impact does a liver cancer diagnosis have on a patient’s quality of life? A liver cancer patient may be treated by multiple specialists due to the nature of their disease, which has implications for communication and coordination. How does a liver cancer diagnosis affect a patient’s finances as they juggle multiple doctors’ visits and treatments? These are just some of the questions that the Cancer Support Community is trying to find answers to in order to better support and advocate for liver cancer patients.

To better understand this complicated patient experience, the Cancer Support Community’s very own Research and Training Institute created a new specialty registry dedicated to liver cancer that is part of their flagship project, the Cancer Experience Registry®.  Launched in September, this survey explores several themes pertinent to the liver cancer experience such as social life, physical well-being, work, stress, financial impact, treatment decision-making, and more.  The goal of the survey will be to better understand the nuances of living with a liver cancer diagnosis and to identify areas of unmet needs and wants among liver cancer patients and caregivers.

We want to hear directly from liver cancer patients about their specific and unique cancer experiences so that we can enhance our educational programming, advocacy initiatives, and other patient support initiatives to aid those people living with liver cancer.

Please join the Cancer Experience Registry®: Liver Registry today. Help us deliver the type of information that liver cancer patients like yourself need and want by including your voice.