CancerSurvivalRates.com is up

Creating cancersurvivalrates.com has been a bittersweet journey. We wish that such a site were not necessary, either because cancer is a non-factor in all of our lives or that prognosis information is well understood by every patient and family that wants it. But so long as cancer claims the lives of one-quarter to half of all people, providing information about cancer survival rates to those searching for it will be needed.

We decided to build cancersurvivalrates.com for two reasons: First, we believe there is an unmet need among a large number of people searching for information about survival rates and life expectancy with cancer. Second, we believe we can provide better answers and better questions to ask doctors. We hope that people with cancer and their families use our site to experience a better quality of life, no matter how much time is left. We also aim to help the caregivers, physicians, and nurses caring for patients, especially with communication.

Our journey started with a conversation. My co-founder, Omar and I were discussing a story about a man with metastatic lung cancer who never was told how much time he had left, leaving the man in the dark about his own health status. Omar had mentioned that his mother-in-law had been diagnosed with cancer and hadn’t received detailed prognosis information either. A quick search on PubMed and a few conversations with physician friends sparked an idea: Why not make a very simple website with survival statistics for all cancer types? The research showed that a significant percentage of patients weren’t receiving or understanding prognosis information.

As healthcare and start-up veterans, we asked ourselves: How hard could building something that looked like a calculator for retirement savings or a monthly payment for auto loan be? Isn’t all the data out there and pre-summarized? Two years later, I can say that the answers to these questions and anything remotely to do with cancer is “nothing is easy when it comes to cancer.”

Nevertheless, we dove in. At first we were going try to keep it simple by publishing already compiled information from the National Cancer Institute at NIH. Then we had an idea: Why not source our data from NCI and build all new statistical models that compute survival rates for each cancer type given a set of inputs such as age, diagnosis date, stage, grade, and histology. We noticed that a number of other sites that had statistical models (or nomograms) were either quite dated or far too technical for patient use.

So with the help of Dr. Emily Marlow, an Epidemiologist at the University of Wisconsin, we built 30 Cox Proportional Hazard models using data from the National Cancer Institute SEER database that contains roughly 30% of all cancer cases from a broad national sample. We used 12 years of data (from 2004–2015) to create 5 year, 2 year, and 1 year survival rates for each cancer type. All technical details are on our Courage Health website.

We were very fortunate to bring on Dr. Jim Murphy, an Oncologist from Moores Cancer Center at UCSD who also had a lot of expertise in epidemiology and cancer data to advise us on model development. Dr. Murphy introduced us to Dr. Drew Bruggeman and Dr. Aaron Simon also in the Radiology and Oncology Department at UCSD Moores who helped us with cancer histologies and other aspects of the site. Omar and I were awed by their intellects, helpfulness to us, and dedication they have to their profession.

Meeting a need

But let’s go back to the unmet need. Why a new website? Aren’t doctors discussing prognosis and doing their best to help patients to understand? Aren’t there many websites with cancer statistics and resources to help? Of course. However, there are two main issues that crop up. Despite research showing that 80–90% of patients want prognostic information, sometimes doctors do not provide this information. They may assume a patient doesn’t want to know. Other reasons are varied and complex but the bottom line is that prognosis information, including quantitative estimates of life expectancy or survival, may not be offered.

The other aspect of communication is patient and family understanding of information communicated. Again there is research to show that people often do not understand the words, terms, or numbers used in communication of prognosis.

What reinforced our decision about the idea of an unmet need was a simple review of Google search data. In using Google’s search volume data, we compiled a list of “<insert cancer name> survival rate” searches. The total estimate of monthly aggregate search volume is between 200,000 and 1 million searches per month within the U.S.

We’ve also created a healthcare professional version of the site to enable some advanced features for healthcare professionals who are researching survival rates. We believe than many physicians and nurses want more up-to-date survival data. While our site doesn’t incorporate data from the latest drugs or therapies, we provide a useful reference point for physicians seeking population-based data.

Better answers

In our review of current solutions when people search for cancer survival rates, we realized that most sites fell into two categories: First, they were very broad in the information supplied, providing ranges of survival rates such as “10–40%”. They didn’t provide specific estimates based upon important factors such as age, stage, grade, time since diagnosis, and histology. We have created a calculator-based model that allows a user to input this information to get a customized answer.

For example, let’s look at two cases of esophageal cancer:

  • A 50 year-old female with stage 1 esophageal adenocarcinoma cancer has a 5-year survival rate of 58%
  • A 64 year-old male with stage 2 esophageal squamous cell carcinoma cancer has a 5-year survival rate of 33%

Other sites often combine histology types or do not separate statistics by age group, sex, or grade. These factors can cause survival rates estimates to be substantially different (by anywhere from a few percent to 30–40%) when specific values are used (like above where there is a 25% difference in 5 year survival rates).

Second, sites published by hospitals are created for physician use, requiring a user to input very specific information about their condition or reading through advanced medical terminology.

While users of cancersurvivalrates.com may not know their stage, grade, or histology, we’ve created a user interface that allows the user to toggle. This allows them to see the range of possible outcomes based upon different inputs. We acknowledge that there are many other variables that affect prognosis, such as the specific gene mutation type, treatment options available, and response to those treatments. Sometimes these matter a lot in prognostication, however, sometimes they do not.

Better conversations

We hope the information and tools on our site leads to better conversations between patients, doctors, and family members. Specifically we hope to help people make more informed decisions about how to spend their time or about future plans. This could involve more in-depth conversations about treatment options and trade-offs with physicians. Perhaps using our site won’t change a thing other than a patient finally understanding their prognosis and eliminating some of the anxiety caused by uncertainty. We’re fine with that.

From a user perspective this is why we designed our site to lead into the “3 questions to ask your doctor” right below the numbers. We believe that regardless of the prognosis, the fact that a patient visits the site and then asks their physician will be a signal to the physician or an indicator that prior conversations haven’t achieved a satisfactory understanding of prognosis.

For later stage cases, we’ve taken an additional step about adding information about palliative care, an often under-utilized option that we encourage more patients and family members to explore. We’ve also provided resources for patients to create an advance directive.

Thank You

We would like to thank all of our advisors, family members, and friends for all of their huge amounts of help. In addition, our fabulous design and technical partners who were skillful and generous with their time.

Stephen Buck

About Courage Health

Courage Health is a Public Benefit Corporation that created Cancersurvivalrates.com and is 100% self-funded.