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Talking about cancer is hard. Talking about your chances of surviving cancer is even harder.

Now one of the entrepreneurs behind the drug-pricing information site GoodRx wants to make conversations about cancer easier with a new site called CancerSurvivalRates.com. Launched this month, its mission is to make information about cancer prognoses more accessible to patients and families. The idea is to improve on what people can find on the internet or even sometimes in their doctors’ offices, co-founder and drug supply chain veteran Stephen Buck said.

Oncologists may be leery of their patients’ relying on the web for cancer survival rates or estimates of how long a patient might live, particularly given how many factors come into play for any individual. But Buck, along with oncologists and other experts who have served as  advisers on the project, say such information can be the basis for a deeper discussion with clinicians about what the future might hold.

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“We designed this site to be extremely simple for people to understand. People aren’t versed in odds and survival rates. We wanted to say out of 10 people, how many are alive after one, two, or five years,” Buck said. “We want this to be a conversation starter, for someone to take this information and ask their physician, what do you think about my prognosis?”

The tool, which is free, asks users to enter information about their age and gender, then more details about their cancer diagnosis. Stage, grade, time since diagnosis, and histology can be entered to compute how many people survive for up to five years. The answers are based on public data gathered by the National Cancer Institute. 

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The need for clear and simple information stems in part from the shock patients and families may feel when they first hear the word “cancer,” Buck and his team said. Reeling from the diagnosis, patients may not be able to take in more than that one word. But once they get home, they — or their loved ones — may turn to Google to find out more about a particular cancer, treatments for it, and in the case of advanced or more serious cancers, how much time they may have.

“For patients and families, it can be pretty hard to track down accurate information about prognosis. It can get pretty technical pretty quickly,” said Dr. Shoshana Ungerleider, an internist at Sutter Health in California who focuses on end-of-life care. She also served as an adviser on the project. “What I love about the product Stephen has created is patients can really be proactive if they want and say, well, I have just been diagnosed with stage 4 cancer. I do want to know what the future may hold for me.”

That’s where the conversation with an oncologist ideally comes in, proponents of the site say.

Dr. Jennifer Temel, a thoracic oncologist at Massachusetts General Hospital who also studies doctor-patient communication, said she worries in general about online tools that provide prognoses.

She said she and her team use the first few visits with patients to help them and their families understand the diagnosis, then later talk about treatments and their goals. She might explain that chemotherapy, for example, could help some patients live longer but won’t cure their cancer.

“As a thoracic oncologist, many of my patients have a prognosis of months or a year and that is not something you want to find out on the internet without communication with a clinician, support from your oncology clinician, maybe support from social work and palliative care,” she said, speaking generally about websites offering information on cancer survival but not CancerSurvivalRates.com in particular.

“I worry that some of those objective tools don’t take into account some of those things about a patient’s health status or well-being,” she said. “From my perspective, more importantly, we just want to be there for our patients and families when they are getting information like this.”

Dr. Jim Murphy, a radiation oncologist at the University of California, San Diego, who is an adviser to the site, said any individual case will be nuanced, but the tool can give patients a big-picture view of their cancer, allowing them to later discuss issues with their doctors.

“I think prognosis can be difficult for patients to hear and for physicians to effectively relay this information,” Murphy said.  

Broaching survival estimates can be challenging for doctors, too. Ungerleider cites a study from 2016 showing that only 29% of doctors had received training in how to discuss end-of-life care with their Medicare patients.

Making information easier to find and understand falls into Buck’s technology wheelhouse from his time at GoodRx. 

“What you learn after working in Silicon Valley for a long time is you win on the interface and the user experience,” he said. “There are other sites out there that have survival information. They’re difficult to use. Even the tools on the government website, they have a lot of data. But you have to be somewhat of a sophisticated user to manipulate the data.”

CancerSurvivalRates.com is hosted by Courage Health, a public benefit corporation, the legal term for an entity whose mission is to serve the public interest. Buck and his co-founder, technology expert Omar Mehmood, funded the  2 1/2-year-old project out of their own pockets.  

Buck is committed to keeping the tool free for patients and health care professionals, while also considering a variety of income sources: sponsorships, inclusion in electronic medical records, adoption as a tool in training programs in communications. 

And it could be sold. To be honest, we’d love to sell the company and site to Google,” he said. “It would be ideal to maintain as a free public resource that comes up when someone searches on Google.”

  • I was diagnosed with breast cancer Stage2A in March 2012. Markers were ER+PR+HER2+. Treatment included Herceptin for 12 months with and without Paclitaxel. Continued only with Arimedex.
    In July2015 mets in bones and skull were detected. Had Radiation and Chemo followed by Perjeta, Herceptin, Abraxine. This was discontinued in September 2017. Only Tamoxifen was continued. NED since April2017.
    Tamoxifen was also stopped in Sep2019 on account of UTI.
    Now only taking Xgeva120mg once in 3 months.
    For the last 2 years started having balance and gait problems progressively increasing, Parkinsonian symptoms also showing up.
    What is the likely prognosis.

    • Vatsala, you should ask your physician. Asking a physician “What do you think the survival rate is for 1, 2, and 5 years” is normal question to ask.

  • I don’t want to know the DEATH rate. I want to know the LIFE rate! Telling me how many people survived 5 years is the death rate. Tell me how many years everyone else LIVES to.

  • I have stage two brain cancer a slow growing glioma which can change at anytime. Had surgery march 22 2018.

  • I HAVE HEPATOCELLULAR CARCINOMA THAT METASTIC. IT WENT TO MY LYMPH NODES OUTSIDE OF MY LIVER . MY ALPHA-FETA PROTIEN LEVEL WAS 7000 AND I STARTED TAKING LENVIMA AND NOW MY LEVELS DROPPED TO 4. SO I DON’T KNOW WHAT TO EXPECT NEXT BUT THE DRUG COMPANY THAT MAKES LENVIMA WAS EXTREMELY HAPPY FOR ME. I WAS FORMALLY A PATIENT AT MASS GENERAL CANCER CENTER AND AT THERE TRANSPLANT CENTER WERE I MADE IT TO NUMBER 4 ON THE LIST BEFORE MY LIVER CANCER METASTASIZED. SO THAT’S WERE I STAND RIGHT NOW.

  • Was diagnosed In March of 2018 with stage 4 liver cancer which spread to lymph nodes and lung . Went on Optivo 6/2018 still going strong feel great no side effects . Dr. Kalyan and Dr. Levensky at Northwestern Hospital are awesome. Good Luck everyone keep the faith !

  • Sounds promising.
    After my cancer treatment I was told I was cured.
    But after extensive research of peer reviewed online journals discovered I only had a 50% chance of making 5 years.
    Reliable information is do hard to find.
    I then called my surgeon in panic and he confirmed this. Why didn’t he explain it in the first place? I wonder?
    Best wishes to all those effected by cancer.

  • I can’t access the website at all because they don’t support the security protocols on my computer. Is it really necessary to lock down the security so hard? Google doesn’t, and I use their site every day. Amazon doesn’t, and I can still browse products there. Of course, Google and Amazon can afford to hire the best web designers in the world, and they care about not leaving any potential customers behind. Statnews is an https site, and I have no problem with their security protocols at all except when they link to Boston Globe articles.

  • My husband has stage three pancreatic cancer and has to have 18 treatments he’s finished 7 and stays dehydrated and loses weight not above 100. Stays in stomach pain. Cancer is stable but its wrapped around a main artery going to liver. Can it spread quickly if he skips treatments to often. Can he get blood clots.he has blockages in both legs.

  • I took this for a test drive and found a big problem within minutes. I looked under cancer of the oropharynx/tonsil, and was surprised to see that no distinction was made for those who’s cancers are either HPV positive or HPV negative. These really are two separate diseases, and the survival curves are very different. Those who’s cancers are HPV positive have a much higher chance of surviving for five years following diagnosis than those who are negative. With the details mattering very much in cancer diagnosis, such as mutational status, co-morbidities, etc., I question the value of this website.

    • Stewart,

      You are absolutely correct that HPV status is an important element in determining prognosis in oropharynx/tonsil cancer cases. The reason the site does not have the HPV status as an option is that the SEER data provided by the National Institute of Health did not contain HPV status until 2010. Even after inclusion, it was not fully populated. Thus NIH/NCI advised that it should not be included 5-year survival models. At some point in the upcoming years, the SEER data will have HPV status recorded correctly for all cases. At that time we will add this variable into appropriate models. As you might suspect, mutations are a complex topic not captured in SEER data either. It is our intention that people use the population data to ask their doctor what they think. Many people are not provided any prognostic information so for them, this data is a starting point to help ask their doctor about their case. I would also point out that ASCO (cancer.net) says that 5yr survival rates for oral or oropharyngeal cancer are 65% and early stages at 84%. Our site provides survival rates in a similar range but adds the elements of sex, age, time since diagnosis – giving more specific survival rates for different combinations of these inputs.

      Feel free to email me at [email protected] with any other questions or feedback.

      https://seer.cancer.gov/seerstat/databases/hpv/index.html

      Thank you,
      Stephen Buck – Courage Health

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