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.
“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.
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.”
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Why this data doesn’t have survival rates for brain tumors
Emily,
Thank you for your question. I wish we could have included survival rates for brain cancers in this first version. The reason why we did not is because there are many different types of brain cancers with so many different factors that affect survival. This can be true for other cancers as well. However, with brain cancer we felt the complexity required to provide rates was too high. Many sites do provide brain cancer survival rates (https://www.cancer.net/cancer-types/brain-tumor/statistics). Instead we hope to spend some additional time looking into ways to provide survival rates for brain cancer. It may take some time, but we’ve received this question from many others as well.
– Stephen, CEO Courage Health
There isn’t acute myeloid leukemia. I was diagnosed in September 2018. I was 23, but now I am 24 years old. I would like to know my 5 year survival rate.
Hi Brittany,
We couldn’t include AML because the survival rates depend so many factors – things like blood tests, imaging studies, cerebrospinal fluid examinations, and bone marrow biopsies. Unfortunately the data we get to use doesn’t have these elements for each individual so we do not offer survival rates. I’m sorry about that.
Have you tried asking your physician? Was this offered? Your physician should be able to answer your question about 5-year survival rates when you ask.
Stephen – CEO Courage Health
I am 72-year old male with pT3aNoM0 18-months post radical prostatectomy PSA=0.05. <2mm G3 surgical margin
Memorial Sloan Kettering post-RP nomogram gives me 63% chance of NO progression in 5-years and 98% chance of 15-year prostate cancer specific survival (with no further treatment). Your web page shows me having only a 71% chance of a 5-year survival. Your offering such dire survival rates when all contemporary research describes much higher survival rates is terrible.
Jerald, thank you for the feedback. If you could contact us at [email protected], we would be glad to compare the tools in more detail. We are familiar with a number of the nomograms at MSK. Great tools but as you know, a patient needs to input no fewer than 8 variables requiring detailed knowledge of their condition. It’s great that you know them. While we don’t have data on how many patients know these, according to a number of the oncologists we’ve consulted, many patients do not. Thank you, Stephen – CEO Courage Health.
My concern this tool like is that it’s based on 5-year survival rates generated by treatments available 5+ years ago. In lung cancer, the survival rates have changed dramatically since 2011 thanks to many newly-approved targeted therapies and immunotherapies. In 2011, the majority of stage IV lung cancer patients survived less than a year. In 2020, the median survival for patients on some newer therapies exceed 5 years! However, due to cut-off dates use for current5-year survival statistics, such amazing information would not be reflected this tool.
The lung cancer community is already struggling to ensure all LC patients receive appropriate biomarker testing and access to FDA-approved targeted therapies and immunotherapies. I’d hate for any patient to get discouraged or lose hope because they’re only seeing outdated lung cancer survival statistics.
Janet, This is such a good point. Sadly, this is the freshest data we have. It takes a while for cancer registries to compile and send this data into NIH. Many other sites with survival data (ASCO’s Cancer.net, ACS, NIH SEER) are using the same datasets we are. For those who haven’t been provided a prognosis, we consider our numbers a starting point for a conversation with their doctor. For some cancers, the numbers may be similar. Other cancers might have seen improvement. Thanks, Stephen – CEO Courage Health
I was stage IVB and now NED. You don’t know and shouldn’t have junk on the internet like this. Just rich people making money of cancer. Discussing! Sham on you all. American Cancer Society all ready does this.
What is the survival of a high grade serous carcinoma cancer patient after getting three chemotheraphy and immediately infection occurred. Patient age is 63.
Uttam, We suggest you discuss your question with a medical professional. Asking about prognosis and survival rates is a normal question. Many people will ask physicians for their opinion on 1, 2, and 5 year survival rates.
Desperate patients are posting here, only to be contacted by sleazy marketers, quacks and con artists. What a brilliant marketing scheme. It looks really unlikely that they are getting anything remotely resembling medial care, or their physicians are just plain mean and condescending. Thanks to the deceptive marketing and lies on sites like this sick exploited people are turning here to be exploited even more. Thanks the quacks, fraud and deceptive marketers, here, these desperate and vulnerable patients will not have their pain treated either. Even during the most intrusive and painful surgeries, they will be told that the pain is their fault. We live in Post Fact America, just look at the last 20 years of articles here.
Doctors are still blaming patients who get cancer, especially if they are minorities , women or low income. Psychologists and psychologists claimed that a persons mindset brought on cancer, it was a lie, but it did help the insurance industry to profit by denying care.
Thank the corporate media, deceptive medical marketers and religious zealots for keeping us all misinformed, congenital syphilis is now back!!!!!!
Patients data is already being sold to marketers, they do not provide this information out of the kindness of their hearts. Anyway a large percentage of the people using these sites, will have been misdiagnosed or lied to by their physicians anyway. Cancer is the most profitable disease, so postponing the diagnosis boosts revenue. This is much more likely to occur if the person with cancer is a minority, female, low income or blue collar. No agency anywhere keeps track of the number of misdiagnosis, the industries decided that might cut into profits. There is more money in treating cancer after it metastasizes, then they can sell even more rounds of chemo. Patients with insurance that does not pay well enough, can be sent for alternative medicine even though that is another scam. Medicare loses millions every year, due to the profit driven system.
My father has ca colon which has spared to liver. Doctor said its stage 3. I know it won’t be cured but any medical help so that he lives for some years. His legs are swollen. Any medical help to reduce the swellen feet
I have stage 4 bladder cancer (post cystectomy) diagnosed June 2019. Post radiation, currently on Keytruda.