Watch the video to hear Andrew’s story
“Amy's cancer journey started much earlier than that and this is the part of the story that I want everyone to hear as it speaks to the power of early detection and sharing data to improve outcomes. Which is why I invested in and am advising for Ezra, a full body screening technology capable of detecting cancer and disease in 13 organs. Ezra is changing the fight against cancer with an early and accurate look inside your body..”
My wife Amy passed away from pancreatic cancer in October 2022. It was diagnosed as Stage 4 in October 2021 after an MRI with contrast and a biopsy. The prognosis for pancreatic cancer at any stage is usually bad and unfortunately its hard to detect in its early stages. While some of the names of the chemo drugs used for adenocarcinoma have changed over the years it turns out their efficacy hasn't changed that much. Pancreatic cancer is just not a diagnosis you want to hear, at any stage, ever.
Amy's cancer journey started much earlier than that and this is the part of the story that I want everyone to hear as it speaks to the power of early detection and sharing data to improve outcomes. Which is why I invested in and am advising for Ezra, a full body screening technology capable of detecting cancer in 13 organs.
“Ezra is changing the fight against cancer with an early and accurate look inside your body."
Our son, Henry, was born in March 2003, 17 months after we got married. We tried for another a year or so later and like many couples found it harder the second time, which ultimately led to fertility treatment. During one of those cycles, pumped full of hormones, Amy was in excruciating pain and was diagnosed with a suspected twisted ovary - a common side effect of fertility treatment. The Dr sent her to the radiography department to confirm the diagnosis. The radiographer on duty did indeed confirm the twisted ovary and sent us on our way to the hospital for emergency surgery to untwist but not before she mentioned a shadow across Amy's pancreas that she did not like the look of - a completely incidental observation that required immediate follow up.
Ovary untwisted, over the coming weeks and months we set about trying to understand the shadow, consulting with experts at Massachusetts General Hospital, Cornell and NY Presbyterian Hospital. Trying for a second kid was now on ice. After many many MRIs, Cat Scans, biopsies and multiple tests it was finally concluded - not without some disagreement amongst the specialists - that Amy had an Intraductal papillary mucinous neoplasm (IPMN) which are cystic neoplasms of the pancreas that grow within the pancreatic ducts and produce mucin. Though benign tumors, IPMNs have the potential to become malignant and for that reason diagnostic criteria have been published to identify which patients will require surgical resection.
“Wow. The radiographer had incidentally uncovered what turned out to be a very serious condition that ultimately changed the course of our lives.”
At the time (this is 2007 remember) full body elective scans were not a thing and early detection of IPMNs was extremely rare, especially in a young woman in her 30s.
Amy's Dr recommended that the head of her pancreas be resected rather than complete pancreas removal to avoid the complication of early diabetes and she underwent a whipple procedure. A complex procedure that you can read about here.
After her recovery Amy rebuilt her strength and we welcomed a beautiful baby daughter Lucy into the world in December 2009. To Amy, Lucy was her miracle baby. When people wonder why our kids are so far apart, it's just a lot to explain. A lot of life happened in those 6 years and it's just a reminder that none of us really has much of an idea of the challenges everyone is dealing with all the time.
Between 2007 and 2022 Amy was screened annually for a recurrence of the IPMN and other changes in her GI. Ultimately this annual screening regime was unable to detect her pancreatic cancer at an earlier stage and it developed within the year between scans to the point where it had already metastasized. So why might you say am I believer in proactive screening if Amy's screening protocol could not save her? Each of those annual screenings were nerve racking but the peace of mind we got from knowing that nothing had changed year to year was worth it. Knowledge is power as they say.
Forward wind to today and Ezra scans have picked up many IPMNs, providing patients with the very earliest warning that they have a compromised pancreas and a chance to do something about it. The real benefit of the scans also comes when you get one every year and can begin to see any changes in what might previously have been unremarkable.
“The likely truth is that that screening for the twisted ovary, albeit not meant as an early cancer detection screening, acted as such, and most likely extended Amy's life by many years.”
When it comes to health I am a big believer that data and information about our health should be shared widely. The more data that is collected from MRIs and other data capture sources, the more chance we have to build the foundational AI models upon which early detection can thrive. Whether or not the screening turns up anything actionable, through services like Ezra you are contributing knowledge that could be helpful to someone else.
In recent weeks I completed my first Ezra scan. It was super easy with an easy sign up process and the scan took place at an MRI facility in NYC. Within a few weeks I got a detailed report in plain english - not full of medical terminology that is purposely difficult to understand - and I had a follow up call with a medical professional to discuss the results. Fortunately there was nothing suspicious that required further follow up but I feel really good knowing now that there is a detailed baseline of data that can be used to track changes over the coming year.