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Meet John, a Liver Warrior

Patient Stories Jul 28, 2022 7 min read By Helio Genomics
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At Helio Genomics, we’re on a mission to save lives. With a simple, revolutionary blood test, we equip at-risk patients with an easy way to test for liver cancer, early and often.

Routine surveillance is critical for patients to catch cancer early before it spreads. That’s why we partner with physicians to help ensure patients maintain the recommended schedule for liver cancer surveillance. As an AI-driven company, our aim is to ultimately transform the paradigm of cancer testing.

We’re proud to introduce our new Patient Stories Series, where we share first-hand experiences of patients living with liver disease and the importance of routine hepatocellular carcinoma (HCC) surveillance with our HelioLiver™ test. The HelioLiver test is a novel, blood-based technique to detect specific markers in DNA that indicate a higher likelihood of HCC. It requires only a simple blood draw that can be conducted during a routine checkup, instead of needing to schedule an additional appointment. HelioLiver can help detect HCC earlier than other standard tests, allowing patients access to more curative treatment options and improved outcomes.

To kick off this series, meet John.

“The earlier you catch cancer, when it is most treatable — the better chance you have to beat it. Advocate for yourself and push for regular surveillance.”

JJohnHelioLiver patient, Nevada

I am a 70-year-old man, living in Nevada with my wife, who is severely disabled — I’m her primary caregiver. For a time, I considered myself reasonably healthy. Life was good, and I had no reason to believe I was on track for anything but a relatively stress-free retirement. It’s important to note that around 1985 I contracted hepatitis C after taking part in recreational drug use, which now that I’m older, I wish I had made some wiser choices. Despite my diagnosis, I didn’t act on it until the year 2000, and around that time I began to take my health more seriously. I went to my general practitioner and got re-tested for hepatitis C. With an updated diagnosis in hand, I went to a gastrointestinal practitioner to undergo a biopsy, which resulted in a diagnosis of Stage IV liver cirrhosis.

When I got the news, I was absolutely shocked. I didn’t feel like I was sick. At first, you could say I was in denial. I spoke to my doctor about my diagnosis and complained that I felt fine, but they told me, “you have it. It will eventually get you. You have to either cure it, or you will die.” It was a sobering reality. But with a diagnosis that felt, at the time, insurmountable, I appreciated my doctor’s honesty. Hearing the words “stage four” out loud was shocking, to say the least.

With no surface-level symptoms of cirrhosis, most people like me would assume that they are fine, and certainly would not assume that their liver is on the cusp of failure. For those who don’t know, cirrhosis is a late-stage liver disease in which healthy liver tissue is replaced with scar tissue, leaving the liver permanently damaged and at a higher risk of developing cancer. After the initial shock of my diagnosis, I knew I had to do everything in my power to take charge of my health.

My doctor prescribed Interferon, an injection treatment used to treat a variety of diseases including hepatitis C, for nearly four years — meaning 48 weeks of injections, four times in a row. The treatment was brutal, and it failed every time. Eventually I was prescribed a new treatment that helped my symptoms but still left me with the cirrhosis, which I’ll have for the rest of my life.

In my experience so far, I’ve learned a few lessons that deserve to be shared with more people. Managing your liver health is so important to your overall health. With my doctor’s guidance, I’ve committed to a number of lifestyle changes to try and combat my risk for worsening cirrhosis. Consuming alcohol in moderation, or omitting it entirely, is ideal for optimal liver function. Maintaining a regular cadence of exercise and consuming a healthy, well-balanced diet is also helpful while living with cirrhosis.

In addition to these lifestyle changes, regular surveillance for hepatocellular carcinoma (HCC) has become the new normal for me. HCC is the most common form of liver cancer, and because I have cirrhosis, I’m at increased risk for developing it — but that never really sunk in for me before.

Every six months, for years and years, I got an ultrasound to monitor my liver. I went in for my appointments regularly and rarely missed an appointment. The whole time, I didn’t really understand that they were looking for cancer until five years into regular surveillance, when it finally hit me. I know that I probably would have worried more had I realized sooner, but after a while, I finally understood. Each time I went for an ultrasound, I felt like the luck of the draw that thankfully nothing changed. My screens would come back clear, and I’d be so relieved every single time. Through my personal research I’ve learned that if you catch HCC early, you have a better chance at successfully eliminating the problem. So every time I went in for my surveillance appointment, I’d be holding my breath until they gave me the ‘all clear.’

Monitoring frequently for cancer, especially if you are at higher risk, is key for better patient outcomes. I pushed for this even before the HelioLiver test. I was asking for MRIs every three months and my doctors were hesitant given “they were already watching my liver very closely.” I always said, “No, no, let’s look at it more often.” In my opinion, if something is clearly a problem, I want to address it now, not later. I have numerous friends that are gone now because their doctors said “wait and watch.” Is it because of that? I’ll never know, but I want to make sure I do everything I can so my doctors can intervene when they need to — and if that means being a bit more assertive with my healthcare team, I’ll do what I need to advocate for myself.

Recently, my doctor told me that I was a perfect candidate for HelioLiver, a new, more sensitive test that was convenient to use during our regular appointment. So, I said, sure, why not! After reading about HelioLiver a bit more, I learned it’s pretty darn accurate. Combined with ultrasound, my doctors are going to get a much clearer picture of what’s going on, and that made me feel confident. I was also pretty happy this meant I wouldn’t have to go out of my way to see more specialists, and that HelioLiver was a pretty quick and simple blood test.

Now that I’ve gotten my HelioLiver result, I monitor more frequently. I have MRI scans every three months instead of six months. My doctors run labs more often, and I have been continuing my lifestyle changes to support my liver health. I feel like I can finally be confident in my everyday health and wellness. Being in control of my health is something I’m so grateful for.

The moral of the story is, the earlier you catch cancer, when it is most treatable — the better chance you have to beat it. Advocate for yourself and push for regular surveillance. Doctors often have their own protocols, but when it comes down to you and your own healthcare, you have to speak up like I did and seek out tools like HelioLiver because early detection can make all the difference. Talk to your doctor (maybe don’t wait quite as long as I did), because it might just save your life.

View source version on medium.com.

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