From Diagnosis to Advocacy: Jack Birren's Inspiring Journey with CRC

What do you know about colon cancer? 

For some people under the age of 50, their knowledge can be scarce at best, and at worst, that colon cancer is “an old-man’s disease.” So, it does not apply to them. But what about when your old man and his old man have had colon cancer? What do you do then?

That’s exactly what happened to Jack Birren. 

As early-age onset colorectal cancer—diagnoses under age 50—are predicted to increase by more than 140% by 2030, the Wisconsin native, a chef, and culinary instructor, who was one of those diagnosed well under age 50, shares his story about how knowing your family’s medical history is a key ingredient—knowledge that saved his young life.

What is Colon Cancer?

Another part of that knowledge that Birren is on a continual mission to spread is for people to know about the colon and colon cancer in the first place.

The large intestine is the last stop on your digestive tract that actually performs digestion. It’s also the site where cells can become cancerous, leading to colorectal cancer. 

The colon is the first and longest part of the large intestine, which is why there are a lot of potential areas for cancerous growths to develop—one of many reasons why screenings are so important. 

Colon cancers develop from a mass of abnormal cells that form a growth or a certain type of colon polyp on the inner lining of your colon. While colon polyps are common and many will never become cancerous, it’s important to remember that almost all colorectal cancers start from a polyp. 

In fact, 75% of colorectal cancers start from adenomatous polyps and about 80% of all colon polyps are adenomas.

Understanding Family History and Screening

It’s why knowing your family history of colorectal cancer and colorectal polyps is critically important. 

If you have a family member who has had colorectal cancer or colorectal polyps it not only increases your risk of getting colorectal cancer, but also significantly changes the timeline for what age you should start getting a colonoscopy. 

The United States Preventive Services Taskforce recommends that for all Americans regular colorectal cancer screenings start at age 45. But for those with a family history—something that makes your risk of CRC higher—that rule does not apply. 

If you have a family history of polyps or a colorectal cancer in a first degree biological relative, your first screening should be 10 years before the youngest diagnosis in the family. First degree biological relatives are your mother, father, sister, or brother. 

Note that 25-30% of colorectal cancer patients have a family history of disease. 

Birren was one of them. He did not know much about his family medical history until his uncle (his dad’s brother) passed away from CRC at 29 years old. His uncle was diagnosed at 27 years old. Once his family began talking about their medical history, Birren learned that his grandfather also had been diagnosed with CRC before his uncle. He went on to be diagnosed with CRC a second time and died from it. Shortly after Jack’s grandfather’s death, Jack’s own father was also diagnosed with CRC.  

Given that history and a wonderful gastroenterologist who his father went to and was on top of things, it was recommended that Birren get his first colonoscopy at age 20. He did and several polyps were found. He was screened again every five years following that (per the guidelines at the time).

Jack and his family at 2024 Call on Congress in Washington, D.C.

Colon Cancer Symptoms

Equally as important as it was for Birren to know his family history of colorectal cancer was to know what the typical colon cancer symptoms were, so he could look out for them. 

Common symptoms of colon cancer can include:

• Changes in bowel habits, including diarrhea, constipation, or narrowing of the shape of stool, all that persists over a few days

• Rectal bleeding with visible red blood

• Blood in the stool (this can change your stool’s appearance from dark brown to black)

• Constantly changing bowel habits (such as feeling like you have not fully passed all of your stool during a bowel movement)

• Abdominal cramping or pain

• Fatigue and weakness

• Unintentional weight loss that is not happening for a particular reason. 

You woke up on Thanksgiving Day and experienced black tarry stool, which led you because of your family history to immediately think it was CRC, but did you have symptoms prior to this day that you were watching?

No, I did not have any other symptoms than that on that one day. 

I knew I was due for my colonoscopy and had tried to schedule it for a while but was getting the runaround for being too young. I finally had it scheduled for January 2017 to count towards that year’s insurance deductible. But then as soon as I woke up on Thanksgiving morning, I had the black tarry stool. I had zero symptoms after that and up until including when I had my colon removed in the first week of January. Almost two months and that was the only symptom I had. So, I could have easily ignored it. 

But because I knew my family history and had this life basically since age of 10 or so knowing what to look for, I knew exactly what to do. So, I called and scheduled a colonoscopy. They gave me the same thing about how I was too young, and I said ‘Hey there is black tarry stool. This is not a drill; we need to get in.’ They got me in a week and a half later.

The day after Jack's colectomy surgery

Colorectal Cancer Diagnosis Process

The gold-standard test for diagnosing CRC is a diagnostic colonoscopy. During the test, your gastroenterologist uses a thin, flexible tube called a colonoscope, with a video camera on the end to look at the entire colon and rectum. 

Special instruments can be passed through the colonoscope to biopsy or remove any suspicious-looking areas. These biopsies are then placed under a microscope and examined by a pathologist, who will determine if there are any cancerous cells. 

Other tests used in the CRC diagnosis process include the at-home fecal occult blood test done at home, which requires you to collect 1 to 3 samples of stool from bowel movements. These can detect blood that is not visible to the naked eye. If blood is found, then you will be sent for a colonoscopy. 

How did your diagnosis unfold? What was your official diagnosis?

I was officially diagnosed with Stage III Colon Cancer at 39 years old.

My doctor told me after my colonoscopy that they had found a tumor and sent it out for testing. He said that his expertise told him that it was cancer, but he sent it out for testing to make sure. He wanted to get a CT scan and then told me the drill of what would happen next. Because of my age and what we know about genetic testing, they wanted to test me for this thing called Lynch Syndrome. There is a different protocol of treatment if you have that. And that would be removing your entire colon and connecting your small intestine to your rectum. You wouldn’t need a bag at all. I did end up being diagnosed with Lynch Syndrome, MLH-1, so I had that treatment. 

The CRC Treatment Journey

Treatment for CRC is dependent on the cancer’s stage at diagnosis. 

Stage 0 and I Colon Cancer involve surgery, but Stage I Rectal Cancer can involve chemotherapy as well, if the cancer has gone through the outer layer of the rectum or there are cancer cells in the nearby lymph nodes. 

Stage II Colon Cancer is commonly treated with a combination of surgery that removes the section of the colon with the tumor and surrounding tissue. While chemotherapy can be used at this stage, it is not common and is controversial. However, rectal cancer that is Stage II is commonly treatment with chemotherapy as well as surgery. So, is Stage III Rectal Cancer.

Millennials, who over the past decade or more have found themselves being diagnosed with early-age onset CRC, have often been diagnosed at Stage III and IV. Those with Stage III Colon Cancer have commonly been treated with a combination of surgery, chemotherapy, a colostomy, and sometimes radiation. For Stage III Rectal Cancer though, the recommended treatment is surgery, chemotherapy, and chemoradiation (combined chemotherapy and radiation before or after surgery).

While those diagnosed at Stage IV Colon or Rectal Cancer, have been offered different types of surgeries, chemotherapy and radiation combinations have often been recommended to shrink tumors. Stage IV patients can have additional treatments that include targeted therapies and immunotherapies (medications that use a person’s own immune system to fight the cancer). 

For more-detailed information on CRC treatment by stage, visit Fight CRC’s treatment page.

I know you had surgery and seven rounds of chemo. Tell me a little bit about the type of surgery you had to have and were you offered different treatment options at the time or was there one clear plan?

After getting a second opinion, I ended up going with a doctor that was phenomenal.  Since I tested positive for Lynch Syndrome, again, they took my entire colon out and then just connected my small intestine to my rectum. It was only a few days in the hospital and honestly not that awful. Then, I did seven rounds of chemo, and my CT scan showed no evidence of disease, and we stopped the chemo after that.

Jack on the day after his colectomy surgery with his son.

How has your surgery and chemo impacted your life?

Being a culinary instructor, I was very fortunate that I was able to do my surgery in January while we were on winter break. And I was able to be back within the three-week break. So, I missed two days of work from January to May during my whole entire cancer journey. And, that was to get my port put in and to be removed. 

The hardest part was neuropathy with the chemo that I had. It causes really bad neuropathy and cold sensitivity. So, going into the freezer at work and doing other things, and even just at home. Living in Wisconsin, getting chemo in the winter, I always had to wear a mask before masks were cool, and scarfs everything just because if you were to breathe in the cold the air, it would feel like glass shards coming down your throat. And so, it was tough. 

Everyone is different, but I stayed busy. I would wake up every morning and go to the gym with my chemo box on and walk through my entire journey. I would laugh and smile, but there were days that I would just not want to do anything. But I would think in the back of my head, ‘What would other people think who were looking to me for hope if I just laid in bed today, instead of going to work and posting my usual selfie at the gym?”

At that time my son was 10 years old and knowing that this is genetic, and there’s a possibility that one day he could have it, I wanted to live my life as if he were to ever get this that he had that example of just be strong and move on.

Life After Treatment

After his treatment was successful and showed no evidence of disease, Birren joined the more than 1.5 million colorectal cancer survivors living in the United States.

What type of treatments or follow-up have you had to do since been declared cancer-free?

So, after the seven rounds of chemo, I was put on maintenance therapy, which meant having bloodwork every three months and having a CT scan every six months. After doing that for one year and showing no evidence of disease still, we continued on that for three months and then went to every six months. After that when we were going on two full years out, we moved to a CT scan to once a year.

Now that I am past the first six or seven years, we are finally out of maintenance and eliminated the technology, knocking out the CT scans altogether. So, we’ll just continue to do blood work every six months testing for the cancer DNA in the blood, and if something comes up, I’ll go ahead and do the testing.

Jack staying positive during treatment.

Advocacy and Awareness

Fight Colorectal Cancer (aka Fight CRC) is “the leading patient-empowerment and advocacy organization in the United States.” It provides education, awareness, and support to the public, CRC patients and families, while simultaneously staying cutting-edge in the advocacy world to accomplish policy change at the state and federal level. 

Fight CRC’s Ambassadors take their personal, lived healthcare experiences with CRC and their knowledge to the masses around the country—a crucial service for millennials and Gen Z, given how early-age onset CRC cases have skyrocketed. Birren is proud to be one of them.

After transitioning into post-treatment life, what made you decide to become an Ambassador for Fight CRC?

I think it just rolls into my education aspect of it. I attended my first Call-On Congress, and I was sold. I saw people walking around with the title “Ambassador,” and I wanted to know more. I wanted to see what kind of change I could bring, and I love it. With Fight CRC, there is such an impact that we play on the colorectal cancer world and being able to help change the law. The organization is fantastic and there are opportunities to do some of everything. 

I love to do the education aspect of it and help educate people on the symptoms, family history, and what to look for. And that’s the big question about it: What are some symptoms? What do you look for? 

And when you do see some of these symptoms, what are those steps for advocating? Especially in younger ages, it’s not just advocating, but advocating for yourself and really putting pressure on the doctors to say, ‘I don’t care what your stuff is saying. This is my money. This is my insurance. This is what I want. Let’s figure this out. Let’s get it done! Something is wrong.”

Jack advocating on Capital Hill.

Conclusion

Now almost seven years into CRC survivorship, Birren says the way that being diagnosed with cancer at 39 years old changed his perspective on life has to do with his father’s concept called, “the dash.”

Growing up his father told him: “It doesn’t really matter what happens from point A to point B; it’s what happens in the middle of that journey to get there.” 

What this meant for his cancer journey was handling this challenging time in his life in a way that others would look up to and gain strength from him to apply in facing their own challenges. That’s what mattered most to him and still does as a Fight CRC Ambassador.

“Unfortunately, it has taken the numbers of early-age onset colorectal cancer to continue to grow for the medical world to start realizing that maybe we should start doing this stuff earlier. But if that’s what it takes, unfortunately, that’s what has to happen. I’ll take the sacrifice of getting diagnosed at 39 to have me be part of one of those numbers to start to create change,” Birren said. “I was fortunate enough to get the right doctor to still be here. So, with him taking that time, I feel like I need to take the time to educate people.”

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