Fight CRC Call-On-Congress Recap<br/>

What age were you when you learned about the existence of colon cancer?

The first time I heard the words “colon polyp” and “colon cancer,” I was about 12 years old. Hazy as it is looking back now, it was after my mom had come home from a procedure that made her sleep the rest of the day. I learned that procedure was a colonoscopy, and it had saved her life.

At the time, she was just 40 years old, and back then (in the 90s) it was pretty unheard of for someone young to have the procedure, let alone get this type of cancer. At least that was the case when it came to being on TV news or in a newspaper. I had never heard of it.

What I do remember is her telling me that she had some bleeding confirmed on an at-home fecal occult blood test and that her gastroenterologist found this thing called a “colon polyp” inside of her colon, one so large that they said that had she not had a colonoscopy she would not have been alive at 50. So, I am forever grateful for colonoscopies and knowing my family history of colon polyps.

More than three decades have passed since then, and what was once a seldom talked about condition, has become something heavily impacting people the same age my mom was all those decades ago (and even younger people).

With this story forever etched in my mind, I pursued a career in public health focused on cancer prevention and education with a particular passion for shining a light on colorectal cancer in people under the age of 45 (my fellow millennials).

This March, the YMyHealth Team and I had the privilege of raising education and awareness of young-onset colorectal cancer at a whole new level and in multiple new ways.

I had the opportunity to attend the advocacy organization, Fight Colorectal Cancer’s Call-on Congress event in Washington, DC. There, I dedicated time to talking with and learning from young CRC survivors and their families, gastroenterologists, researchers, and advocates.

In reflecting on my time at Call-on Congress, I want to share the valuable insights that I came away with to put into context the significant rise in the number of colorectal cancer diagnoses in people in their 20s, 30s, and 40s, what each of us can do to give ourselves the best shot at CRC prevention, and what advocacy in the face of this tidal wave of CRC diagnoses means.

Lessons Learned

Colorectal cancer is still not as widely known as breast cancer, but we are making great strides.

While the increase in awareness of colorectal cancer has grown tremendously thanks to the efforts of Fight CRC and Colon Cancer Foundation, there are a fair number of people who still have not heard of it or think that it is something that affects only older people and men. Some colon cancer survivors who I spoke with had never heard of the condition until they were diagnosed with it.

People in their 20s, 30s, and 40s often experience very different CRC symptoms and ones that are not as well-known in comparison to people who are older.

This can make it hard for us to know that the cause of our symptoms is CRC and not something else. Symptoms people have experienced include bloating, fatigue, and abdominal pain, which women, in particular often experience already with their menstrual cycles and can be symptoms of other gastrointestinal conditions.

One CRC survivor I spoke with had repeated vomiting, which you could think was related to food poisoning or a bad virus too, but it was a result of colon cancer having developed and spread.

Do not get me wrong, people still do have rectal bleeding and blood in their stool. However, there are a lot of people who have colorectal cancer that are younger, and it does not reveal itself this way. So, they have no bleeding to tip them off that something is wrong. Also, sometimes the bleeding shows up intermittently. So, since it goes away, you might figure it’s not something to be alarmed about when it is.

People in their 20’s, 30s, and 40s get pushback even with family history.

Incredibly, even when you have a very clear family history of CRC, people can still get some pushback from doctors or others in the healthcare system when they try to do the responsible thing and get an order for a colonoscopy. I had one CRC survivor, who had CRC in two generations of his family, still get pushback from the actual endoscopy/colonoscopy center for being “too young” when he tried to schedule his screening (which ended up saving his life).

Another person who I met at Call-on Congress whose brother succumbed to CRC in his early 30s, even received pushback from her doctor when she asked for a colonoscopy while her brother was going through treatment. After advocating for herself, she was able to get that colonoscopy. It was her first screening. However, the point is that even with her brother fighting for his life, she was initially turned down only because she was under the age of 45. Needless to say, this is a major issue.

Many young people who have had CRC and are now survivors did not know other people like themselves until connecting with Fight CRC.

I spoke with countless individuals, who are CRC survivors that shared with me that they were told they were an anomaly. They were made to feel like they were one of a few young people in the whole country who had been diagnosed with CRC. Through connecting with Fight CRC and other young-onset CRC survivors they have learned this is not true, and these connections have helped improve their quality of life enormously during treatment and survivorship. “Fight CRC has become my family,” so many people shared with me.

Now, knowing other people in their same age group who have been through what they have been through and are also going through what they are in survivorship—anxiety-provoking scans, blood work, and for others, a daily routine of medications to remain cancer-free—has saved them, they told me. It’s given them much- needed strength to continue moving forward in life.

Survivorship can be a rougher road than people realize.

There is a misconception about cancer in young people in general but also with young-onset CRC, that once you complete your initial treatments and are declared having no evidence of disease you are done and life is back to exactly what it was before CRC. People forget that there are both the physical side effects and mental health aspects of cancer to recover from first.

Also, survivorship looks different for different people. For some CRC survivors whom I talked to it was a matter of regular blood work and imaging, but for others, survivorship means taking a dozen medications every day to stay cancer-free and working to maintain a healthy weight (because they are losing too much), all while balancing raising children and a full-time job. That’s why being supportive and gaining a broader understanding of what survivorship means and can be like is so important.

Success in advocacy takes years and has a lot to do with research. This type of work is critical for our health.

Advocacy work is crucial for making policy changes. In the CRC world, that change is about providing access to colonoscopies, other preventive screening coverage, and lowering the recommended age for an average-risk individual’s first colonoscopy and providing health insurance coverage for that. It is also very importantly about increasing funding for research to determine why CRC has risen in younger age groups and to develop more preventive screening options and effective treatments.

While people have differing opinions about how young a person should be when they start screening, I have learned that it is important to present a unified message about what that age is and have it backed up by data from multiple researchers to effectively communicate the message to our US representatives and get the change to happen. It also takes multiple years of strongly advocating this way for change to be a reality.

Tips and Tools

As much as the majority of us want to see change right now, there is no way to know when the recommended age for first colonoscopy for all people of average risk will be lowered and receive insurance coverage.

Until that day comes, there are still things that we have in our control to enable us to be proactive about our colorectal health. Here are the tools that we have, and I learned from our fellow millennials and Gen Z who are CRC survivors:

Know your family history of both colon polyps and colorectal cancers!

Taking the time to ask your parents and other relatives about this helps you to know if you have a higher CRC risk and if you need to start getting a colonoscopy in your 20s, 30s, or early 40s. Once you learn what your family history is, share it with your doctor. This will help him or her help you far better. It not only determines your age at first screening but also what types of screenings you are eligible for.

Also, knowing you have a family history of colon polyps or colorectal cancers can be helpful when advocating for yourself to get a colonoscopy, if anyone is giving you pushback on that.

Learn all the ways that CRC can appear.

Most people have heard that bleeding is a sign and symptom, but did you know bloating and fatigue can be too? By learning all the signs and symptoms of CRC you know what to watch out for and go to your doctor for. Here is a complete list of signs and symptoms from Fight CRC.

Normalize talking about your bowel habits.

I heard this message from several CRC survivors at Call-on Congress. Poop is still a taboo topic, and they seek to change that by making it a normal topic of conversation within your family, friends, and especially with your doctor. In my reporting through the years, I have had gastroenterologists tell me that for millennial and Gen Z-aged patients, being uncomfortable talking about what is happening with their bowels to their doctor has been a very big barrier to a proper CRC diagnosis.

Also, as part of that normalization, some CRC survivors recommend keeping tabs on your habits. Some even suggested keeping a journal of how many days of the week you have a bowel movement habit and any changes in shape or size (both key indicators if something is going on internally in the colon).

Do not take “No” for an answer!

I cannot emphasize this enough!!! Whether you have symptoms, have a family history of CRC or colon polyps, live with another gastrointestinal condition like irritable bowel syndrome that can have some symptoms like CRC, or you want to get screened for another reason, do not take “No” for an answer.

Being under the recommended age of 45 is not a reason to not be given a colonoscopy. You always know your own body best!! So, if the first doctor you go to will not write you an order, go to another one, and keep advocating for yourself and your health until you find one that will. And you will.

Advocacy is a daily and yearly job.

There is one month of each year publicly designated for CRC awareness, but CRC awareness and advocacy are important every day of every year.

In less than six years from now, there are 27, 400 people between the ages of 20-49 predicted to receive a diagnosis with CRC.

We must keep shining a very bright spotlight on these numbers, the symptoms of CRC, screening measures, patient stories of young-onset CRC, and continual advocacy work. Ultimately, our lives and our friends’ lives depend on it. Thanks to Fight CRC Ambassadors and the organization as a whole leading the way in its partnerships with CRC patients, survivors, gastroenterologists, and researchers, I can honestly say we are in the very best of hands.

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Fight CRC Call-on Congress Recap