We spoke with Cynthia Marie, an AYA Colon Cancer Survivor, about her journey from diagnosis through chemotherapy. Learn about what it’s like to be diagnosed with colon cancer in this blog, and keep an eye on our page for further posts. 

I’m genetically predisposed to cancer. Colon cancer exists on both sides of my family. My dad had surgery for a colon tumor in 2020, but luckily his tumor was benign. My mom’s sister sadly passed away from Stage IV Colorectal Cancer in 2024. My dad’s father also had colon cancer. Ever since 2018 - 2019, I’ve had anxiety related to cancer. 

Any time I would talk about having panic attacks, people would tell me that my body was experiencing a fight-or-flight response. But I could always tell that my anxiety was tied to my stomach. There was something wrong with my stomach. Any time my stomach started to hurt, I would get nauseous and couldn’t perform. I couldn’t do anything. It got to the point where I was barely leaving my house due to pain or the fear of throwing up in public. I was also scared that people would make fun of me for not eating much, which I couldn’t because of the pain. 

June 2022 marks the start of my cancer journey. I woke up with extreme stomach pain. I tried taking Tums, Mylanta, or whatever I could take to clear out my stomach. My mom had just left to take care of her sister, and I called her crying “Oh my God, I’m in so much pain!” She asked my dad to drop off some medicine for me, which made me feel better for a day or two. Then everything came back. I didn’t know what to do. 

From June until December 2022, I constantly fought stomach pain. Any time I was doing a livestream, I would sit with a pillow on my stomach with a heat pack just to try to work through the pain. I would still be almost doubled over! I wasn’t my full self at work, I was just in pain constantly. 

My primary physician tried to give me more remedies, but I had tried everything with no luck. She insisted that I was too young to test for any cancers, even though I told her that colon cancer was present on both sides of my family. I knew I had a higher likelihood than your average adult of getting colon cancer, just from my experience learning about genetics in high school biology. The doctor still insisted that I was too young for a colonoscopy, but offered a FIT test. 

This is going to get really gross really quickly, but it’s the truth!

For the FIT test, they send you home with a little bucket and brush, and you have to catch your poop before it goes into the water to avoid contamination. When I was little, I had to do this test. My dad placed Saran Wrap under the toilet seat to catch everything so I could avoid having to poo into a cup. That made things easier for me, so I used the same method as an adult. I did what I had to do and packed it all up for the lab to analyze. It was the grossest thing ever. I would have rather endured a colonoscopy than do this test, at least for the colonoscopy you can be knocked out! 

When the results of my FIT test came back, everything was completely negative. The doctor wrote me a note confirming everything was fine, no cancer. So I was back to square one, trying to figure out what was wrong with my stomach. Now, my anxiety attacks came with a side of heart palpitations. I had never experienced health drawbacks like this before, I was so frustrated. I had never struggled with panic attacks like this, I was never scared to go on stage before. My stomach problems kept me from doing the things I loved. 

Seeking further medical advice, I began tracking every single one of my symptoms. I visited a nurse practitioner who ran full diagnostics on my body. “Everything looks fine, but your blood counts are unusually low. I’m going to refer you to a hematologist.” In August 2022, I visited a blood specialist, who just gave me this look. That doctor is now my oncologist, so you can imagine the look he was giving me. The blood specialist informed me that the FIT test was only 75% accurate and wouldn’t give me the answers I needed. “I’ll sign you up for the colonoscopy. Let’s rule things out. You’re in pain, let’s do something about this.” 

The colonoscopy was the test I’d wanted all along, but I was still scared. Finally getting this test was making everything real for me. December 14th is my birthday, and I had my colonoscopy scheduled for December 29th. On Christmas Eve, family members were asking me if I was ready and excited for my colonoscopy! No, I was definitely not excited. I wanted concrete advice. All they told me was “Stay next to the bathroom, and chug the colonoscopy jug there.” I knew this was going to suck.

My Colonoscopy Experience

There are three ways to do a colonoscopy: 

* The classic big jug with the nasty lemon powder. 

* Two smaller bottles that you drink at specific times - the option I took. 

* A set of 6 - 12 pills that you take throughout the day - a new option!

With any of these options, you also have fasting. At 5 PM the day before my procedure, I stopped eating completely and started drinking. Another colonoscopy tip is to schedule your colonoscopy in the 1st morning slot available. You’re not going to sleep much the night before anyway, so you might as well get the test over with early and sleep the rest of the day. The fasting also hurts the longer you have to do it, so less fasting will make for an easier overall procedure. 

For my first bottle of prep, I knew it was supposed to come through completely clear. The color of the drink is meant to progress from bright yellow to dark yellow, the more of it you drink. Obviously, there will be some fecal matter with the liquid at first. As the day progresses, you should only see the liquid coming through in a Canary Yellow color. I learned all this information for my second colonoscopy, so I was still pretty much going in blind for this first procedure. 

Another colonoscopy tip is to pick a TV show with a lot of seasons because you’ll be running to the bathroom every five minutes. Don’t pick something that you’ll be upset about missing a portion of, just pick something mindless that can keep your attention as you keep waking up throughout the night. 

My second colonoscopy prep drink was scheduled for 2 AM. You’re supposed to take it about four or five hours before your appointment. That drink was even harder to get down, my body just wanted to reject it after what it had been through with the first bottle. I drank the majority of it, but couldn’t finish the bottle. This is where my horror story starts. 

I went to the bathroom at one point after taking my second drink, and instead of clear liquid coming out, it was blood red like the first day of a period. I screamed. Thank God I was in my parents’ house at the time. I ran to their room sobbing. My dad’s like “Calm down, it could just be hemorrhoids.” I asked him “Do hemorrhoids cover an entire toilet full of blood??” He stayed quiet after that, but reminded me not to take anything for certain until my colonoscopy was complete.

The next morning, I show up to my colonoscopy shaking like a leaf from a combination of fasting and anxiety.

I’d never been to the hospital before or been put under for a procedure. The only time I needed anything similar to this was when I had cut my foot on glass, which was sewn up with super glue. I’m terrified of needles, overall my mental sanity was hanging on by a thread.

The doctor ordered a two-for-one endoscopy and colonoscopy. They put this apparatus in your mouth so you don’t swallow and they can position the scope in, but I have horrible gag reflexes. I couldn’t relax enough for them to put the machine in, so they had to sedate me further to complete the procedure set up. Colonoscopies are usually done at a twilight level so you remember some things, but I was almost completely out. I only vaguely remember the pinch at the end from the scope being removed. 

When I woke up from my procedure, my dad was on one side, the doctor on my other, and the nurse stood at my feet. The doctor had a serious look on his face as he spoke with my dad, but I couldn’t make out anything as I came up from sedation. Once I was mostly present, the doctor stated “Everything looks beautiful except for the rather large tumor you have on the right side of your colon. We’ve sent for a biopsy, but I highly suggest that we get you in to see a surgeon quickly. This needs to go.”

My dad had undergone the same tumor removal procedure at the same hospital and recommended his surgeon to me. I asked the gastroenterologist “Do I have cancer?” He wouldn’t say anything. I look at the nurse, who is looking at me like I’m already a ghost on my deathbed. The doctor sighs and says “We can’t tell for sure yet, but I see this all the time. I know what this looks like. But this tumor isn’t remarkable or different, this is correctable.” I clung to those words as I went through my journey, hoping that any outcome for my health would be fixable.

I had viewed my colonoscopy pictures and saw what my tumor looked like. I’m probably going to ruin this food for a lot of people, but my tumor looked like a burrito dipped in BBQ sauce. That’s what my anemia was from. Previously, my hematologist told me that my anemia was just from a heavy period. He didn’t believe me when I said that I had a very light period if I had one at all due to being on birth control.

Lo and behold, this tumor had me bleeding internally. 

The FIT test didn’t detect anything because my tumor was on my ascending colon. By the time fecal matter got through my entire colon and to my rectum, there was not enough blood for the test to detect. This is why the gold standard is absolutely a colonoscopy. It’s a rough test, but it will detect things that other exams miss completely.

Since my colonoscopy occurred on December 29th, we received this news right before the end of the year. We didn’t celebrate New Year's much because of the devastating blow. The first week of January, I had a follow-up with the gastroenterologist. My medical insurance portal notified me that my test results were in, but I didn’t look at anything. My mom encouraged me to focus on having a good day at the time and then let the doctor tell me the news in person tomorrow. So I tried to put the notification from my mind.  

When I went in for my appointment, I guess the nurse assumed that I had looked at my test results before the appointment. She sits down gingerly and says “So, you have cancer…” My mom looks at me. I look at my sister. I remember the room zoning out. Everything sounded like the adults from the Peanuts cartoon “Wah wah wah wah.” It took me a good 5 - 10 minutes to even process the statement that I had cancer. Once it hit me, I started screaming and crying. My mom sternly told the nurse that we needed a minute to ourselves (she’s from New York, so you can imagine how she sounded). 

All I could do was sob. I was so angry.

I knew. I knew in my heart that I had cancer. But nobody wanted to listen to me until I got to this point, even when I went to the doctor’s office repeatedly looking for help. I was crying because I was afraid of losing my life, but I was crying even more out of anger. 

The nurse returns and apologizes for my circumstances. In my mind, I’m wondering why she’s sorry. There’s nothing she could do about my cancer diagnosis. Don’t be sorry, be happy that I’m here. Then she goes through the details of my diagnosis. The nurse somewhat misled me with our discussion, claiming I had two tumors even though the colonoscopy pictures that I had seen only showed one. She then advised me to make an appointment with my surgeon, and I left the office completely distraught. 

For two days, I sat in my parent’s bedroom. Many hours went by with me laying in bed with my mom, sobbing. I’m pretty sure I screamed into a pillow a couple of times. When she wasn’t there, I just sat in the dark room contemplating life.

Thank God I already had a therapist at the time, who I informed of my new diagnosis. She called me immediately and gave me an emergency therapy session, flipping my entire thought process. All I could think about was “What if I die? I’m not ready to die.” She encouraged me to think “What if you live? What does life after cancer look like to you? What are you going to do with your life after this?” I honestly didn’t know, so she encouraged me to start focusing my energy on life after cancer. I had a high probability of making it through this. 

With her encouragement, I started crafting who and what I wanted to be after cancer. I had to go through the fire first, but my dream of the future could help me do that. 

Keep an eye on our blog for Cynthia’s colon cancer surgery & chemotherapy stories. Are you a part of the colon cancer community? Join IHadCancer.com to connect with and support other cancer community members.

Photo courtesy of author.