Diagnosed with… Butt Cancer?

Diagnosed with Stage IIIB Rectal Cancer at the ripe age of 28.

It all started with corn. I loved corn. Popped, steamed, creamed, you name it. The reason this sticks out to me so much is because I, famously, had 0 food allergies or intolerances up until I was about 27 and a half. Other people I knew couldn’t handle dairy or gluten or this, that, or the other but I prided myself on having a good digestive tract. This also included no issues going to the bathroom. I was a 1-2 times/day, mainly morning, pooper. I rarely had any issues aside from the occasional stomach flu, bug, or hungover tummy troubles we’ve all had. So this is why it sticks out to me and was so random to me that I had some popcorn my stomach was in absolute knots later in the evening. I’m talking full on cramping, squirming-like feelings that would not let up. This didn’t start happening with other foods, it was just whenever I had any type of corn I would be down for the count a few hours later. Not that big of a deal, right? Corn isn’t in everything, it’s pretty easy to avoid honestly.

Fast forward a few months and I start noticing some blood when I wipe. Not that big of a deal. WRONG. Very wrong. This would be the very first sign that I would try to sweep under the rug because who wants to face an issue like that when you’re 27 years old? A few weeks go by and I start feeling constipated. Like I’d have an intense urge to go but when I’d sit on the toilet nothing would happen. I chalked it up to being dehydrated, we had just moved and went on a trip so I thought maybe I’m just thrown off from the stress and need to drink more water. Queue the pain. It is so amazing how the human body will give you all sorts of signs something is wrong, looking back I am astounded at the ways my body was trying to communicate that there was something going on. I started getting this, the only way I can describe it as, surging pain in my… well, my rectum. I would feel a white knuckle, eyes roll to the back of your head, almost like I could black out right then and there kind of pain when I would sit down to go to the bathroom.

So I did what any 27 year old girl would do, I called my mom. I told her what had been happening and she immediately brought me to the ER. This was in beginning of September 2023. I had never been to the ER before. I hadn’t even ever gotten my blood drawn before this day. So after they take my blood, run their tests, and ask all sorts of questions, they gave me a diagnosis. Hemorrhoids. I. Was. Devastated. I mean I actually started crying. I had never been given this type of diagnosis before. Up until this point I had only been “diagnosed” with the flu, strep throat, one time I had bronchitis I guess, but never in my 27 years had I gotten, what felt like, a life-long diagnosis. Hemorroids… my life was over. I felt so ashamed and embarrassed, like I had done something wrong to my body and now I had this grudge being held against me. Well any sensible person might know that hemorrhoids are very common and completely treatable. There are so many remedies and they can go away on their own. The doctor had decided against ordering an MRI, she said I was so young and she didn’t want to give me any unnecessary scans in my abdomen, especially since I hadn’t had children yet. Sometimes I look back on this time and think how different things would have gone if she just ordered the MRI. If instead of being diagnosed with hemorrhoids they told me I had a tumor the size of two large eggs sitting in my abdomen stemming from the top of my rectum.

So what you might not know is that when you go to the ER they tell you to schedule a follow-up visit with your primary care physician. I really enjoy my doctor, Dr. L. I’ve been going to her since I was about 15 and I never had a bad interaction with her. But also, I never had a real reason to see her other than to tell her I was doing just fine. Every physical was so uneventful, it was mainly a height/weight check in, she’d approve more birth control, and I’d be on my way. However, after my ER trip I did notice that I was getting so exhausted by the end of each day. To the point where I couldn’t even keep myself upright during dinner, I’d end up slumped over at the table or immediately going to lay out on the couch right after eating. It was a feeling of tiredness I had never experienced before. I had gotten a new job several months prior to this point and things were starting to pick up so I half blamed it on that, but I wasn’t working an exorbitant amount of hours by any means.

During my appointment, which was in October 2023, I told my doctor about the ER visit and what precipitated it. I also tell her about my exhaustion at the end of the day and how I just feel off. She asks me all sorts of questions trying to pin point when this started and what my exact symptoms are. She also asks about family history. I tell her my dad’s mom died of colon cancer at 51, diagnosed at 48. This is when she says she’s going to put in a referral to get a colonoscopy. She says she wants to be cautious and she touches my knee and says, “I really don’t think it’s cancer”.

Fast forward a few weeks because I was a little stunned that I, at 27, was meant to get a colonoscopy. Wasn’t that for 60 year olds? Turns out the age was lowered to 45 due to the increasing cases of colorectal cancers in younger people, but I didn’t know about any of that yet. So when I finally call and make the appointment they told me it would probably be a few months before I could get in. I was slightly relieved, kicked the can a little further down the line, but then they say there was a cancellation and I can come in Monday morning if I’m available, it was Friday. I booked it right away. November 20th, 2023 I’d be getting my first ever colonoscopy.

The colonoscopy itself wasn’t all that eventful. I had a great nurse that helped set me up, they gave me some propofol, and I was out. It was the aftermath that was confusing. I woke up from my drug induced nap to the doctor saying, “Who has polyps in your family? Your mom or dad?”. He went on to say he removed a small polyp with no issue but there was a concerning area that he biopsied. He then told me, and I’m paraphrasing, “make sure you’re around someone when you get the results back. I was alone when I found out I had cancer". Again, I’m half awake just being woken up from this procedure so I didn’t really know what to think of this comment. I proceeded to go to Taco Bell and get a crunch wrap supreme, you know, to get myself into a state to process what just happened.

When I finally got my results back they did very little to calm my fears. “High grade dysplasia” were the words. This got me a consult with the colorectal surgery department immediately. I met with the surgeon the day after my 28th birthday and he did actually calm my fears quite a bit. He really didn’t think surgery was going to be needed, he felt like based on the notes that maybe a different doctor would be able to remove this “high grade dysplasia” with another procedure called flex sigmoidoscopy. I ended up having two flex sigs before I was just referred to get an MRI.

I got the MRI at the beginning of January 2024 and waited to hear back. Something that I think is so silly is that when you get test results back it goes to the doctor and the patient at the exact same time. So when I got the results notification I tried my best to just wait for the phone call. That lasted about an hour or so before I caved and just looked at it myself. Now, I’m not a doctor so a lot of it didn’t compute with me. However, I did see the word “tumor” over and over. I thought maybe the high grade dysplasia area is medically considered a tumor? I was just trying to justify this scary word. I reached out to my doctor and said I’d love a call as soon as possible. I did get a call. At 5:27PM on January 18th, 2024. It lasted 16 minutes. On this call I was told it was very likely I had cancer (remember they still didn’t have a tissue sample that confirmed it) and I would need to undergo chemotherapy, radiation, and a surgery. I was then told this would affect my ability to carry my own child.

It wouldn’t be for a few weeks until I could get in for an appointment with Mayo Clinic to get an endoscopic ultrasound to get a tissue diagnosis of cancer cells in the tumor. However, it was described to me that there was no way it wouldn’t be cancer. The tumor started at the very top of my rectum/start of my sigmoid colon and instead of growing into that, for lack of a better word, tubing, it grew through the muscle tissue outward into my abdomen cavity. Normal cells are not able to grow through muscle tissue, it had to be cancer, and lo and behold, it was.

I feel incredibly lucky. I was able to get my diagnosis because these doctors listened to me. Especially my primary doctor, the one I saw for 12+ years, she could see I was in pain and needed help. She heard me when I told her I didn’t feel right and she did everything she could to help me get the answers I needed. I know this isn’t the case for everyone and my heart breaks for those who went through extra months or even years of pain because they weren’t listened to or taken seriously. We must advocate for ourselves. We know our bodies best and we need to speak up for ourselves when we sense something is wrong.