Early Testing Could Have Changed My Colorectal Cancer Story—Don’t Ignore the Signs
Nicola is a mother and anesthetic technician who loves traveling and spending time with her dogs, cat, and 2 children. In 2020, doctors diagnosed her with colorectal cancer. By the end of 2021, she learned that her colorectal cancer had become stage 4 and had metastasized to her brain. After undergoing a craniotomy, she has been in remission for 9 months.
Interviewed by: Nikki Murphy Edited by: Chris Sanchez
Initially, Nicola experienced rectal bleeding. Doctors thought it was nothing more than hemorrhoids, but eventually, they conducted a colonoscopy. The surgeon found a 4-cm tumor and performed surgery just before Christmas, and also discovered that 4 of her lymph nodes tested positive for cancer cells. She then underwent adjuvant chemotherapy, which is treatment to keep cancer from returning.
With no significant family history of cancer, although her father also had bowel cancer, Nicola’s case involved a non-BRAF, wild-type adenocarcinoma. Her chemotherapy initially made her very sick, leading to weight loss and hospitalization. Eventually, she switched treatments and completed 5 rounds before doctors declared her NED (No Evidence of Disease) for her stage 4 colorectal cancer.
Months later, Nicola began to experience symptoms such as profound migraines and vision changes. These led to the discovery of a large brain tumor; her original cancer had metastasized to her brain. She promptly underwent a craniotomy, which was deemed successful. Afterward, she received targeted radiation therapy, which thankfully did not significantly affect her vision.
Nicola remains under high-risk monitoring. She advocates for personal vigilance and early testing, sharing that she might have pushed for a colonoscopy sooner despite her age, had she known that younger people can get colorectal cancer. Now, she focuses on being present with her family and friends, and cherishes each day with gratitude.
Name:
Nicola H.
Diagnosis:
Colorectal cancer 2020
brain cancer
Staging:
Initial stage 3 in 2020
Metastasized to her brain in 2021 (stage 4)
Initial Symptoms:
Bleeding, pain (Colorectal cancer)
Focal migraines (Brain cancer)
Treatments:
Chemotherapy (Colorectal cancer)
Radiation (Brain cancer)
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Shayla was diagnosed with metastatic colorectal cancer at 33 years old after years of experiencing unexplained digestive issues. Initially, symptoms like stomach sensitivity, exhaustion, and food intolerances were attributed to a sensitive stomach. Over time, she sought medical attention, including multiple gastroenterologist consultations but received inconclusive diagnoses. She was diagnosed with celiac disease, but despite cutting out gluten, she continued to feel unwell.
After more months of fatigue, Shayla noticed blood in her stool, which persisted for several weeks. When her husband insisted she seek medical help, a colonoscopy revealed polyps. While initially told that they weren’t cancerous, a biopsy later confirmed that one was malignant. Further tests revealed lesions in her liver and lungs, prompting additional biopsies. The lesions in her lungs were clear, but the cancer had metastasized to her liver, resulting in a stage 4 colorectal cancer diagnosis.
Her treatment plan included four rounds of chemotherapy, followed by a hepatectomy or liver resection to remove 25% of her liver. After the surgery, Shayla began her chemotherapy again, with plans for more rounds to finish her treatment. Although she initially struggled with side effects, such as hot flashes, nausea, and fatigue, her doctors adjusted her treatment plan to help her manage better. However, cold sensitivity, neuropathy, and physical weakness persisted.
Despite these challenges, Shayla remained focused on her healing and recovery, even as the emotional toll of her diagnosis began to weigh on her mental health. She shared that the isolation during recovery and the struggle with seeing her children react to her illness was particularly difficult.
Shayla advocates for others to take their symptoms seriously, stressing the rising rates of colorectal cancer in younger adults. She encourages others to seek second opinions and advocate for themselves if they’re not satisfied with their medical care. Through her experience, she has seen the importance of a strong support network and the need for proactive health care, urging others to catch cancer early to increase treatment success.
Name: Shayla L.
Age at Diagnosis:
33
Diagnosis:
Colorectal Cancer
Staging:
Stage 4
Symptoms:
Stomach sensitivity
Food intolerances
Exhaustion
Blood in stool
Treatments:
Chemotherapy
Surgery: hepatectomy (liver resection)
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Kate, a 36-year-old mother of 2 who enjoys baking, cooking, and snowboarding, shares her journey with stage 4 colon cancer diagnosis. Her path began with a bowel obstruction leading to hospitalization, followed by scans and a biopsy that confirmed cancer in July 2024. Reflecting on her symptoms—bloating, fatigue, severe cramps—she regrets attributing them to motherhood or hormonal changes and stresses the importance of addressing persistent health issues early.
Kate describes the emotional impact of her stage 4 colon cancer diagnosis as both expected and surreal. Communicating with her young children and family required straightforward, factual discussions to manage their fears and understanding. She educated her children about cancer in simple terms and reassured her family with facts from her oncologists, focusing on the hope provided by her age and health.
Treatment decisions revolved around addressing metastasis. Doctors prioritized chemotherapy over surgery to prevent further spread. Kate began chemotherapy in August 2024 and recently completed her 7th round, with promising results. Scans reveal shrinking tumors and no new metastasis, but the journey involves significant physical and emotional challenges. Side effects like fatigue, nausea, and allergic reactions require her to balance medications, while the treatment’s toll affects her parenting and overall well-being.
Despite setbacks, Kate draws strength from her children, striving to be present and hopeful for them. She acknowledges moments of mental fog and emotional numbness but believes that these effects will pass. Therapy and anti-anxiety medications help her navigate the overwhelming experience, allowing her to sleep and avoid panic attacks.
Kate’s medical team emphasizes her strong physical health and determination as assets in her fight. The instilled hope drives her forward, propelling her to focus on survival and recovery. She views hope as integral to enduring treatment and planning for the future.
Through her experience, Kate highlights the unpredictability of cancer, even for those who live healthily. She urges others to prioritize their health, advocating for awareness of symptoms and proactive conversations with doctors. Her advice to newly diagnosed individuals centers on using facts to ground themselves, staying informed, and resisting the urge to let cancer define them. By holding onto facts and hope, she believes individuals can find the strength to face their diagnosis and remain resilient.
Kate’s story underscores the value of early detection, mental resilience, and the support of loved ones. Her commitment to her children and belief in her strength reflect her unwavering fight against cancer and her determination to reclaim her life.
Name:
Kate J.
Age at Diagnosis:
35
Diagnosis:
Colon cancer
Staging:
Stage 4
Initial Symptoms:
Bowel obstruction
Bloating
Exhaustion
Severe cramps and period pain
Treatment:
Surgery
Chemotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Interviewed by: Taylor Scheib Edited by: Chris Sanchez
Monica, a 32-year-old Australian living in Croatia, shares her journey battling stage 4 metastatic colon cancer. Initially, she mistook her abdominal pain for digestive issues and stress. After multiple misdiagnoses, her condition worsened in January 2024 when her stomach swelled so badly that she was unable to stand. Emergency surgery revealed a 4-centimeter tumor that was obstructing her intestines. Further testing found that the cancer had spread to para-aortic lymph nodes.
Monica underwent chemotherapy and has been navigating treatment with resilience, even as she faced delays like that occurring due to her contracting COVID-19 before a crucial surgery. Chemotherapy reduced the size of her cancerous lymph nodes, and she is also on immunotherapy.
While the physical toll on Monica has been significant—causing her to lose hair and endure digestive issues—she remains pragmatic, and finds solace in maintaining an active lifestyle, walking her dog, and focusing on her recovery. She reflects on the emotional impact of her diagnosis, stating that she was not initially devastated. Instead, she quickly adjusted to the situation, finding humor in some of the challenging moments, such as learning to live with a temporary stoma. She acknowledges that the hardest part may come after treatment, living with the uncertainty of remission.
Monica also uses her experience to advocate for cancer awareness on TikTok, where she discusses her journey to inspire others. Her content has resonated with women, who reach out to express gratitude for her openness. Monica stresses the importance of colonoscopies and challenges the tendency of doctors to dismiss symptoms like hers as irritable bowel syndrome (IBS), especially in young women.
Despite the difficulties, Monica chooses to maintain a positive outlook. She is determined to fight the disease and rejects the notion that cancer must define or consume her life. She believes cancer should be viewed as an accessory rather than a death sentence and emphasizes the importance of staying active, both mentally and physically. Monica’s story highlights the power of community, as her friends in Croatia have rallied around her during treatment, offering support and care when her family in Australia is far away.
Name:
Monica A.
Age at Diagnosis:
31
Diagnosis:
Colon cancer
Staging:
Stage 4
Initial Symptoms:
Recurrent pain in side
Severely swollen stomach
Treatment:
Surgery (removal of tumor and cancerous lymph nodes)
Chemotherapy
Immunotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Raquel first noticed symptoms in 2019, like pencil-thin stools, pain, bloating, and blood in her stool. She then started getting full quickly after eating.
When she finally went to the doctor after developing severe pain, she was dismissed and told, “It was just anxiety.” She then ended up in the emergency room and was later diagnosed with stage 4 colorectal cancer, which had spread to her liver, ovaries, and lungs.
In sharing her story, she aims to raise awareness about rising colorectal cancer rates in young people and the importance of listening to your body.
In addition to Raquel’s narrative, The Patient Story offers a diverse collection of colorectal cancer stories. These empowering stories provide real-life experiences, valuable insights, and perspectives on symptoms, diagnosis, and treatment options for cancer.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Name: Raquel A.
Diagnosis:
Colorectal cancer
Staging:
4
Initial Symptoms:
Frequent bowel movements
Pin-thin stools
Mild red blood in stool
Treatment:
Chemotherapy: oxaliplatin, 5-FU (5-fluorouracil), and irinotecan
I feel so confident that whether I can heal from this or not, I’m going to be able to handle it well. It’ll be okay. I’ve overcome other things in life and I hope that I can be an inspiration to people who are struggling.
I’m 33 years old with terminal colorectal cancer. It has been such a huge part of my life that I have to remind myself that there are other parts outside of that.
I currently work in the tech industry and I’m very blessed to be able to do so.
In my spare time, I like reading and drawing. I’m very artistic and very recently, I’ve been posting more. I’ve been finding great connections on social media with other people who are going through the same thing as me.
I didn’t take my symptoms more seriously because they would come and go.
Pre-diagnosis
Initial Symptoms
I first started noticing symptoms in 2019. I was roommates with my best friend and she started to notice how often I was going to the bathroom. At the time, I was working in restaurant management so I figured I was probably eating too much of the food at work or eating too many processed foods.
I started changing my diet, trying to eat healthier and more protein but also using fiber supplements. I figured I wasn’t eating enough fiber and that’s one of the first things you read online about how to resolve diarrhea or bowel issues. That did help. The symptoms went away, but they would come back to plague me again.
Symptoms Worsened
In 2022, I was working as a contractor in the tech industry. I made really good friends with people on my team. One of them noticed how often I was going to the bathroom and she said, “Raquel, are you okay?” I said, “Yeah, I’m fine. Maybe it’s the dairy in my coffee. Maybe I have a gluten sensitivity.”
At the time, I wasn’t concerned and wrote myself off. I dismissed my symptoms. But knowing what I know now, I was having classic colorectal cancer symptoms.
I experienced frequent bowel movements and pin-thin stools. In addition, any kind of blood in your stool is a huge red flag. It means something is wrong. The color, whether it’s dark or mild red, pinpoints where exactly that bleed is located. Mine was mild red. I didn’t have heavy bleeding, which is why I thought there wasn’t something wrong.
But another classic sign is getting full quickly after eating and that was a huge red flag that something was wrong. That happened from 2022 until when I got diagnosed in May 2023. Every time I took a couple of bites of something, I immediately felt so bloated.
I was actively dieting before my diagnosis, but despite how healthy I was eating, I could not lose weight, which I thought was strange. My stomach was so round and hard. I would later find out that the cause of some of my bloating was ascites. When you have cancer that is as advanced as mine, especially with colorectal cancer, the tumors start secreting free fluid. I had about a gallon of fluid in my stomach that they had to drain. That immediately relieved so many symptoms I was having with eating.
I didn’t take my symptoms more seriously because they would come and go.
They’re not going to think of cancer when they see somebody who visually looks very healthy and young so I don’t necessarily blame her. At the same time, this dismissal of people who are like me is widespread because I know I’m not alone.
Symptoms Dismissed by Primary Care Doctor
It’s important to note that as a millennial—and I have statistically looked into this—half of us don’t have a primary care provider. That was the story of my 20s. I was blessed to land a permanent role in the tech industry where I had good healthcare and was able to schedule my first physical in 10 years back in May of 2023.
When you don’t go to the doctor for that long, there is a lot to talk about. I let my primary care physician know all of my symptoms, especially my bowel symptoms, and that I had severe abdominal pain somewhat recently. It wasn’t in one spot and felt very abnormal.
When I was talking to her about this, I could tell that she thought it was in my head. She scheduled me for a psychiatric appointment after my physical because she thought I had anxiety.
But now that I know so much about my disease, I know that they were classic colorectal cancer symptoms. Because I was so young, a woman, and a minority, statistically speaking, even just one of those categories is going to make you more likely to be dismissed in a medical setting and that is absolutely what I experienced.
It was maybe three weeks after that physical when my cancer was found to be completely metastatic and had spread all over. I know that she probably felt some guilt because, after my diagnosis, they sent the information to my primary care provider before I was assigned to an oncologist.
I’m sure once she saw how bad it was, she felt guilty at the same time. She’s not the only doctor who has done that, especially when you’re young. Medical doctors are taught these statistics of colorectal cancer being an older person’s disease. They’re not going to think of cancer when they see somebody who visually looks very healthy and young so I don’t necessarily blame her. At the same time, this dismissal of people who are like me is widespread because I know I’m not alone.
It wouldn’t be until I had a liver biopsy that they would find the primary source of my cancer, which was colorectal, and I wouldn’t find out until later how incredibly it had advanced.
Diagnosis
Getting the Cancer Diagnosis in the Emergency Room
I finally went to the ER. I remember that day so clearly.
I had severe abdominal pain that was migrating to my lower back and I almost fainted in my apartment. My intuition was saying that something was wrong so I went to the ER.
They did a full blood panel on me, which included the cancer markers CEA, CA 125, and CA 19. Mine were elevated. My CEA alone was in the 700s and anything above 30 is already a sign of cancer activity in your body. For mine to be that high means that my cancer was so advanced.
When I was in the ER, I felt that they took me seriously that’s why my cancer was found. The doctor knew something was wrong so she did that blood panel. I had an MRI, a CT scan, and an ultrasound. They did all those tests immediately.
The ER doctor told me that I had ovarian cancer because that’s where they found it initially. Based on the CT scan, the cancer was pretty advanced in my ovaries and my liver. It wouldn’t be until I had a liver biopsy that they would find the primary source of my cancer, which was colorectal, and I wouldn’t find out until later how incredibly it had advanced.
The metastases are in my colon, ovaries, liver, lungs, peritoneal cavity, and omentum. They found them through those tests within a week.
Everything happened so fast. I feel truly blessed that when I went to the ER, my cancer and the type of cancer was diagnosed so quickly. They ran all these tests, found my cancer, and immediately referred me to an oncologist. The next day, I was talking to an oncologist who then referred me to have a liver biopsy. A couple of days later, they found the primary source of my cancer.
Even though it’s very, very unfortunate how late my cancer was found, what an incredible experience for them to take me so seriously and find out what was going on. Kudos to the hospital that I went to. They took me very seriously.
Reaction to the Diagnosis
I don’t think I reacted like a normal person would have and that’s because I’ve had a lot of things happen in my life. I have a very calm demeanor. When things go wrong, I’m your go-to person to think logically and that’s how I processed my cancer diagnosis.
Even the doctor seemed really surprised that she said, “Raquel, you’re not even crying. I’m so sorry I’m not telling you good news.” I said, “You know what? It’s okay because no matter what happens, I’m going to get through it.”
I feel so confident that whether I can heal from this or not, I’m going to be able to handle it well. It’ll be okay. I’ve overcome other things in life and I hope that I can be an inspiration to people who are struggling. I feel like everything’s going to be okay. I told myself that even at the beginning of my diagnosis.
My liver and lung metastases aren’t responding to chemo, but the metastases in my ovaries and colon are responding moderately well. My oncologist and I are trying to see what combination could help with wherever else my cancer is.
Treatment
The treatment protocol and how they’re going to approach your diagnosis depends on your hospital. When I first got diagnosed, I was at a different hospital but for insurance purposes, I had to switch to a different one.
My treatments would have been a little bit different if I stayed with the first hospital because they wanted to start surgeries right away. They said, “You’re going to have a full hysterectomy. I’m going to be doing this in collaboration with one of our very renowned liver surgeons and we’re going to do this at the same time.”
But then when I switched to a different hospital, they told me, “We’re going to focus on chemotherapy. Let’s see how you react, shrink what we can, and then talk about surgery.” I understand the reasoning for that because they want to shrink as much as they can to lessen things going wrong during surgery or make it a little bit less risky.
Because I ended up switching hospitals, I’ve just been primarily I’ve been chemotherapy.
Being on Chemotherapy for Life
I first started with oxaliplatin. The side effects are not pleasant. It causes neuropathy. Fortunately for me, we stopped that in December. I was on it for six months until the side effects started affecting my quality of life too much.
I have switched to 5-FU (5-fluorouracil) and irinotecan. They introduced irinotecan to see if that’s going to help my liver metastases because so far, I’m having a mixed response to chemotherapy.
My liver and lung metastases aren’t responding to chemo, but the metastases in my ovaries and colon are responding moderately well. My oncologist and I are trying to see what combination could help with wherever else my cancer is.
I have chemotherapy bi-weekly and for Christmas, I pushed back my chemotherapy because I didn’t want to be sick during the holidays. My CEA, one of my cancer markers, jumped when I wasn’t strictly on my bi-weekly regimen. If I ever stopped chemotherapy, decided I didn’t want to continue, or changed my protocol at all, my cancer would jump at that opportunity to be aggressive.
I don’t have a choice as of right now. Chemotherapy is keeping me alive so I’m going to continue being on it bi-weekly. Fifty percent of people who have chemotherapy might need what’s called GRANIX shots.
The white blood cell count gets so low with chemotherapy that medications are needed to boost the white blood cell count to continue treatment. I, unfortunately, fall under that category so not only do I have my chemotherapy, but I have to have those shots to even have chemotherapy because my white blood cells get too low.
I’m very actively looking to find and get second opinions from hospitals that are willing to touch me and get some of this out because I know it would help me in the long run.
Looking for Other Opinions
As of now, they’re telling me that they don’t want to do surgery because of how incredibly advanced my cancer is. They’re saying that it might not be worth it.
However, I’ve read and seen from other people with colorectal cancer that they have better survivability with surgery because the more cancer is in your body, the more opportunities it has to spread and be aggressive.
I’m very actively looking to find and get second opinions from hospitals that are willing to touch me and get some of this out because I know it would help me in the long run. I will be traveling to MD Anderson and Memorial Sloan Kettering, hoping that they can do surgery on me, which will help extend my life. Even though I know it’s risky, I’m willing to do it because the alternative is being on chemo forever.
Getting Help & Support as a Cancer Patient
Having the support of family and friends has been such a huge help and I give so much thanks to the incredible people in my life who have helped me through this.
Some things have personally made it a little bit easier, like trying to buy foods that are pre-cut or pre-chopped. I like getting frozen oatmeal because I can just microwave it.
I’m sicker some days than others and I have found that it helps to have plastic utensils so that I’m not thinking about washing the dishes. To alleviate some of the guilt of buying disposables, I buy the biodegradable kind. You never think about how much something like that would make your life a little bit easier, but it does.
Give yourself grace and find the little things that you deserve to make your life easier.
If I had advocated for myself sooner, my cancer would have been found sooner… Listen to your intuition. You know your body more than anybody else.
Importance of Self-Advocacy
Self-advocacy has been such a big part of my cancer journey because if I had advocated for myself sooner, my cancer would have been found sooner. A lot of people who are as young as me or even younger don’t have a primary care provider.
Maybe they don’t have health insurance and I understand that there is a money barrier to getting treatment for a lot of people. That’s why I’ve been speaking to people who are younger than me and are getting diagnosed with advanced colorectal cancer because of those barriers.
One of the reasons why I started to be so outspoken about my diagnosis is to encourage people to go to the doctor. It’s never normal to have blood in your stool, even if it’s a little bit. Something’s wrong.
Unfortunately, if you’re young, a woman, or a person of color, you have to advocate for yourself so much more than people in different demographics. I hope to inspire people to get the medical help that they need for their symptoms because I was invalidating myself.
I went to my primary care provider and had my physical. I told her all of my digestive issues and bowel symptoms, and she said it was all in my head and that it was anxiety.
Other young people say in the comments on my social media, “This happened to me, too.” That’s one of the reasons why I’m trying to be so outspoken and raise awareness. I want people who have had the same experience to hear my story and say, “I need to take this seriously. Even if a medical professional says that I have nothing to worry about, I need a second opinion. I need to go to a GI specialist.” That is my goal in sharing my story. Don’t let anybody write you off. Get seen. Go to a GI specialist.
All it takes is one who will listen to you and help you. They’re out there. We just have to find them.
Words of Advice
Listen to your intuition. You know your body more than anybody else. A medical professional is diagnosing you based on generalities, but you know yourself better than anybody so if you are having these problems, you deserve to see a specialist and get a second opinion. Don’t listen to the first doctor. Get opinions from a second or a third, especially if your symptoms are persistent.
If your symptoms are persistent and aren’t going away, then something is wrong, especially if you have blood in your stool. That should never be written off. Any kind of blood in your stool is a huge red flag. Pay attention to it.
You deserve to be listened to and taken seriously in a medical setting. If the first doctor isn’t taking you seriously, all it takes is one who will listen to you and help you. They’re out there. We just have to find them.
If you have been invalidated about your bowel health or your symptoms, follow your intuition. As much as we want to completely trust that they have our best interests, that they went to medical school and they’re knowledgeable, that doesn’t mean that they aren’t sometimes wrong and don’t make mistakes or misdiagnoses.
Go out there and fight for yourself. Fight for your health. I hope everybody who hears my story feels very validated to go and seek help.
