How I Navigated the Challenges of 2 Colorectal Cancer Diagnoses As a Teen and Young Adult

January 6, 2022
Danielle Ripley-Burgess, as told to Jo Cavallo

This post was first published on The ASCO Post, August 10, 2021. It has been edited for content. The ASCO Post, in partnership with the American Society of Clinical Oncology (ASCO), communicates news of evidence-based multidisciplinary cancer care to a broad audience of oncology professionals and ASCO members.

Ms. Ripley-Burgess lives in Kansas City, Missouri. She is the chief storyteller at Fight Colorectal Cancer and the author of Blush: How I Barely Survived 17.

I first noticed blood in my stool when I was in the 8th grade. My mom and I did an internet search and were relieved to find that the cause was most likely nothing more serious than hemorrhoids, so I put the problem out of my mind. I played volleyball and had an active social life, and the likelihood of having a serious illness never entered my mind. But once I started high school, the bleeding became more frequent; there was more of it in the toilet and on the toilet tissue, and it began to change color from bright to dark red to black.

When I look back on it now, I realize the fatigue I felt and the gradual weight gain I was experiencing were probably other signs of something much more serious than hemorrhoids, but at the time, I blamed them on my busy high school schedule.

Finally, I couldn’t ignore the symptoms any longer, and my parents arranged for an appointment with a gastroenterologist who scheduled a colonoscopy. I had no idea what a colonoscopy was or why it was done. I had been taught about the large and small intestines in school, but I wasn’t familiar with the terms “colon” and “colorectal cancer” or that colorectal cancer was a disease that could threaten my life.

After I awoke from the procedure, my parents said we would have the test results in a few days. Even after they got the call with the news that I had a large malignant tumor in my colon that would need to be removed, I still didn’t fully understand what I was facing. I just knew it wasn’t good.

Surgery, chemotherapy, and radiation therapy

After the surgery, we were told I had stage III colorectal cancer. I was 17. More than feeling frightened that this cancer could take my life, I remember being annoyed about having to leave school and being apart from my friends. I didn’t want to talk about cancer or have people looking at me and touching my body.

After the surgery, I was treated aggressively with 6 months of chemotherapy and, because the tumor was located within the 10-centimeter range of where the colon and rectum meet, months-long radiation therapy. To help protect my ovaries during radiation therapy, I had ovarian suspension surgery, which is when the ovaries are temporarily attached to the abdominal wall. Although the procedure enabled me to maintain normal hormonal function, it also rendered me infertile, which has been harder for me to accept than having cancer.

Although the treatment was brutal, it was successful in keeping me cancer-free for 8 years.

Accepting cancer

My second diagnosis of colorectal cancer when I was 25 hit me harder than my first diagnosis. Although my oncologist assured me this cancer was not a recurrence of the first one and it was caught at stage I and easily cured after removal of a malignant polyp, the second bout of colorectal cancer was mentally more difficult to accept. I could deal with cancer once, but acknowledging I might never be rid of cancer was extremely challenging, and it shook my strong faith.

Thirteen years after my first diagnosis, I was found to have Lynch syndrome, even though genetic tests have failed to find a traceable hereditary link or risk factors for the development of my 2 cancers. As a precaution, I have also undergone a prophylactic hysterectomy to prevent endometrial and ovarian cancers and now have a colonoscopy screening every year.

Living with the collateral damage from cancer

I’ve now lived longer with cancer than without it, and there isn’t an area of my life that hasn’t been influenced by the disease, including my marriage, family, and career. I met my husband, Mike, while in high school, and he has been my caretaker, best friend, and hero ever since. Ten years ago, Mike and I adopted our daughter, Mae. Although I still mourn the loss of not being able to bear a biological child, I wouldn’t trade the path we’ve chosen for anything.

When I was diagnosed with advanced cancer at 17, I didn’t understand the gravity of the situation or the long-term physical and emotional ramifications of cancer and its treatment. In a way, the adage “ignorance is bliss” served me well. But when I was 25, I finally had to confront all my fears and was grateful to find a cancer community for young adults to help me through those difficult times.

I was able to tell my story through a project on The Colon Club, and the experience was so liberating and inspiring that I’ve dedicated my life to patient advocacy. I now work with Fight Colorectal Cancer to share patient stories and raise awareness of early-onset colorectal cancer and funds to support survivors and life-saving research.

Counseling helped me heal

Having cancer at such a young age traumatized me in ways I could not have imagined. I hid my symptoms of colorectal cancer for many years because I was embarrassed and too afraid to talk about them. Then I had to undergo invasive diagnostic procedures and surgeries and get touched by numerous medical professionals in places I never wanted to be touched. I felt so physically and emotionally exposed that I needed trauma counseling to help me put words to what I was feeling and lead me onto a path to emotionally heal.

Having colorectal cancer or any cancer during adolescence can feel like an assault. It’s important for oncologists and other medical professionals treating children and teenagers with cancer to carefully explain what happens during a physical examination, ask for permission to proceed, and offer options if possible. Cancer is not a disease that just affects the physical body. It is also an emotional and spiritual disease, so oncologists need to treat the whole patient and be ready to offer referrals for mental health, infertility, chaplaincy counseling, and other services as needed.

Triumphing after cancer

Despite the lingering side effects from my cancer treatment, including low anterior resection syndrome, which causes numerous bowel problems and anal fissures, and fatigue, I live a relatively normal and healthy life. When I look back over the past 2 decades, I have no regrets. I’ve made space to grieve my illness and process the pain and suffering, which has allowed me to practice gratitude. I see all the amazing opportunities that have come my way because of cancer. My goal now is to keep sharing my story with the hope that it will help others facing a life-threatening cancer. 

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