This post was first published on The ASCO Post, November 10, 2023. 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.
Allison Rosen, MS, is the director of Project Extension for Community Healthcare Outcomes (ECHO) for the American Cancer Society. She lives in Houston, Texas.
I’ve been contending with health issues since I was 12, when I was diagnosed with Crohn’s disease. As I began my early 30s, I was feeling the healthiest of my life. I was working out 5 days a week and attributed sudden weight loss and fatigue to weight training and high-intensity Zumba classes. The one concerning symptom was a feeling of food getting stuck in my digestive system every time I ate, and I began having unrelenting heartburn as well as abdominal and chest pain.
Since my Crohn’s disease diagnosis, I have become pretty good at understanding the nuances of my body. I pay attention to any unusual changes and seek medical attention if I have any doubt about my health. I knew that having Crohn’s disease put me at greater risk for colorectal cancer, and as a result, every year, I have a colonoscopy. The previous test, which I had gotten done just 12 months earlier, had found no evidence of disease. But to ease my mind and get an answer to what may be causing my symptoms, I made an appointment with my gastroenterologist.
An x-ray detected an intestinal obstruction, and my physician prescribed medication she said should clear the blockage. But still my symptoms persisted. The gastroenterologist decided to perform a colonoscopy immediately to see what was causing the intestinal problem.
A life-changing diagnosis
My gastroenterologist found a mass growing inside my colon, blocking food from moving through my intestinal tract. “There is a growth in your colon, measuring 13 centimeters,” said the physician. “I don’t think it’s cancer, but I’ll let you know for sure in a few days.”
Three days later, on June 7, 2012, my life irrevocably changed. I was diagnosed with colorectal cancer. The initial staging put the cancer at stage III. It was later downgraded to stage IIC after I received radiation therapy and chemotherapy to shrink the tumor and, finally, surgery to remove the mass.
When I got the diagnosis, I was scared about how my life was going to change. Cancer and the havoc it can wreak are all too familiar to me. In addition to being involved in cancer research, several members of my family have been diagnosed with the disease. My mother is a breast cancer survivor, and both of my grandmothers died of cancer (one of multiple myeloma and one of breast cancer).
After consulting with several oncologists, I chose the one who during our first meeting said, “Allison, you are not just a number to me. You are someone I want to make sure we do everything right, because this cancer, with your history of Crohn’s disease, is very aggressive. We want to get you on treatment right away and get this disease under control.” The tumor was growing so fast, he said, that if I hadn’t gotten the colonoscopy when I did, I would not be alive.
Knowing the seriousness of my medical situation, the fact that I was not just a number to my oncologist made all the difference to me. It was comforting to know that my age, marital status, and lifestyle would all be factored into the treatment recommendation and that there would be shared decision-making with both my oncologist and surgeon.
Making life-altering choices
The treatment plan included several rounds of radiation therapy and chemotherapy to shrink the tumor before surgery. Although I did have a conversation with my oncologist about fertility preservation before treatment started, unfortunately, because of the aggressiveness of the cancer, there wasn’t enough time to harvest and freeze my eggs. Not being able to preserve my fertility is among the greatest disappointments and challenges I’ve had to face since my cancer diagnosis.
The initial surgery to remove the tumor and colon and create a temporary ileostomy was successful. After more rounds of chemotherapy, I was told I was cancer-free. Time to celebrate, right? The truth is, it was just the opposite.
The physical toll the treatment has taken on my body is daunting and, in some instances, permanent. In addition to being unable to become pregnant, I still have cognition issues and ongoing kidney problems, and I’m prone to developing kidney stones and infections. I am also dealing with osteoporosis, which someone my age should not have to do.
Perhaps the biggest life-altering decision I had to make after my treatment was to have my temporary ostomy made permanent. Crohn’s disease and cancer had done so much damage to my colon, it was necessary to undergo several more surgeries to repair the problem, and the possibility of successfully reversing the need for an ostomy was becoming less likely. Although contemplating having a permanent ostomy was difficult, 3 considerations tipped the balance for me: my fear of a cancer recurrence, my quality of life, and my lifestyle.
I have a very active life that includes traveling the world and trying new adventures, such as skydiving and mountain climbing. Having a high-quality life was more important to me than my physical appearance, and I have no regrets about this decision. My long-term side effects from the cancer and ostomy do not stop me from living the life I want. In fact, they have inspired me to be even more adventurous.
Finding a new life purpose
The life I envisioned before cancer is very different from the life I’m living now, but it’s a small price to pay for being alive. I was sure by now I would be married and have several children, and a career in forensic science. Cancer has given me a new perspective on life. It has made me realize how precious and fragile life is. Rather than lament what I don’t have, I’m grateful for everything I do have: a wonderful family and friends, a career with the American Cancer Society, good health, and a new life purpose to help bridge the gap between the health care system and the communities it serves.
If I can save even one life by sharing my story, my experience with cancer has been worth it.
