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I’m part of the “invisible generation” of young adults with cancer

At 35 years old, I defined myself as a mortgage analyst, wife and mother. I never expected to add colon cancer survivor to that list, especially at this age. But I soon found myself part of the “invisible generation” of cancer patients — too old for pediatrics, but too young for traditional adult cancer care.

This is my story.

Cancer was the last thing on my mind.

In late spring 2017, I started noticing some changes while going to the restroom and experienced pain in my lower back and abdomen. Thinking it was related to a previous issue I had had with uterine fibroids, I scheduled an appointment with my gynecologist, but everything appeared normal.

So, I scheduled an appointment with my primary care physician, explaining my symptoms and how they seemed to me like irritable bowel syndrome (IBS). Before starting any medication for my symptoms, I was scheduled for a colonoscopy — pretty standard procedure, so I wasn’t concerned.

Results from my colonoscopy revealed I had not one, but two tumors. I was in shock. This was the last thing I was expecting.

To make sense of my sudden diagnosis, my gynecologist recommended I undergo genetic testing for Lynch Syndrome due to having a family history of the disease. Lynch syndrome, often called hereditary nonpolyposis colorectal cancer (HNPCC), is an inherited disorder that increases the risk of many types of cancer, particularly cancers of the colon (large intestine) and rectum, which are collectively referred to as colorectal cancer. I tested positive for the MLH1 genetic mutation for Lynch Syndrome. Lucky me.

My stage III colon cancer diagnosis was a shock, especially at only 35 years old — wasn’t colon cancer a disease only older people got?

My stage III colon cancer diagnosis was a shock, especially at only 35 years old — wasn’t colon cancer a disease only older people got? It wasn’t even time for me start having a yearly colonoscopy yet.

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But once I came to terms with my diagnosis, I was determined. This cancer would not stop me from living life and being here for my kids.

“Explore."

The invisible cancer generation

In December of that year, I underwent intensive surgery that consisted of a hysterectomy as well as removal and reconstruction of my colon. I spent more than six weeks in the hospital to recover and test the capabilities of my new digestive system.

The hospital ended up becoming a second home for both me and my family.

Based on my age, I was categorized as an adolescent and young adult with cancer — often referred to as AYA. At first, it sounded odd to consider myself a “young adult.” As a 35-year-old wife and mother, I’m hardly an adolescent. But on the other hand, I didn’t quite fit in with the traditional cancer patient group, which often consists of adults over 50.

This is a problem many people like me face. Stuck between pediatric cancer care and traditional adult cancer care, there’s us — the invisible cancer generation.

This is a problem many people like me face. Stuck between pediatric cancer care and traditional adult cancer care, there’s us — the invisible cancer generation. I see it like this: We’re not kids, but we still have most of our lives ahead of us. We’re not old, but we’re too old for the toys and painted cartoon murals that fill most children’s facilities.

We have financial, social, physical and emotional concerns that are unique to this time of our lives. We’re thinking about the future of our families, our careers, our educations and our relationships. Sadly, most people like me are stuck in the middle.

Related: Beating breast cancer at age 30

Finding support I didn’t know I needed

Fortunately, I found myself at the newly-renovated Fort Worth Adolescent and Young Adult Oncology Coalition Unit located in Baylor Scott & White All Saints Medical Center – Fort Worth. This is one of the few specialty centers for AYA cancer patients in the country.

It’s obvious from the moment you walk in that this wing is not like your traditional hospital.

The rooms are bright and spacious, allowing for more family to visit and stay longer. The common area has a big screen TV, WiFi, games, a pool table, a coffee bar and an inspirational message board. The colorful character and space of the wing helped me and my children feel like they weren’t even in a hospital. The environment allowed for prolonged visits and more time for me to be with my family, even if I wasn’t feeling well that day.

Having a lounge area to socialize became very important to me. Facing cancer at my age was hard. At times, it was really hard. I felt too young to be going through this, but surrounded by people who understood me was a constant reminder that I was never alone.

A big part of my cancer journey was my nurse navigator. When I had worries about my treatment, how this would affect my family, my financials or my social life, I had a listening ear and an advocate who I knew was on my side. Having that support and advice helped me stay confident and positive as I learned to adjust to my life after cancer.

I am grateful that I lucked into this wing.

I never realized how many other people were like me — young and going through cancer. It made a big difference to see that I wasn’t alone. If you’re young and facing cancer, know this: You’re not alone, either, and there are resources for you.

This special group of patients, nurses, psychologists and physicians catering to the AYA cancer patients is something I didn’t even know existed — let alone thought I would ever need — during my recovery process. To this day, I still feel like I belong with the AYA group. There are group outings and other events available for former patients to help us stay in touch and support each other in ways only we can.

Throughout this journey, I learned to just keep going. I didn’t have time to feel sorry for myself, so I just listened to my doctors. Having children, I had no choice. They had to go to school and attend activities, and their distractions kept me going. Life couldn’t stop just because I had cancer.

Related: What it’s like to be diagnosed with colon cancer at age 24

I never realized how many other people were like me — young and going through cancer. It made a big difference to see that I wasn’t alone. If you’re young and facing cancer, know this: You’re not alone, either, and there are resources for you.

And if you’re young and think you can’t possibly get cancer at this age, think again. If I hadn’t gone to the doctor about my concerns, I don’t know if I would be here today. It’s easy to feel invincible in your 20s and 30s, but please pay attention to your health. Talk to your doctor about anything out of the ordinary, especially these seven symptoms.

Don’t have a doctor? Find one today.

This blog post was contributed by Jennifer Torres, who was diagnosed with stage III colon cancer at age 35.

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I’m part of the “invisible generation” of young adults with cancer