Lillian Abreu: Learning about follow-up treatment as a survivor

Lillian Abreu was thirty years old and five months pregnant when she found out she had stage I colon cancer. Thankfully, she was able to immediately undergo a right hemicolectomy without further complication to her or her baby. 

However, Lillian’s story doesn’t stop there. Six years went by before she discovered she needed any follow-up treatment or testing. 

Fortunately, Lillian has had no evidence of disease since 2008 and now receives routine check-ups as a colorectal cancer (CRC) survivor. Her experiences remind us of the importance of ongoing oncology care, even long after one has “rung the bell.” 

Lillian’s “Miracle Baby”

Lillian didn’t think she could get pregnant after trying for more than five years. She had her first colonoscopy completed in 2004 after experiencing ongoing GI issues including blood in her stool and weight loss. At the time, a polyp was found but was not removed. 

“I call her my ‘miracle baby,’” Lillian said. “If it wasn’t for her, I probably would have just ignored these ongoing symptoms and kept on going. However, I was motivated to figure it out for my baby. I would do anything for her.”

In 2008, Lillian’s pregnancy revealed abnormal labs that warranted another colonoscopy. As soon as she was far enough along in her pregnancy to undergo the procedure, the doctors found stage I colon cancer. 

“Because I was experiencing so many health issues, my mom traveled from Indiana to Arizona - where I live - to take care of me,” Lillian said. “When the doctor came in to tell us that I might have cancer, my whole body got flush and I passed out.”

A biopsy confirmed her diagnosis and a surgeon gave Lillian the pathology results over the phone. At first, Lillian didn’t want to get the cancer removed until after she had the baby.

“I was so afraid I would lose my child,” Lillian said. “But my mom helped me through it, and I found the courage I needed for myself and Amara. The cancer would have gotten much worse if I hadn’t gotten it removed right away.” 

After the surgery, Lillian could barely get any food down.

“For a week I couldn’t eat anything but ice chips and jello,” Lillian said. “But I knew I needed to keep eating to give my daughter the nutrients she needed.”

Lillian persevered and gave birth to a healthy baby girl months later at 41 weeks.

“My daughter and I have such a special relationship,” Lillian said. “I’m so thankful that I’m still cancer-free and have a healthy teenage child all these years later.” 

Six Years Post Surgery – Learning About Follow-Up Treatment for the First Time

When Lillian was discharged from the hospital after her hemicolectomy, she wasn’t aware that she needed any further care regarding her cancer diagnosis.

“The doctors told me everything was fine after the cancer was removed and didn’t tell me to come back for any follow-up treatment,” Lillian said. “Even my primary care doctor knew about it and didn’t say anything.” 

Because of this, it was years until Lillian found out she was supposed to receive regular follow-ups as a colorectal cancer survivor. 

Fortunately, Lillian started working at the Scottsdale Palo Verde Cancer Center in Arizona in 2014. It was there that she first learned about cancer survivorship follow-up testing and treatment. 

“I casually brought up my previous cancer diagnosis to one of the doctors I was working with at the time and asked him if he could look at my paperwork,” Lillian said. “When he reviewed it, he was in shock that I hadn’t gotten any follow-up care for six years. He immediately ordered me a PET scan and blood work, and educated me about regular follow-up treatment I should be receiving.” 

Since then, Lillian has gotten a colonoscopy every five years and regularly checks in with her healthcare providers about her history with colon cancer. If Lillian hadn’t been employed at a cancer center, who knows how long it would have taken for her to get the treatment she needed. 

Lillian’s Involvement with the Alliance 

Lillian found out about the Alliance when her work – Scottsdale Palo Verde Cancer Center – held their first-ever colon cancer awareness event led by Dr. Chadha, M.D..

“There were multiple vendors at the event, including the Colorectal Cancer Alliance,” Lillian said. “From there, I found out about the Walk to End Colon Cancer, and my daughter and I have been participating nearly every year since 2017.” 

The Phoenix Walk to End Colon Cancer event occurs each year, previously known as the “Phoenix Undy Run.”

“Every year Amara asks me if we are going to do the Undy run,” Lillian said. “She gets super excited about it, and it’s a sort of tradition of ours.” 

More recently, Lillian has been running into insurance issues with trying to get genetic testing related to her cancer diagnosis. The Alliance Patient & Family Support Navigators have been working with Lillian to make sure she gets connected to the resources and information needed to navigate these ongoing challenges.

“I had no idea that all of these resources existed through the Alliance,” Lillian said. “It’s harder to talk about in Hispanic communities like mine. There’s a stigma about it, and it makes it harder to share information. I think what the Alliance is doing to educate people about colorectal cancer is so important.” 

What Lillian Wants Others To Know About Colorectal Cancer 

Lillian has come a long way since her colon cancer diagnosis at age thirty. Now 45 years old, Lillian reflects on what she hopes others will consider when it comes to CRC.

“Even if you think it’s nothing, it could be something,” Lillian said. “I didn’t have any family history, and I still got colon cancer. If you’re having any slight symptoms or changes in your bowels, make sure you talk to someone about it. If I had ignored it like I usually do when I get sick, things might not have turned out the way they did.”

Because of these experiences, Lillian has a new perspective on the way she treats her healthcare. 

“You need to advocate for yourself,” Lillian said. “If I hadn’t talked to my co-worker about my diagnosis all those years ago, I wouldn’t have been getting the regular care I need. Don’t just expect the doctors to tell you everything. Make sure you ask a lot of questions and get second opinions if you need to. Just because you’re a survivor, doesn’t mean you should stop taking care of yourself.”

Spreading Her Message Far and Wide 

Lillian now works as a Patient Access Representative with Phoenix Children’s Hospital in the oncology department. She helps get patients checked in and is often a family’s first point of contact when arriving at the hospital. 

“I do it because I love the kids,” Lillian said. “If I’m having an off day it can impact them, so I have to be my best for them even when I don’t feel good. Knowing that I have other resources to offer – like the Colorectal Cancer Alliance – means so much. It helps me to know that I’m doing something right.”

Lillian isn’t just a source of support for the patients at Phoenix Children’s Hospital. She’s also raising awareness amongst her family and friends. 

“I have conversations with my friends and family about getting checked at 45,” Lillian said. “I’ve even been talking to some family members about symptoms they’ve been experiencing and how to go about getting a colonoscopy. My father and brother are getting regular check-ups now and that gives me so much peace of mind.” 

Because Lillian is here to tell her story, she is helping countless other people to remain vigilant about colorectal cancer, as well as resources that might support them with their individual circumstances. 

“As a first-generation Puerto Rican, we aren’t always aware of our family histories,” Lillian said. “The more we talk about these things, the more we can make sure other people get the medical care they need.” 

Lillian is now a wife and stepmother to four other children in addition to Amara. Her home is lively and full of love. Lillian brings so much joy and nurturing to those around her, and the message she has to share through her story is timeless. 

“I’m so thankful for the life I have today,” Lillian said. “I hope that other people who are experiencing symptoms and/or a cancer diagnosis will continue asking questions and seeking answers until they get the help they need.”