Remaining Positive Amidst a Stage 4 Rare GI Cancer Diagnosis

Despite a rare cancer diagnosis, Amanda Bronga remains positive.

Navigating a rare gastrointestinal cancer for which there is no treatment plan can be difficult for anyone, but a 38-year-old mother of two tries to remain positive despite changes to her body, which are preventing her from performing daily tasks around her home.

As Amanda Bronga seeks help from her family as she undergoes treatment for stage 4 jejunal adenocarcinoma, she urges family member and caregivers of patients with cancer to seek support during this time as well.

“If you're a family member going through this, find someone you can talk to, find an outlet for yourself because they're going to need the support just as much as we do,” Bronga said. “Surround yourself with positive people, positive outlooks. Mindset, positivity and where your mind is really affects your cancer treatment.”

Proceeding Without a Plan

Bronga started experiencing symptoms of what she thought were gallbladder attacks in March 2020. She was admitted to the hospital, during which her medical team found a small partial obstruction. She underwent surgery to remove the obstruction, which was sent out for testing. It was determined that she had stage 3 small bowel cancer, particularly jejunal adenocarcimoa. This diagnosis came as a surprise to her despite her mother having cancer.

“My mother has been battling cancer for (12) years of her life (at that time),” Bronga said. “In my mind, I already knew or suspected that sometime down the line, I was going to get cancer. But I didn’t think it was going to happen so fast, and I was shocked to find out that I (had) stage 3 (cancer).”

After receiving the diagnosis, Bronga met with an oncologist, who told her that there wasn’t a recommended treatment plan for her cancer type.

“He literally handed me a piece of paper and said, ‘For small bowel cancer, because it’s so rare, we follow general colon cancer guidelines,’” she said.

According to the American Cancer Society, an estimated 12,070 patients will be diagnosed with some type of small intestine cancer in 2023. In addition, small intestine cancer accounts for fewer than 1 in 10 cancers in the gastrointestinal tract and fewer than 1 in 100 cancers overall.

Given how rare small bowel cancer is, Bronga was skeptical that another treatment protocol would work for her.

“I was kind of in shock that there wasn’t a specific protocol,” she said. “I became very worried that this wasn’t going to work for my cancer. I actually had questioned my doctor about maybe going a step further, doing a PET scan, doing more scans, doing something else. But he kept referring back to the colon cancer protocol, saying, ‘This is not what we do. It won’t be approved by insurances.’ And it was very disheartening and scary to know that I was doing something that might not work.”

She underwent treatment with a pill-based chemotherapy before experiencing heart issues from the therapy. Bronga said it is not really known how the cancer responded to treatment; since she underwent surgery to remove a large portion of her bowel, the chemotherapy was used as a way to destroy any lingering cancer cells.

Hoping to Exceed the Average

Fast-forward to the summer of 2021, Bronga started having some complications, but it took a while for her care team to diagnose it. In August 2022, when she was 38 years old, her team determined that her cancer had returned, and it was stage 4 disease. Doctors told Bronga that she had approximately 2 years to live.

“I know everyone takes (that news) differently, but for me, I burst into tears,” Bronga said. “I hugged my husband and I hugged my mother in law. … Just because they gave me 2 years, I look at it as that’s the average for people with small bowel cancer. That’s just the average; I could be exceptional. I could make it 5 years. I could fight until my last breath and make it 10 years. Just because they gave me a time limit doesn’t mean that’s my time limit.”

She started a different chemotherapy plan with a new oncologist to address the tumors throughout her body, of which her team knows of four at the moment.

“We’re noticing with this chemo plan that (the tumors) are actually shrinking. They’re responding to the chemotherapy that I am having,” Bronga said. “That was something I was told was not going to happen, that this was just palliative-care chemo. And it was just to help me get a couple of years with my family and my kids; they weren’t planning on seeing any shrinkage, and the tumors are shrinking. So it’s been very positive this time around.”

‘Rose-Colored Glasses’

Although Bronga’s husband was by her side when she received the diagnosis and when treatment plans were discussed, she tried her best to protect her son and daughter from this reality because they are young.

“With my kids, to be honest, I kind of hid it from them. They don’t really know that I don’t have a chemo plan,” she said. “They’re very naïve when it comes to cancer. My mother battled it for 15 years, and so they’ve always seen someone get better or have time. … We’ve had multiple people in our family that have had different forms of cancer and been told they don’t have much time left, and now they’re 18 years old, so they’ve got these rose-colored glasses on when it comes to cancer.”

She said that she especially wants to protect her daughter throughout this time in her life.

“I don’t want (my kids), especially my daughter, to even worry about life without mom,” Bronga said. “I want her to focus on school and her friends, and have a normal life as much as possible.”

During the particularly tough times, Bronga said she finds empowerment from her mother and keeps herself busy.

“Some days are very difficult, obviously, but I think about my mother and how hard she fought,” she said. “If she can do it, I can do it. I’ve always been a positive person. I try not to think about it. I immerse myself in crafts, whether it’s knitting, painting, scrapbooking. I try and focus on every day as it comes, not what’s coming tomorrow.”

Going Through the Day-to-Day

She said that one of the things that she finds difficult is navigating the changes to her body and how they affect doing day-to-day tasks. For example, she cannot do the laundry, sweep, mop and other tasks that she, as a 38-year-old woman, should be able to do.

“Now I'm stuck relying on family members and friends,” Bronga said. “My mother-in-law is here almost every day to help me get caught up on chores and housework. I can't even go for a walk, my muscles are so deteriorated. It's very hard, facing the fact that you're changing physically and you're almost acting like an 80-year-old woman and you're only 38.”

Bronga was used to being a person who was able to take care of everything herself, but having to rely on others was a lesson she needed to learn. She offered some advice for family members and caregivers of patients with cancer.

“Have patience, maybe put yourself in their position, try not to get frustrated with them,” she said. “I noticed with my husband, it’s very hard for him sometimes to really try and care for me because I’m this independent woman. I was doing all the things. And it’s been very hard for him watching me go through this.”

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