Colon and Endometrial Cancer Survivor Speaks Out About Lynch Syndrome

Jill Chang says she always knew she might get cancer some day. It seemed to run in the family. Her grandmother, mother, and uncle had several cancers including colon, breast, lung, and melanoma skin cancers. But she never dreamed she’d be diagnosed with cancer at age 30. Like many other young adults with cancer, Chang was diagnosed at a time when she was just starting out in life. She was in the early years of her marriage, she had a baby to take care of, and she was relatively new in her career as a nurse.

“It was a shock for me to be diagnosed with colon cancer. I didn’t think it was going to happen that soon,” said Chang. “It was in my family and it was something to be concerned about sometime in my life, but I was thinking it would be when I was older – not age 30.” Chang’s mother was diagnosed with her first cancer at age 48.

The “colon cancer gene”

Chang’s health problems began in 2001 with symptoms of colon cancer. Typical symptoms include a change in bathroom habits, bleeding, and belly pain. She went to the doctor who scheduled her for a colonoscopy. The test showed she had colon cancer and a biopsy later confirmed it. Luckily, it was found early at stage IIA. The tumor had not spread to other organs or to lymph nodes. Chang was treated with surgery and chemotherapy.

Chang’s diagnosis alarmed her brother and sister, who both immediately got themselves checked. Tests showed her sister was fine, but her brother, age 35, also had colon cancer. His tumor was smaller than Chang’s and he was treated with surgery alone.

“We just called it ‘the colon cancer gene’ in our family,” said Chang. “We didn’t know the real risk.” Several years before, their mother had undergone genetic testing and spoken to a genetic counselor, but the information was not detailed and the family understood only a rough idea that they were at an increased risk for colon cancer, and for the women, endometrial cancer too. Genetic testing and identifying gene mutations has come a long way since then.

Over the next 10 years, Chang continued to have health problems. She developed a growth on her pancreas called a mucin cyst, which can turn into cancer if left to grow over the years. The surgery to remove the cyst also removed her gallbladder, spleen, and most of her pancreas. During that time, she was also diagnosed with squamous cell skin cancer, and had it removed.

Lynch Syndrome

In 2011, at age 40, Chang began having abnormal vaginal bleeding, and was diagnosed with endometrial cancer. She was treated with surgery, chemotherapy, and radiation. While she was at one of her medical appointments for this cancer, Chang noticed a poster on the wall about a hereditary condition called Lynch Syndrome.

“On the poster there was a body with colored darts on all the parts that could have cancer. When I looked at it, that was the first time I saw the words ‘Lynch Syndrome,’” said Chang. “I thought, ‘Oh my gosh. This is my family.’” Chang and her family then had genetic testing and counseling. She, her mother, and her brother all tested positive for Lynch Syndrome. Her sister was negative.

Lynch Syndrome can be caused by a genetic mutation that is passed down from parents to children. People who have it are at a higher risk for several types of cancer, including colon, endometrial, ovary, stomach, small intestine, pancreas, kidney, brain, and bile duct. People with a strong family history of colorectal cancer or polyps should talk with their doctor about genetic testing.

Doctors recommend family members who have or may have Lynch Syndrome start colonoscopy screening during their early 20s, or 2 to 5 years younger than the youngest person in the family with a diagnosis (whichever is earlier). Testing should be done every 1 or 2 years. During a colonoscopy, polyps can be found and removed and cancers can be found at the earliest stages.

After learning she had Lynch Syndrome, Chang began attending seminars, asking questions, and doing research. She volunteers for Lynch Syndrome International, a nonprofit organization that provides education and support for health care professionals, patients, and researchers. She promotes awareness of the condition by telling her story to the media, and at medical conferences, community health fairs, YMCA health groups, and Bible study meetings.

Chang and her family participated for several years in the Relay For Life event in Massillon, Ohio. Relay For Life events are held every year in communities around the world, raising money to invest in research and to provide information and services to cancer patients and caregivers. Chang joined a team, raised money, and walked the survivor lap.

“I want others to have this knowledge, get tested, and be able to make well-informed decisions about their medical care,” said Chang. “With this knowledge, I can give myself and my family a fighting chance. This is my hope for others too.”

Living as a survivor

Chang’s cancer treatments likely saved her life, but they took a physical and emotional toll. She has lymphedema, a painful swelling, in her abdomen and legs. And she has peripheral neuropathy, nerve damage that causes pain and numbness, in her feet and hands. “It is difficult to deal with these issues, but I am alive,” says Chang.

She has also dealt with depression, a common side effect from cancer treatment, and her 2 sons have had anxiety-related issues. She has returned to work full time, but her husband had to support the family on his own for many years. “I have had to depend on family and friends more often than I wanted to, but I am grateful for the help,” she said. “I couldn’t have made it through this without them.”

As the field of genetic testing advanced, Chang continued to go for more testing and counseling. She learned she has additional gene mutations. One, called ATM (Ataxia-Telangiectasia mutated), increases risk for breast and possibly pancreatic and other cancers. The other, MITF (melanocyte inducing transcription factor) can increase risk for melanoma. Chang now goes for frequent scans, bloodwork, and other exams. She worries that she may have passed the mutations onto her sons. She says they will decide at age 18 whether to be tested.

But Chang says the most difficult part of her journey has been losing her mother, who died after being treated for cancer for the 4^th time. “Losing her has left a huge void that will never be filled,” said Chang. “Although my heart aches every day, I must continue to live. She would want me to embrace life every day, and to live out my dreams of being there to raise my sons, grow old with my husband, and maybe hold my grandkids one day.”

Words of advice

Chang says support from family and friends, pain medication from her health care team, and her own religious convictions helped encourage her and keep her going when she was at her lowest. She says finding out as much information as she could about Lynch Syndrome and her cancers gave her comfort because she feared the unknown even more. She offers advice to others facing a diagnosis:

• Don’t be afraid to ask for help from friends, family, neighbors, religious groups, and other organizations, especially during the time of diagnosis and treatment, and even afterwards.
• Talk about cancer and your feelings. Chang’s grandmother called it “the c-word” and wouldn’t discuss it, but it’s important and healthy to do so.
• Share your health history with your family and encourage others to do so. Our children can use this information to protect themselves and their families, especially as we discover more about our genes, mutations, and what we can do to protect our health and our lives.