18 Jul Jill Chang
Twice Cancer Survivor and Advocate for LS awareness
Finding out at the age of 30, in 2001, that I had colon cancer was a shock, to say the least. At that time, I was a wife, new mom with a 1 ½ year old son at home, and had a career in nursing. As a young adult I often wondered if I would get cancer especially since I had heard about other family members before me who fought it. My maternal grandmother had fought colon cancer three times and breast cancer. My mother’s twin brother died of melanoma in 1985. Then, I witnessed my mom fight three cancers from 48-52 years of age. But I never thought that it would happen at age 30! Then, eight weeks after I was diagnosed, my older brother was diagnosed with colon cancer. He was healthy, fit and only 35 years old. It didn’t make any sense.
A bowel resection and chemotherapy were prescribed after my 2A Stage diagnoses. Luckily, my brother only needed surgery and not chemotherapy because it was caught very early. It was amazing that we both were diagnosed at a treatable stage with good prognoses. It was shocking that we were going through this at the same time and without any medical reason. Through the next 10 years I experienced other health problems. I had a squamous cell carcinoma to the skin removed and a mucin cyst on my pancreas in which 2/3 of my pancreas removed. A mucin cyst can turn into cancer if left to grow over years. During this surgery my gallbladder was removed and my spleen could not be spared.
Then, at the age of 40 I was diagnosed with endometrial cancer. At that time I saw a poster in my doctor’s office about a hereditary cancer syndrome called, Lynch Syndrome. After reading the poster, I just knew that my family must have it and I needed genetic testing as soon as possible. . I wanted to know if I was at risk for other cancers and if there was anything that I could do about it. So, once again I had surgery, chemotherapy, radiation and chemotherapy along with genetic testing. I was positive for LS along with my mom and brother. My sister was negative.
The treatments have kept the cancer away but have had lasting effects on my body. I deal with lymphedema of the abdomen and upper legs, peripheral neuropathy of the feet and hands. It is difficult to deal with these issues, but I am alive.
All these doctor appointment, emergency hospital visits and surgeries affected my young sons. Both have gone through separation anxiety. My husband has had to bare the financial and emotional burdens. I have had to depend on family and friends more often than I would want to. I didn’t want to be so dependent on others, but I am grateful for the help. I couldn’t have made it through this without them. I worry that I may pass LS onto my sons. These things I have no control over.
The hardest struggle that I have had to go through is the death of my best friend, Lynch Syndrome co- fighter, and loving mother. She developed her fourth cancer, lung, right after I was in remission with my second cancer. The chemotherapy didn’t work so radiation was given which ended up damaging her lungs severely. She did not survive. Losing her has left a huge void that will never be filled. 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. We have this HOPE.
Since my diagnoses of Lynch Syndrome in 2011, I have had a passion to raise awareness about LS through sharing my story with: survivors, the local newspaper, major TV news show, LSIs conference, YMCA groups, Bible studies, and community health fairs, Relay for Life Events, and anywhere else I have the opportunity. I want others to have this knowledge, get tested, and be able to make well informed decisions about their medical care. This was something that I didn’t have before my second cancer happened. THIS helps drive me to share my story, volunteer for LSI, and learn more about LS so that I may help protect my family. With this knowledge, I can give myself and my family a fighting chance.
Thank you for helping LSI through your efforts to raise awareness about Lynch Syndrome! We can make a difference, raising awareness together.
Jill Chang LSI Advocacy Director