We are excited to host Be Seen, Get Screened guest author Kaye Blackburn. After witnessing the devastating impact of colon cancer on several of her family members, Kaye has made it her mission to spread the word about early-onset colon cancer. She has contributed this post about her daughter, who battled colon cancer in her 30s, to engage Be Seen, Get Screened supporters in her fight to save lives.
CANCER. This is a word that I’ve heard all my life.
It started with my mother’s side of the family. She was the only girl in a family of five. Her youngest brother died of colon cancer at a very early age. As a little girl I remember her trying to explain to me what had happened to my uncle.
A few years later, another uncle died when I was a teenager. Again, the cancer word came up. Three out of the four boys died of colon cancer. When I was 18 that dreaded word came up again, but this time it struck my own older brother, Jack. He was 32 at the time and lived 18 months with the disease. My life took another turn a few years after that when I was a young mother. I heard the devastating news that my own dear mother was diagnosed with stomach cancer. She lived two years.
My last living brother was also diagnosed with early-stage colon cancer after my mother passed away. He had a resection of his colon and the doctors say the early detection of his cancer saved his life. Colon cancer has also impacted several members of my extended family over the years, including a close cousin of mine who lost her 42-year-old son to this horrible, indiscriminate disease.
We knew there was something terribly wrong and whatever the problem, it was causing an unusual prevalence of colon cancer in our family and had taken the lives of so many of our loved ones.
As I fast forward to 2010, my daughter started having problems with pain in her abdomen. At first they diagnosed it as irritable bowel syndrome, or IBS. She was a young wife and mother of two children and full time nurse. She was very busy and stressed, so the IBS diagnosis seemed to make sense.
I begged her to get a colonoscopy but she always responded, “I don’t have the money or the time.” I offered to pay for this test, but she just kept putting it off. Finally, the pain got so overwhelming that she went into the emergency room, where her doctors told her she was having a gallbladder attack.
After further tests, however, her doctor ruled out the initial gallbladder diagnoses and scheduled her for a colonoscopy in late August. He found and removed a polyp in the descending colon, but could not get the scope through the first bend into the transverse colon. He concluded that the polyp he removed was probably not cancerous due to Heather's young age.
Heather's doctor scheduled another colonoscopy for December of that year. When the biopsy report on the polyp he removed came back as cancerous, he still said to “wait” until December when he would perform another colonoscopy.
As a mother, I felt something else was wrong. So with the help of a family physician, we got an appointment with a specialist near Indianapolis. His first words to my daughter and her husband after hearing our family history was “You have Lynch Syndrome.” This is the very first time I heard this term. The doctor explained what Lynch Syndrome was and went on to explain how the disease was plaguing my family with cancer.
Heather had another colonoscopy that revealed stage IV cancer in her ascending colon. She was scheduled for surgery to remove 90% of her colon and biopsy her lymph nodes. 17 of her 24 lymph nodes were involved and the cancer had metastasized to the nerves behind her stomach. After recovery from the surgery she started aggressive chemotherapy.
From there Heather embarked on her cancer journey, undergoing chemotherapy, radiation, surgeries, and testing of other areas such as her uterus, her stomach, and her brain. She encountered astronomical medical costs. I became her second line caregiver behind her husband. Heather continued to work as a registered nurse throughout her illness. She said working kept her busy and took her mind off of the cancer. Heather succumbed to cancer on May 23, 2014 after a four and a half-year battle against the disease.
Lynch Syndrome is an inherited condition that increases your risk of colon cancer and other cancers of the digestive system. Early on Lynch Syndrome was also known as hereditary nonpolyposis colorectal cancer (HNPCC) and was discovered by Dr. Henry Lynch in the 1960s.
Many people with a family history walk around with Lynch Syndrome without ever knowing they have it. Our family now has a new perspective on this cancer threat that has been looming for many years. With the knowledge and the opportunity for early testing we have the tools to fight this disease. Screening and genetic testing is vital for those with a family history of young-onset colon cancer to prevent what Heather and many of our family members have had to endure.
The word cancer continues in our family. I have been genetically tested and the results showed that I am the one who carries the mutated gene. Heather’s two children, 13 and 16 have been genetically tested and have the mutation as well. At age 20 they will begin their lifelong colonoscopies every year. My other two daughters each tested negative for the gene, so they will not face the increased risk of cancer or pass it on to their children.
One of the most difficult challenges I faced as Heather’s caregiver was knowing the gene came from me, her Mother. I’ve had to deal with that guilt through the grief of her passing. My other regret was not aggressively making Heather get the help she needed early on. Had she done so, she may be alive today.
My ears perk when I hear a young person talk about colon issues. It is never a mistake to get help for what potentially could be colon cancer. It’s essential that you get the expertise of someone who is well studied in Lynch Syndrome. I believe and would suggest that if the doctor doesn’t know what Lynch Syndrome is, or says he or she hasn’t “researched” Lynch Syndrome, get a second opinion sooner than later. Be aggressive in your pursuit of medical care and advice because it could mean the life of yourself or your loved one.
Cancer, in any form, is devastating to a family. Grief takes a painful journey that weaves in and out of your life for a very long time. I will probably never get over the death of my daughter. Her children suffer daily because they don’t have their Mom to help raise them. Her husband, father, sisters, extended family still grieve her loss.Please do not wait until it is too late for help. Reach out to other people if you are diagnosed. Find good cancer blogs and become informed. Make friends with others who are on their journey as well. Those of us who have been through this horrible journey need to spread the word. I know Heather, as a registered nurse would say….. Be Seen, Get Screened.