When the family legacy includes cancer: A mother’s story

Denise Teter and her daughter Victoria share a genetic trait that predisposes them to develop a rare kind of colon cancer.

Oct. 24, 2011.  A warm, sunny autumn day filled with infinite possibilities. A bike ride, a walk in the woods with my dog, Charlie.

Instead, at a regular checkup, I was told I had a rare and aggressive form of colorectal cancer. And since I am a mom, the worst part of the news was learning that FAP (familial adenomatous polyposis) is, as the name suggests, genetic. 

I got my diagnosis at age 47, much older than most patients. And by then, I had three teenage daughters.

It took me two days after getting the news myself before I could bear to tell my husband of 30 years that the doctor had found a tumor in my rectum, and what FAP could mean for our children. Kevin and I cried. And then he never stopped researching and educating himself on FAP and how to help us.

Testing revealed my eldest daughter, Victoria, has the faulty gene that means she will develop FAP at some point in her life.  At 17, she had just as many polyps as I had at 47, though none of hers was malignant. Her  twin sisters, Olivia and Julia, then 14, were found not to have the gene.

Victoria’s reaction was typical of her: Relief that her little sisters didn’t have to deal with knowing that, like me, she faced losing her entire colon.

My reaction: I had to show Victoria that her life could continue to be a full and happy one, despite cancer.

My treatment started with getting a chemotherapy port surgically implanted at the Hospital of the University of Pennsylvania. The next day, we all went on a long-planned Thanksgiving trip to Disney World, an early high school graduation gift for Victoria.   It was a fabulous, carefree vacation. We didn’t discuss what was coming; we lived in the moment. 

Chemo started the day after we returned. Over Christmas break, Victoria took me to a three-hour chemo infusion.  We curled up together on the recliner, covered ourselves with a blanket, put on a movie, and promptly fell asleep.  It was the quickest infusion and sweetest three hours spent at HUP. 

February and March of 2012 found me at HUP getting my daily radiation treatments while wearing a chemo pack for 30 days.  Friends pitched in to prepare meals for my family; all I wanted to do was sleep. As winter turned into spring, I looked forward to my 60 days of healing before having the surgery that would forever change my life.  I felt good – good enough to shop with Victoria for her prom dress and plan the graduation party.

Surgery was scheduled for May 11 — Mother’s Day weekend.  Prom was May 19.  If all went well, I would be discharged from the hospital the day before prom.

I knew I would lose my colon, but I had no idea what my new body was going to be like.  I just knew that I had to show Victoria that our diagnosis was not a death sentence, it was a license to live!

I did make it home in time for prom, and went to the hair stylist with Victoria.   We even hosted a small after-prom sleepover.  Having all that life in the house lifted my spirits.

Daily life with the ileostomy was a challenge.  The first time my visiting nurse had me change the bag myself, I fainted. It took about a month for Victoria to work up her nerve and ask to see “my setup.” She was stunned.  We cried. But, I promised her this:  I will be with you every step of the way.  I will change your bag, help you with your diet, and find stylish clothes to conceal the bag.  Together, we’ll survive.

Summer was bittersweet.  Me living with an ileostomy and helping Victoria to get ready for college at Stetson University in Florida.  The whole family drove with her down to her new, temporary home – and I cried through every state on the way back to Pennsylvania!

I’m five years healthy.  I’ve had some medical problems, but I face them with my dedicated team of doctors.  Victoria is now 22 and still gets yearly colonoscopies.  She has a truly amazing doctor who will tell us the optimum time for Victoria to have her colon removed.  I cry about passing that gene on to my girl.  I know I can’t control our genetics, but it doesn’t make me any less angry that she has to go through this ordeal.

My mother went through genetic testing, and the results were negative for FAP. Though my father was not tested, to our knowledge this cancer has not occurred on his side of the family. The genetic specialists at HUP said it’s likely that my genes self-mutated at conception. 

My mother once told me that her grandfather was the bravest man she ever knew.  He lost his vision due to detached retinas when he was in his 40s.  He learned how to take the New York subway, alone, to the Lighthouse Guild every day to be trained to live with blindness.  A couple years ago, my mother told me I was the bravest woman she knew.  Now, that is a family legacy I would be proud to pass along.

Denise Teter is an office manager who enjoys walking with her dog Charlie, gardening, and living life to the fullest. She lives in Kimberton, Pa., with her husband and their daughters. She may be contacted at deniseteter5@gmail.com