September 13, 2011 > A Mother's Legacy
A Mother's Legacy
Genetic Counseling Informs One Woman's Screening and Treatment Decisions
Lynda Peck knows what it's like to live with uncertainty. Certain types of cancer run in her family. At 27, she was diagnosed with bladder cancer. And this past June, after a long battle, she lost her mother to stomach cancer.
One of the physicians caring for Lynda's mother during her treatment was Cancer Genetics Program Medical Director Vandana B. Sharma, M.D., Ph.D. During her treatment, at Dr. Sharma's advice, Lynda's mother received genetic counseling. As a result, Lynda did as well.
"What happened was my mother was counseled, then did the counseling and testing after her surgery, and that's how she tested positive for Lynch syndrome," she explains. "I went back in May of this year and got counseled, got tested and tested positive."
Lynch syndrome-also Hereditary nonpolyposis colorectal cancer (HNPCC)-is genetic condition characterized by a high risk of not just colon cancer, but also other cancers including endometrium, ovary, stomach, small intestine, hepatobiliary tract, upper urinary tract, brain, and skin.
Lynda did her testing and counseling with Nicki Chun, M.S., CGC, a genetic counselor at Stanford, a process that she says gave her and her doctors important information that helped her make more informed decisions.
"The counseling did provide recommendations for screenings like yearly colonoscopies," Lynda says. "For other screenings, including the bladder and uterus, they recommended notifying my doctors and getting examinations.
"I had a hysterectomy in 2008 due to fibroids, but I still had my ovaries and they recommended removal. There are no adequate screenings for ovarian cancer, so they recommended removal, and that's what I'm going to be doing."
All of Lynda's treating physicians-including her gastroenterologist, dermatologist, family practice (primary care physician), urologist and gynecologist-were notified and received the results of Chun's report.
"Making doctors more aware of what Lynch syndrome is part of the process, because many members of the medical community don't know about it," she says. "I was lucky; my primary care physician was very interested in it and talked to Dr. Sharma. She said, 'Let's have a game plan.' I've got great doctors. All of my doctors that I've told have said, 'Let's keep on top of it.'"
Her mother's legacy
Lynda says her mother's pursuit for more information about the genetic link to her cancer has influenced not just her, but her family as a whole-particularly Lynda's two younger sisters. Prior to Lynda going through counseling, they hadn't thought about it.
"As a matter of fact, one of my sisters got tested for Lynch syndrome because I was, and she tested negative," according to Lynda. "My other sister is still on the fence, but she's going to assume she has it and talk to her doctors about regular screenings. My mother's side of the family, from my grandmother's side, has a strong family history of colon cancer, and they died from it. It puts that over your head and you have to be proactive."
Lynda says she is lucky for two reasons. First, because her mother's experience gave Lynda the knowledge she needed to undergo genetic counseling.
"My mother's legacy is that she gave us a gift by preventing us from enduring all the procedures she went through," Lynda says. "She was in and out of the hospital for the last six months, and she died on June 23, 2011."
Care close to home
Lynda says she also feels fortunate to live in close proximity to medical services and programs that have improved her treatment, as well as her knowledge about her genetic predisposition.
"My mom has brothers who have children, and they're aware and it's up to them to determine if they will test," she explains. "My one uncle lives in Oregon, but the closest facility for testing is Portland or Crescent City, which means he will have to drive a couple hours to get tested.
"Having to travel will make a person less likely to do the testing that would take less than five minutes. We live in a great area in regards to the medical technology. Dr. Sharma has been really proactive. When my mother was in treatment, every time she saw my sister and I, she said, 'Have you gotten tested?'"
A word of advice
After her mother's experience and her own, Lynda says she has advice for other people out there with a potential family predisposition for certain types of cancer.
"I would say talk to your doctor, get him or her to be aware and read the literature," she says. "I would even give Dr. Sharma their contact information if I passed them on the street. I'm sure she wouldn't mind telling people about it.
"I'm the type of person where I want to know. I don't want to have my head buried in the sand and think it's not going to happen to me. Good or bad, I want to know so that I can do something about it. Genetic counseling allows you to make very proactive, very important, informed decisions, whatever those may be."
For information about the Cancer Genetics Program at Washington Hospital, including genetic counseling through collaboration between Washington Hospital and the Stanford Cancer Genetics Clinic at Stanford University Medical Center, call (510) 608-1356 or visit www.whhs.com/cancergenetics/