Cancer gene haunts women
April 13, 2009 - 9:00 pm
Five women. Four were diagnosed with breast cancer.
Three did not survive the disease.
Skip ahead to the next generation. Twelve daughters were born to those original five women. Six of those daughters were diagnosed with a cancer.
One had ovarian cancer. She died, but after her treatment was complete. The other five had breast cancer, including Linda Tibbs, 51, of Las Vegas.
Now comes the third generation, the one in which Tibbs has a 19-year-old daughter, Jennifer.
Although technology today is advanced enough to detect cancer in its earliest stage, and rates of survival continuously increase, the gene mutations that create the cancer in the first place continue to be passed from generation to generation.
In all likelihood, this family's newest generation of women, and some of the men, have inherited the gene that stole the life of their grandmothers and grandaunts.
But one thing they have is a way to fight the cells that lead to cancer before they become cancerous: genetic testing for gene mutations known as BRCA 1 and BRCA 2.
The two mutations are commonly found in families with a history of breast and ovarian cancers, health officials say.
Jennifer Tibbs had the test a year ago.
She tested positive for BRCA 2, the same gene present in her mother and grandmother, a two-time breast cancer survivor.
Tibbs, attending school in Reno to follow in her mother's footsteps as a cosmetologist, had no qualms about her decision to get the test and hear the results. After watching her mother and aunt experience cancer and go through treatment, Tibbs said she considers breast cancer just a part of her family's heritage.
"I talk to my cousins about it all the time. We are just like, 'Oh, the treatments and stuff work,''' she said, referring to conversations about breast cancer with two female cousins her age. "We don't cry about it. I think cancer is still a scary thing; but with us I think that we've had so much history with it, that we can't let it control us.''
Her outlook is a far cry from that of generations past, said Dr. Mary Ann Allison, an oncologist and breast cancer specialist with Las Vegas-based Comprehensive Cancer Centers of Nevada.
In the 1950s, '60s and '70s, it was almost unheard of to speak about sickness in a family, she said.
"If you go back a few generations, especially people over age 50, their parents would never talk to children about any sort of disease,'' said Erica Ramos, director of genetic services at Las Vegas-based Amigenics. "It was not considered polite conversation to talk about chemotherapy. That has changed. People understand how important it is to know their family's medical history."
Amigenics, which opened in 2006, is a medical clinic that conducts genetic testing for diseases. Its group of physicians and genetic counselors work with patients who have a family history of breast and cervical cancers as well as colon cancer and Huntington's disease.
Most genetic tests involve just a blood test, said Ramos, the counselor for Jennifer and Linda Tibbs. However, testing buccal cells, from the cheek and inside the mouth, is becoming more common. Buccal cells are collected from patients using a cotton swab or a mouthwash, Ramos said.
A physician typically refers patients to Amigenics, although some are self-referred or have a family member who has been seen at the clinic.
"It is up to the patient to make that decision,'' Ramos said. "Before we administer the test, we counsel the patient on the ramifications of what the results might bring. Genetic testing is very unique and involves a lot of planning.''
Ramos said it takes about a week for blood test results to come back.
If the test is positive, patients are provided whatever support they need. Sometimes they are linked with organizations like Susan G. Komen for The Cure. The nonprofit is a global grass-roots organization seeking to help those diagnosed with breast cancer and promote research.
"We also try to put them in touch with other people who have gone through the process,'' Ramos said. "There are people who have the same experience and can refer them to a physician so they can get the care they need.''
Both Allison and Ramos say genetic testing is the future in medicine, regardless of the disease. They also say health care providers have made big gains in convincing health insurance companies of the importance of such tests.
In recent years, women who tested positive for BRCA genes would be told by their insurance companies they had a pre-existing condition and therefore their care could not be covered under their health plan if they were subsequently diagnosed with the related disease.
But President George W. Bush last year signed the Genetic Information Nondiscrimination Act into law, which prohibits discrimination against anyone whose genetic information shows a predisposition to illnesses such as cancer or heart disease.
That law has opened the door for more people to take advantage of genetic testing, Allison said.
Women at high risk for developing breast cancer -- those who have tested positive for a BRCA mutation gene -- have several options to safeguard against the disease.
Risk management includes frequent mammograms, breast MRIs and clinical breast exams.
In some cases, women are prescribed tamoxifen, a drug that has been used for 30 years to fight breast cancer.
A mastectomy also is an option, Allison said.
And because cervical cancer is associated with breast cancer and the BRCA genes, some women who test positive for either of the genes can prevent cervical cancer by having their ovaries removed.
Linda Tibbs was diagnosed with breast cancer in 1998.
She said Jennifer's two female cousins have yet to decide whether to have the genetic testing. Their mother, Tibbs' sister, had breast cancer twice.
"She doesn't want to get tested,'' Tibbs said about her sister.
To protect herself against breast cancer recurrence, or ovarian cancer, Linda Tibbs had a bilateral mastectomy, and also had her ovaries removed, Allison said.
"Jennifer's a different story. She's 19, single and in the midst of her career,'' she said. "As she gets older, she will know this is going to be something she's going to have to deal with.''