'You're basically saving your own life'
George Kingson | Hagadone News Network | UPDATED 11 years, 8 months AGO
COEUR d'ALENE - A week ago, few people recognized the acronym BRCA.
But with actress Angelina Jolie's recent announcement that she had undergone a double mastectomy when genetic testing showed that a mutation in her BRCA1 and BRCA2 genes put her at high risk for breast and ovarian cancers, other women began wondering if they, too, might be in danger of developing those diseases.
Mary Hander is an oncology-certified nurse at Kootenai Cancer Center who has undergone specialized training in cancer genetics.
"Sometimes my patients will say to me, 'I've got cancer on both sides of my family and I want to know if I have the cancer gene,'" she said.
They're assuming, she said, that there's one single blood test that will tell them if they're going to get cancer. Alas, no such thing exists, though certain genetic tests can be used to predict specific cancers such as breast cancer.
In her role as counselor, Hander gathers information about her clients' family health histories. From that all-important data, she develops complex family trees that often trace disease patterns back several generations.
"When I was diagnosed with breast cancer, it came as no surprise to me," said double-mastectomy survivor Linda Wood of Coeur d'Alene. "My mother, grandmother, aunt and two or three of my grandmother's sisters all had it and several died from it. Though I was diagnosed with cancer in one breast, I'd always know that this (double mastectomy) would be the way I'd want to do things. You're basically saving your own life and I sure wasn't about to mess with cancer."
Under normal circumstances, all of us have normal BRCA1 and BRCA2 genes to help repair damaged DNA. When the genes themselves become damaged - mutated - the women and men who carry the mutated gene frequently are at higher risk for breast cancer and/or ovarian cancer.
According to the National Cancer Institute, approximately 12 percent of women will develop breast cancer sometime in their lives. This number increases for women who have inherited a mutated BRCA1 or BRCA2 gene. Their lifetime chance of getting breast cancer averages out to 60 percent, making them at least five times likelier to get breast cancer than those with non-mutated BRCA genes.
"Breast cancer is incredibly common," said Dr. Robert Holman, general surgeon at Kootenai Surgery Associates, "but most women with breast cancer are curable. When it comes to treatment options, however, nothing else that I treat involves more complicated decision making (between physician and patient)."
In terms of a mastectomy, Holman said, there are two major decision points. In a prophylactic mastectomy, such as Jolie's situation, there is no existing cancer and the surgery is used to prevent its onset. In a therapeutic mastectomy where cancer has already been diagnosed, the mastectomy becomes part of the treatment.
So, how would you find out if you've inherited the mutated BRCA genes that could increase your risk of breast cancer?
After first meeting with a physician - most likely an oncologist, surgeon or gynecologist who will question you about family background and other cancer risk factors such as advanced age, exposure to radiation, obesity, smoking and estrogen use - you may then be referred to a professional who does genetic counseling. This person will take an in-depth look into your family cancer patterns and, before recommending genetic testing, discuss with you the ramifications of your potential test results. Genetic testing is a highly emotional situation.
The test itself is simple - blood is drawn and sent to a lab - but it is also expensive. Insurance companies usually want you to demonstrate evidence of cancer in first-degree (parents, siblings or children) relatives, as well as the presence of other risk factors before covering the $3,400 charge. Results regarding the presence or absence of BRCA mutations can take up to two weeks to obtain.
If the test results show the presence of mutated BRCA genes, mastectomy is not the first thing that should pop into your mind, numerous health professionals agree.
All doctors are not on the same page when it comes to treatment for those known to be at high risk. According to the NCI, some physicians may advise very close monitoring, such as mammograms and clinical breast exams to help detect the cancer at its earliest stage. Others may prescribe medications like tamoxifen and raloxifene, which have been shown to decrease the chances of developing cancer in high risk women. Still others recommend surgery.
"If possible, most cancers are treated with a lumpectomy," Holman said. "For most breast cancers that are small, a lumpectomy will result in a smaller loss of tissue. For large cancers a mastectomy might be recommended. The cure rates for the two, however, are exactly the same."
With an extensive family history of breast cancer, however, Wood said she never thought twice about having a mastectomy.
"It wasn't important enough for me to have breasts," she said.
The surgical procedure for a double mastectomy does not involve the cutting of muscles or bone, and the recovery is relatively fast. Wood said she experienced little pain.
According to Holman, the breast reconstruction surgery that many women choose is considerably more painful than the mastectomy and has a much higher risk of infection.
"In North Idaho," Holman said, "women tend to be less aggressive about reconstruction than, say, Southern California. Probably only half the women here choose reconstruction."
Even if you do undergo a mastectomy, you're not totally out of the woods for cancer. You may still need radiation and chemotherapy because surgery only treats the cancer cells in the breast - not the cancer cells that have already moved on from there.
Also, Holman said, "We cannot completely remove the breast - it's not encapsulated. Mastectomy reduces the risk of breast cancer by 99 percent, not 100 percent because a tiny bit of breast tissue will be left behind. It markedly reduces the risk, but it doesn't drop it to zero."
For Linda Wood, life after mastectomy has been good. She said she's had some great women friends helping and supporting her along the way and she, in turn, would like to help others facing hard medical decisions.
"My advice to women is to not be afraid of the surgery," she said. "Be afraid of the cancer. Get rid of it as soon as you can, put it behind you and get on with your life."
MORE IMPORTED STORIES
ARTICLES BY GEORGE KINGSON
Rallies not really about machines
George Green: Passion to save the Playhouse
IN PERSON
George Green became executive artistic director of the Lake City Playhouse in 2010. Under his direction, playhouse budgets have increased dramatically as has the level of audience enthusiasm.
Pat Raffee: Grace under pressure
IN PERSON
Pat Raffee is Kootenai County chief deputy county clerk. She was hired in 2011 by County Clerk Cliff Hayes, who died in office last December. She currently works under Jim Brannon, who was appointed interim county clerk by the Kootenai County Commission. Raffee's background includes contract positions as executive director of two Idaho urban renewal agencies (Moscow and Post Falls), extensive consulting in the private sector and a recent appointment to the Idaho Commission for Libraries by Gov. Butch Otter.