Heather Scholten used to get a deer-in-the-headlights look from just about everyone who heard her story.
They couldn’t understand how she could elect to remove both her breasts and her ovaries without ever being diagnosed with cancer.
She felt her story was important to tell anyway.
Scholten’s mother, grandmother and sister were all diagnosed with breast cancer in their early 40s. Her mother lost her fight with the disease at the age of 59, after three bouts of cancer.
Scholten, now 42, decided she wasn’t content waiting around for it to happen to her. All four women – including her mother before she died in 2007 – were genetically tested and found to have the BRCA2 gene mutation. It meant Scholten’s chance of a breast cancer diagnosis in her lifetime was close to 90 percent. With support from her husband, she elected to have a double mastectomy and a full hysterectomy.
That story has become a little easier to tell.
Last week, actress and director Angelina Jolie made public the fact that she had a double mastectomy after testing positive for the BRCA1 gene. It started a national conversation about proactive health care and the resources available for such pre-emptive treatments. It also put a face to the issue – a face that symbolizes beauty and sensuality.
“It makes it so much easier to tell my story,” Scholten said from her remodeled century-old home in Cheney.
It’s been seven years since she had the surgery, done by Rockwood Clinic doctors, and Scholten said she hasn’t regretted it once. The local support helped tremendously, she said, and so did insurance. The genetic testing was covered completely, and her out-of-pocket expense for the $40,000 surgery was only about $800.
Local doctors said more insurance companies are getting on board with the preventive measures, and if the surgery is not covered, the company must specify that upfront.
Cancer Care Northwest surgical oncologist Dr. Stephanie Moline said genetic testing is a conversation both men and women should have with their doctors.
The testing shows predispositions for various cancers and other maladies like heart disease.
Surgical oncologist Dr. Maryam Parviz said family history of a certain condition is the biggest indicator that genetic testing could be useful.
“When we see a patient that develops breast cancer at a young age, we always tend to at least discuss genetic testing with them,” Parviz said.
Medical oncologist Dr. Joni Nichols said those already diagnosed with cancer should still consider genetic testing, as it can provide clues to the best kinds of treatment for a patient and provide important information for that person’s family members.
Of those who have cancer, a very small number test positive for the gene mutation. However, for those who do have the gene, a mastectomy can reduce a person’s risk of breast cancer from 90 percent to 5 percent.
Nichols said the resources are in place locally for men and women to get tested, receive counseling and follow a treatment plan. Providence Sacred Heart Medical Center has a genetics unit and works closely with Cancer Care Northwest.
“We are a regional center for women who might be facing these decisions,” Nichols said.
Parviz noted the surgery is not for everyone, even those who test positive for the gene. Some choose either a mastectomy or a hysterectomy, depending upon what their family history indicates.
“There’s a lot of women that just say, ‘I want both breasts off’ ” before they even know if they have the gene, Parviz said.
The oncologists and counselors then work with the patients to determine if regular mammograms and close monitoring are sufficient or if the surgery is the best course of action.
For Scholten, a food blogger and mother of two, the peace of mind that comes from knowing her risk of breast cancer is the same as anyone else’s was the motivator.
It helped having a plastic surgeon who was “a perfectionist,” she said, and she was able to use stomach tissue for reconstruction instead of implants.
She has talked to her own daughter, who is 15, about the genetic testing, which is available starting at age 16.
“I want her to be informed and make an informed decision, but I also don’t want her to feel like she has a scarlet letter,” Scholten said. “I hope that she wants to find out someday and that she does what’s best for her.”
It’s something Scholten wishes her mother, who had a hysterectomy after her cancer diagnosis, had discovered earlier.
“I think she would have done it in a minute if she knew it would save her life,” she said.