An Informed Choice

Johna Kern shares a love of laughter with her mother and two sisters.

When the women in this tight-knit family get together, there’s plenty of good-natured teasing. But the Canton woman says that underneath the laughter, the women in her family shared something else that made her and her siblings worry about the future.

Johna and her siblings lived through their mother’s diagnosis and successful treatment of cervical cancer and two cases of breast cancer. As the oldest of the three sisters, Johna was only eight years old the first time her mother got sick.

And all of the girls knew about the family history -- both a grandmother and a great-grandmother had died from ovarian cancer. “We always kind of knew, deep down, that we were going to get it,” says Johna. “I’ll be honest. The year I turned 28, the age mom was when she was first diagnosed, I thought, ‘now this is when it could happen.’”

What was her chance?

Last year, at age 32, Johna decided to take action by going to Edith Sanford Breast Specialty Clinic. The family knew Johna’s mother had tested positive for the BRCA2 gene. And Johna and her sisters wanted to know their risk.

Sanford Health genetic counselors helped the family look through their medical history and calculate each woman’s chance of developing cancer. And when the results came back that Johna had the genetic mutation, putting her risk of developing breast or ovarian cancer at more than 90 percent, it was a relief to finally have some answers, she says.

“It can be mind boggling, but once you see it on paper, you have the information you need,” says Johna. “Once we knew, we had options, choices we could make.”

Fellowship-trained breast health physician Dr. Jesse Dirksen says he sees many women who are concerned they may be at high risk of developing breast cancer. Women can be seen at the clinic by a doctor’s referral or they can schedule their own appointment.

The purpose of the Edith Sanford Breast Specialty Clinic is to provide a specialized form of education, risk assessment, genetic counseling and testing, individualized cancer screening and proactive support for women. A team of breast health experts, including Dr. Dirksen and genetic counselor Kristin DeBerg, work to get the information their patients need to determine the best plan of care.

“It can sound scary to go to a specialty clinic, but usually by the time the patient leaves our doors, that anxiety is gone,” says Dr. Dirksen. “We’re able to tailor our approach specifically to each patient and help these women be proactive about their health.”

Knowledge as power

During the visit, Dr. Dirksen talks with his patients about their history and any previous or current breast problems. He also reviews any imaging that may be needed. Sanford’s genetic counselors help patients determine if insurance will cover genetic testing. Through the use of sophisticated risk assessment tools, they can to help women determine their lifelong risk for the disease.

“The screening we have today has greatly improved,” says Dr. Dirksen. “With some women, what is standard is not enough while for others it may be more than they need. When we can work specifically with the patient, our screening can be more efficient.”

Johna’s situation was rather unique in that her family clearly carried the genetic mutation for breast and ovarian cancer, says Dr. Dirksen. Only five to 10 percent of breast cancer cases are genetically driven.

“There are plenty of options for women to consider, even if they test positive for the BRCA2 gene,” says Dr. Dirksen. Johna decided to undergo a preventive mastectomy and hysterectomy. She had experienced her mother’s cancer treatments and knew she didn’t want to constantly worry about when her disease might start. Her surgeries and personalized care plan have lowered her lifelong risk of breast and ovarian cancer from more than 90 to less than 5 percent.

A choice for health

“My mother was very brave and I had so much respect for her and how she came through all of these things,” says Johna. “My breasts do not define me as a woman and I decided that in the whole scheme of things, I’d rather take my health into my own hands.”

Johna said she had no misgivings about either surgery, and she’s now getting ready for the second phase of breast reconstruction. Throughout the whole process her whole family, including her mother and two sisters, have been there for her, lifting her spirits during the lowest times.

Now Johna’s life has returned to normal. The mammograms and MRI that were once required every six months are no longer needed. Sometimes the results of the tests were negative, but other times came back as precancerous. The nagging worry about what would be revealed is gone from Johna’s mind.

She is back to work as a registered nurse, and back to her hobbies, which include making original flower arrangements for friends, weddings and nearly every room in her house.

“There’s nothing more important than your health,” says Johna. “And I want women to know they have so many options. I’ve been through this and life is so good.”

No woman should ever hesitate to contact the clinic to talk about breast health, says Dr. Dirksen. Edith Sanford Breast Specialty Clinic’s mission is to help women feel secure and knowledgeable about their health.

“A lot of the fear and anxiety of a disease is the unknown,” says Dr. Dirksen. “We empower patients with knowledge and put them in control. Women have lots of options and we’re here to provide that information.”

Posted Date: September 2013

An Informed Choice

Johna Kern knew that three generations of women in her family had faced ovarian and breast cancer and she’d always wondered when she would face the disease. She had choices to make and Edith Sanford Breast Specialty Clinic gave her the knowledge she needed.