Iona Sallison spent the year following her breast cancer diagnosis in a state of shock. She could barely process what was happening and, with the exception of her closest family and friends, was unable to talk about what she was going through. Even support groups were out of the question.
"It was all I could do to deal," she said. "There was no way I'd be able to digest anybody else's story."
But now, with chemotherapy and a double mastectomy behind her, she's able to share hers.
"I'm in a better place now, and I don't mind sharing and hearing other people's stories," she said.
'A sharp pain'
Sallison was 41 when she felt a sharp pain in her breast two years ago. As a program assistant with the Alaska Native Tumor Registry, she knew it wasn't normal.
She recalled thinking at the time,"You shouldn't feel any kind of sharp pain anywhere, especially in a fleshy area."
A clinical exam didn't reveal any lumps, but a mammogram showed a faint outline of "something," said Sallison. A second, higher resolution mammogram showed two overlapping lesions. A biopsy confirmed it was cancer. Her doctors also found cancer in one of her lymph nodes.
The standard course of treatment was surgery followed by chemotherapy and, if necessary, radiation. Sallison, afraid of dying on the operating table, asked her doctors if she could postpone surgery. They consulted with the Mayo Clinic and agreed she would undergo chemotherapy first because her tumor was small. Sallison completed six rounds—once every three weeks. Halfway through treatment an echocardiogram showed one of the drugs was affecting her heart function, so she temporarily stopped treatment. Heart medication helped restore function and she was able to resume chemotherapy, but she says she'll be on the heart medication long term.
Because Sallison was diagnosed relatively young, she decided to undergo genetic testing. It revealed she had the BRCA2 gene mutation, which can lead to increased risk of breast and ovarian cancer in women. Not wanting to risk recurrence, she chose to have a double mastectomy. It was a decision that was both hard and easy.
"You don't want to keep the cancer, but I was attached to these," she said laughing and gesturing to her chest.
With chemotherapy, a mastectomy and reconstructive surgery behind her, Sallison has a more positive, if cautious, outlook on life. Because her BRCA2 gene makes it more likely she will get ovarian cancer, she also plans to have her ovaries removed. For now she's happy and healthy.
Preventative care and improving treatment odds
Breast cancer is not always preventable, said Cancer Education Research Specialist Melany Cueva with the Alaska Native Tribal Health Consortium Community Health Aide Program. However, there are wellness choices both women and men can make to decrease their cancer risk. Although breast cancer in men is not as common, Cueva noted it's important that men know they can and do develop breast cancer.
"Physical activity and maintaining a healthy weight are two things that are really supportive of good breast health, and can also help (reduce) breast cancer recurrence,"said Cueva. The American Institute for Cancer Research also recommends breastfeeding, for women, as well as avoiding alcohol to further decrease the risk.
But because lifestyle changes aren't always enough, early detection is vital to increase the odds of successfully treating breast cancer once diagnosed, Cueva said. Doing regular breast exams and being able to identify changes in your breasts are important first steps.
"This is more than just noticing lumps, but becoming aware of what our breasts and our body normally looks like," she said.
Dimpling or puckering, changes in size or color, discharge from the nipples—even unusual pain, like Sallison experienced—should be brought to the attention of your medical provider, said Cueva.
Clinical exams can also help detect cancer, she says. Not only that, but meeting with a health care provider is a chance to discuss both your overall health and current mammogram recommendations.
Whether and when to have a mammogram has become confusing due to changing, and often conflicting, recommendations, but what is clear is a mammogram's ability to detect changes in the breast not visible in a self or clinical breast exam—as was the case for Sallison. Cueva recommends women take the time to discuss the risks and benefits of mammograms with their provider and follow the guidelines most closely aligned with their needs.
Bringing education and outreach to rural Alaska
In Alaska, geography is often the biggest obstacle when it comes to rural health and education. The Community Health Aide Program (CHAP), with funding from the American Cancer Society and the National Cancer Institute have been able to provide cancer education to women and men in rural communities.
CHAP offers online courses and provides downloadable booklets devoted to breast health and other types of cancer, for those seeking more information.
"This helps provide relevant information when people need it the most," Cueva said. "People don't need to wait for an in-person course."
To make it easier to share stories, CHAP created a digital storytelling section for people to share their cancer experiences with each other as well as other arts-based programming, which Cueva said has been well-received. They help begin a dialogue on a subject many people are hesitant to discuss.
"It's really helping people have more conversations about cancer and screenings and wellness, (and) ways to reduce our risk," Cueva said. "Or, if we're diagnosed, how we may live well along that cancer journey."
This article was produced by the special content department of Alaska Dispatch News in collaboration with ANTHC. Contact the editor, Jamie Gonzales, at email@example.com. The ADN newsroom was not involved in its production.