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Saving sisters

Langley woman participates in national breast cancer study

LANGLEY — Born nearly a decade after her big sisters, Marilynn Norby spent the first few years of her life toddling behind, looking up in awe and thinking the two were the smartest, strongest and coolest kids around.

Most importantly, they seemed invincible.

The girls shared toys, sisterly advice, a home and a common gene pool.

The one thing Norby didn’t share with her sisters was the gene disposition that would lead to breast cancer many years later.

Today, at age 57, Norby is the only one left of the trio. Both her sisters, Linda and Gene have died of breast cancer.

“Gene was only 45 when she was diagnosed. She kept it from us. She lived in California. She was 55 when she died,” Norby said.

“Linda’s came out of the blue,” Norby recalled.

Linda’s cancer was different from the cancer that had taken away her sister Gene — much more aggressive.

It was a form called inflammatory breast cancer. It occurs in sheets or nests, rather than bumps that women are nowadays trained to look for and spot.

“Within four months — from diagnosis to death — she was gone,” Norby said.

That was a little over two years ago.

A sense

of empowerment

Just before Norby found out about

Linda’s cancer, she joined the Sister Study.

The Sister Study is the only long-term study of women aged 35 to 74 who have had a sister with breast cancer. The national study seeks to learn how environment and genes affect someone’s chances of getting breast cancer.

Researchers invited 50,000 women with sisters who had breast cancer — but who did not have breast cancer themselves — to participate in the study.

“It gives me a sense of power and usefulness,” Norby said.

The in-depth study covers issues ranging from environmental to hereditary factors, as well as suspected causes for the disease.

Norby has given blood samples, participated in gene studies, provided dust samples of her home and participated in extensive interviews.

“They want to know things like how far was your house from the main highway,” Norby said. “Since sisters usually have grown up together and share the same environmental and genetic factors, they are looking for common themes.”

A different family portrait

She has also learned much through the study. Norby was tested for the gene mutation that caused breast cancer in her sisters and her results showed that she was negative for the gene mutation.

“However, it doesn’t explain why there is a high occurrence in my family,” she said.

Norby also studied her family’s health history, and she learned that breast cancer had occurred unusually often in her family.

“I knew my mom’s sister had it. Some cousins on my dad’s side had early onset breast cancer,” she said. “It really gave me a map of my family.”

Sometimes, it’s not easy to gather the information.

“Only a generation or two ago, it wasn’t talked about. An aunt would go away for a while, or just die. Families didn’t talk about it,” Norby said.

Being persistent pays off, she added.

“But those are your links,” she said.

Knowledge is power

Dealing with the disease openly without being intimidated is very important, she said. “Linda and I discussed Gene’s breast cancer, but we weren’t afraid.”

Education is power. It is important for women to know about the different types of cancer.

“It’s not always a lump,” she said.

The most common forms of breast cancer originate in either the breast’s milk ducts, ductal carcinoma, or lobules, lobular carcinoma.

Less common types of breast cancer include inflammatory breast cancer, a rare but aggressive type of breast cancer; Mucinous (colloid) carcinoma, a type in which the cancer cells produce mucus and grow into a jelly-like tumor; Sarcoma, a tumor that develops in the connective tissue of the breast, as well as about a dozen other forms.

Norby also said eating right and a healthy lifestyle can make a difference.

“I increased my exercise, because I know it decreases my chances by 30 percent,” Norby said.

However, living right is not insurance.

“Linda had a perfectly healthy lifestyle,” Norby said. “It was just the last thing Linda and I ever thought would happen.”

Center of the family’s universe

Norby said it is important to be cautious and not only go to regular health check-ups, but also to make it a point to discuss suspicions, fears and family history with your health provider.

Women tend to put themselves last on the priority list when it comes to health and wellness. But as the centers of their families and main nurturers, they leave a crater of emptiness within their families when they succumb to disease.

It’s something Norby has lived.

“I lost my mom at 11 to cancer,” Norby said. “We just fell apart.”

Prevention and early detection is the best weapon to beat the disease until studies like the Sister Study bear fruit and a cure is found.

Help on Whidbey

As part of Breast Cancer Awareness Month, Friends of Friends Medical Support Fund will kick off a new program to help women on South Whidbey get breast-cancer screenings, regardless of their ability to pay.

Soroptimists International of South Whidbey has donated the funds to Friends of Friends for this program.

“With this program we hope to insure that any woman living on South Whidbey who needs a mammogram, either for routine screening or diagnostic purposes, can get one without concern for cost, whether or not she has insurance,” said Patty Willson, a volunteer project coordinator and Friends of Friends advisory board member.

In partnership with Whidbey General Hospital and Radia Medical Imaging, the mammograms will be provided at Whidbey General Hospital or Whidbey General South.

The test must be ordered by a physician or health practitioner and must be part of a complete breast exam by the practitioner. Friends of Friends will cover any uncovered costs of the office visit required to order a mammography.

The program began Oct. 1. If you cannot otherwise afford a mammogram, contact Friends of Friends at PO Box 812, Langley, WA 98260, or your healthcare provider.

No one should go without because of insurance issues, Norby said. A number of organizations help pay for mammograms or provide free tests.

Besides Friends of Friends, another organization, the Everett-based “Positive Women’s Wellness Center,” serves islanders if they are financially eligible.

Becoming the family matriarch

Two years after the death of her sister Linda, Norby relentlessly reminds her sisters’ daughters to get regular check-ups and mammograms.

“My sister was the matriarch of the family. Now I try to step into her shoes,” Norby said.

“I can’t replace her, but I can do my best to help.”

The Sister Study is also looking for more women to participate. The study needs 8,000 more women to reach its goal of 50,000 participants nationwide.

Minority women are especially encouraged to participate.

To find out more or to enroll in the Sister Study, go to www.sisterstudy.org or call 1877-474-7837.

“Do it for your nieces, granddaughters and future generations,” Norby said.

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