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A Family Legacy

Sue Jalas sits at her sewing machine, expertly sewing a seam while making alterations to a shirt.

Her mother passed along the skills Sue has used her whole life to make clothes for herself and her children. Her family knows that in just a few minutes, Sue can do magic, bringing up a hem or taking in a blouse to make it fit just right.

“This has always been my stress relief,” says Sue, as her sewing machine hums along. “My mother was a beautiful seamstress and she was so good about teaching me.”

But Sue’s mother also may have passed along something else.

Her inheritance

Sue, a survivor of ovarian cancer, learned that she carries a genetic mutation that puts her at high risk for both ovarian and breast cancer. And two of her daughters and one of her granddaughters share the family legacy.

For this family, the knowledge is difficult, but it gives them power, says Sue. Cancer may run in their family, but they know what to do, she says.

“It’s hard when you hear the ‘c-word’ as a patient. You hear that word and you go numb,” says Sue, carefully placing pins along the seam. “We have a genetic disease so we know there is something we can do about it.”

The 64-year-old Larchwood, Iowa, woman always kind of assumed that cancer could be part of her future. Her father and his nine siblings all died of cancer and there was plenty of the disease on her mother’s side of the family too. She even lost young cousins to cancer when she was a child.

Sue’s father died of prostate cancer and her mother had breast cancer that metastasized, moving into her lungs and brain. Because of the family history, she has always been vigilant about screening tests.

The “C-word”

Sue discovered she had ovarian cancer in August 2010, just two months after her annual exam had been clear of any sign of disease. Her doctors, who had been treating her for what she thought was a urinary tract infection, learned that she had a fast-growing type of cancer.

“I see cancer as something that is insidious, evil and sneaky,” Sue says. “It doesn’t show itself until it’s ready to. I knew if I took my eye off it for a minute it will kill me fast.”

Knowing that she was overwhelmed by her diagnosis, Sue brought her daughter and son-in-law, who is a physician’s assistant, to come with her as she talked to gynecologic oncologist Dr. Maria Bell about what would happen next.

Dr. Bell recommended surgery and a clinical trial to attack her aggressive ovarian cancer. Surgery would be followed by chemotherapy, including participation in a clinical trial of Avastin, a drug that has shown signs of slowing cancer growth both during and after chemotherapy.

Sue also had genetic testing done and learned that she tested positive for the BRCA 2 genetic mutation. This gene, which can come from either the mother or father’s side, puts a woman at high risk for breast and ovarian cancer, says Dr. Bell.

Two of Sue’s three adult daughters and one 21-year-old granddaughter also tested positive for the genetic mutation. Dr. Bell says that the knowledge of the results gives the women a chance to take action, such as extra screenings for breast cancer. She recommends that women who test positive take medications to stop ovulation, such as birth control pills.

“Women who are BRCA positive, and who have been on birth control pills greater than five years have a 60 percent reduction in the development of ovarian cancer,” Dr. Bell says.

When they are ready to have children, they can temporarily stop the medication, the doctor says. After a patient with this genetic mutation is finished having children, Dr. Bell would recommend removing the ovaries and fallopian tubes to prevent the chance of cancer developing.

Taking action

When Sue’s treatment for her ovarian cancer was complete and successful, she decided to have a bilateral mastectomy to prevent the chance of breast cancer. Her daughters both have opted for preventative surgery. One has done both a hysterectomy and mastectomy while the other is still in the process of getting the surgeries done.

“I call it a gift to know that we have this genetic mutation,” says Sue. “We pray that they may find a cure or find some new therapies in the coming years.”

Since getting her clean bill of health, Sue taken part in Sanford’s embrace Cancer Survivorship program, even joining a group of local survivors. The group of women who have all been through ovarian cancer support each other and have developed deep friendships.

She also began doing research into the health histories of her extended family. She has passed that information on to Sanford researchers in hopes that it might help unlock the secrets of why some families face this mutation.

As a member of a clinical study whose case will be followed by scientists in the coming years, she tries to stay as healthy as possible in hopes that her treatment and her life may benefit other cancer patients. Everything scientists can learn will help other families like hers, she says.

“From day one, I’ve thought that if I have to have this disease, let’s use it to help other people,” says Sue. “My life is like a book, and this in a new chapter in my journey. We just hope to use each chapter to do the good we can.”

Posted Date: November 2012