Joining the Journey Against Breast Cancer

Survivors Launch Organization to Raise Awareness, Promote Early Detection

By Jennifer M. Gangloff

Photography by Fagan Studios

Article contributed by: Rochester Women's Magazine

Patty Allen and Effie Psimos had a deep connection before they even met each other.

In early 2004, Psimos’s hair stylist told her about a client who had just been diagnosed with breast cancer. Psimos, who was diagnosed with the disease a year earlier, had collected a basket of scarves and hats to cover her head when she lost her hair. Her stylist suggested she pass the basket along to someone else in need.

Coincidentally, Allen went to the same stylist. When she was diagnosed with breast cancer and facing chemotherapy, her stylist told her about Psimos’s scarf basket. Allen was eager to reach out to someone who had been on the same journey and could offer insight and support.

And then the very next day, fate struck in the dairy aisle of HyVee. Allen spied a woman she thought was the one her stylist had mentioned the day before. She made short work of introducing herself.

“I was almost frantic about it,” Allen recalls with a laugh.

“She just came out of nowhere,” Psimos says.

Thanks to that chance encounter, Allen and Psimos, both of Rochester, became fast friends in their battle against breast cancer. Little did they know they’d soon be tackling another big challenge – a challenge that they hoped could save lives on the journey against breast cancer.

Finding Inspiration

In September 2004, Psimos participated in the Breast Cancer 3-Day in the Twin Cities to raise funds for the Susan G. Komen Breast Cancer Foundation. And Allen, though bald and fatigued from chemotherapy, joined her friend for the closing ceremony. It was emotional but uplifting, and it left a big impression on the women and their families.

So much so that Psimos’s husband casually suggested doing a walk in Rochester to raise awareness about breast cancer. At first, Allen and Psimos didn’t take it seriously. How could two ladies recently diagnosed with breast cancer tackle such a big project? Impossible!

But they couldn’t just shrug it off. The idea did sound intriguing – and important. Maybe they could pull it off after all. Plus, they had the support of their friend Margie Loprinzi, a registered nurse in the Mayo Clinic’s Women’s Cancer Program. As the three began checking into organizing a breast cancer walk, they realized what a big undertaking it really was, with insurance, permits, routes and refreshments to worry about, among other details.

It became clear that they needed the support of a foundation behind them. So they created one.

Joining Forces

In February 2005, they launched Join the Journey, a Rochester-based nonprofit organization dedicated to raising local awareness about breast cancer. In addition to Allen and Psimos, who are co-presidents, and Loprinzi, who is vice president, they brought in another friend, Nancy Stuart, also of Rochester, as fundraising chair. And dozens of other friends and acquaintances stepped up to help organize the walk.

Journey has also aligned itself with the Women’s Cancer Program. In fact, both Allen and Psimos were invited to be patient advocates for the program. In addition, Join the Journey turned to Dr. Sandhya Pruthi to provide medical expertise.

“We are at an exciting time in learning more about breast cancer prevention,” says Dr. Pruthi, an assistant professor of medicine at the Mayo Clinic College of Medicine and director of the Breast Diagnostic Clinic.

“Breast cancer is the leading cancer diagnosis among women in the United States,” she says. “But the future is promising in the area of research in breast cancer prevention. We’re studying new medications and gaining a better understanding of the causes of breast cancer, and hopefully we can make significant steps toward preventing this disease.”

Through Journey, Allen, Psimos and its other organizers hope to offer programs in the greater Rochester area to teach women about breast cancer prevention and early detection. They’d even like to reach out to high schools, teaching girls about breast health. They envision creating pamphlets, perhaps hosting informational billboards, and, of course, making more scarf baskets and other care packages for women newly diagnosed with cancer. (As for the original scarf basket – it’s already been passed along to two other women.)

“Despite all of the attention about breast cancer, women here are still not getting their mammograms,” Psimos says. “So many people we know pooh-pooh it because they’re young mothers or say they don’t have time.”

“Women are their own worst enemies,” Allen adds. “Breast cancer is very curable if caught early, and wouldn’t it be a shame if they skipped their mammogram.”

Much of what Journey is ultimately able to accomplish will depend on how much money it can raise through the community.

Raising Awareness

The fundraising cornerstone of the organization’s inaugural year is its first 10 Mile Breast Cancer Walk. The walk is being held Sept. 18, timed to coincide with Women’s Cancer 2005, an annual education event for the public run by the Women’s Cancer Program. Walkers must raise a minimum of $50.

Although it doesn’t match the 60-mile Komen walk, even 10 miles can sound daunting to some. But don’t let that keep you away. You can walk any distance you’re comfortable with; it doesn’t have to be the full 10 miles. Just don’t miss the closing ceremonies. Journey promises it’ll be memorable. It’ll feature music, refreshments and inspirational speaker Jeanne Greenfield, a cervical cancer survivor and self-published author.

Part of the proceeds raised from the walk will be used to buy copies of the book Mayo Clinic Guide to Women’s Cancer for women who are newly diagnosed with breast or gynecologic cancers.

“All of the money we raise stays right here in the Rochester community,” Allen notes. “People are happy about that because they’re directly supporting their family, friends and neighbors who have breast cancer.”

Offering Hope

Both Allen and Psimos had already practiced what they’re now preaching about breast cancer prevention. Both women were time-crunched mothers with families. And both got mammograms annually – and they say it’s what helped give them a good prognosis.

Psimos was diagnosed in January 2003 at age 43 after her annual mammogram. Over the next six months, she had a lumpectomy, node dissection because the cancer had spread to two lymph nodes, chemotherapy and radiation. Today she is cancer-free.

“I was very lucky to have great support as I went through all of this,” Psimos says. “Not every woman is so fortunate.”

Allen was diagnosed in January 2004, after her annual mammogram – and also at a young age, 48. She opted for a mastectomy of the affected breast and chemotherapy. She then had a prophylactic mastectomy of her other breast, followed by breast reconstruction. Like Psimos, she is now cancer-free, but she must continue to take medication to help prevent a recurrence.

“I was really glad it had been only a year since my last mammogram,” Allen says. “Everyone thinks if they miss one hour of their life the whole world will come crashing in. But imagine what could have happened to me and my family if I’d skipped my mammogram.”

Through Join the Journey, Allen and Psimos hope other women in the Rochester area are also inspired to have mammograms.

“We hope we can make things better in our town,” Allen says. “I don’t know about the whole world – but wouldn’t that be great.”

Jennifer M. Gangloff, of Rochester, works for MayoClinic.com and is also a freelance writer and editor. She is a 5-year leukemia survivor and her grandmother is a 5-year breast cancer survivor.

For more information

Join the Journey 10-mile Breast Cancer Walk:

When: Sunday, Sept. 18

Time: 9 a.m.

Where: Mayo High School, Rochester, MN

To register or to get more information, contact Join the Journey:

Join the Journey

P.O. Box 8146

Rochester, MN 55903

www.jointhejourney.us

Women’s Cancer 2005

For more information about Women’s Cancer 2005: Merging Science and Care, contact the Mayo Clinic Women’s Cancer Program at 507-284-4300.

Click here to view Rochester Women's Magazine!

Advancing Breast Cancer Research

Researchers are continuing to study better treatments and prevention strategies for breast cancer.

“Although we still don’t know what exactly causes breast cancer, we are making progress,” says Dr. Sandhya Pruthi, an assistant professor of medicine at the Mayo Clinic College of Medicine and director of the Breast Diagnostic Clinic. “For instance, there’s some evidence that our environment – the way we live – may be interacting with our genes. Research has shown that we can make some lifestyle changes to reduce breast cancer risk. That includes exercising at least three times a week, preventing weight gain after menopause, limiting alcohol to no more than one drink day, and avoiding long term hormone therapy.”

·    Exemestane for women at increased risk

This trial, known as the ExCel research study (www.excelstudy.com), will investigate whether exemestane (Aromasin) can prevent breast cancer in postmenopausal women who are at high risk. Exemestane stops the production of estrogen and its supply to precancerous and cancerous cells, thus preventing them from growing. The study will enroll some 4,500 women at sites around the world.

·    Exemestane’s effect on breast density

Some research suggests that breast cancer may be associated with breast density. This trial will study whether exemestane reduces breast density in postmenopausal women at increased risk of breast cancer.

·    Evaluation of nipple aspirate fluid

In this investigation, fluid taken from the nipples will be analyzed for certain estrogen biomarkers, which may help researchers learn why some women at high risk go on to develop breast cancer. This study is open to women at high risk and those newly diagnosed with breast cancer.

For more information about these clinical trials or enrollment eligibility, contact the Mayo Clinic Breast Cancer Prevention Office at 507-538-1115.

 

Breast Cancer Screening Guidelines

Here are general screening guidelines endorsed by the American Cancer Society. Always talk to your doctor about what’s best for you.

·    Mammogram: Annually starting at age 40.

·    Clinical breast exam: Every 3 years for women 20-39; annually for women 40 and older.

·    Breast self-exam: Monthly starting at age 20.

If you’re at higher risk of breast cancer, you may need earlier and more frequent screening, or screening with other methods, such as breast MRI or ultrasound. If you’re a woman at high risk with two or more close relatives with breast cancer, you may want to consider meeting with a genetic counselor to discuss the role of testing for breast cancer gene mutations, says Dr. Sandhya Pruthi, an assistant professor of medicine at the Mayo Clinic College of Medicine and director of the Breast Diagnostic Clinic.

If you lack health insurance or can’t afford breast cancer screening services, you may be eligible for free checks offered through Minnesota’s SAGE screening program. You can find more information here:

SAGE: Minnesota Cancer Screening Program

www.health.state.mn.us/
divs/hpcd/ccs/mbcccp.htm

888-643-2584



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