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'Not a death sentence'

Though breast cancer remains a threat, survival rates are improving

Though breast cancer remains a threat, survival rates are improving

October 06, 2003|by KATE COLEMAN

katec@herald-mail.com

The American Cancer Society estimates that more than 200,000 cases of breast cancer will be diagnosed this year in the United States.

The organization predicts there will be more than 39,000 deaths from breast cancer this year.

But there is good news - despite these numbers.

Since 1995, breast cancer mortality has declined by more than 3.4 percent annually, the American Cancer Society reports.

Musa Mayer, author and 14-year breast cancer survivor, also cites gains. In the 1970s, the rate of survival at five years after a diagnosis of metastatic breast cancer, meaning it spreads through the body, was 10 percent. The most recent numbers show a survival rate of 40 percent, she says.

"Women need to know that metastatic breast cancer is not an instant death sentence," she says.

Mayer, 60, will share that message in Hagerstown on Wednesday, Oct. 8, when she speaks at the Celebration of Life Survivors Party, Breast Cancer Awareness-Cumberland Valley Inc.'s annual gathering of breast cancer survivors and friends.

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A little more than 14 years ago, Mayer's life and work changed.

She already had stepped away from a decade-long career as a mental health counselor to pursue her dream of becoming a writer. She was about to complete a graduate writing program at Columbia University. She had a couple of novel manuscripts in her desk. Her first book, "Night Studio: A Memoir of Philip Guston," the story of her artist father, had been published recently.

Then, in April 1989, Mayer was diagnosed with breast cancer.

In her search to find answers to her own questions about treatment options and living with cancer, Mayer learned about the disease and how to cope with it - emotionally as well as medically.

She learned the value of support - initially through a group she joined halfway through her chemotherapy, later through online mailing lists such as www.bcmets.org and www.bclist.org.

Mayer also learned that very few people who work as advocates focus specifically on metastatic cancer.

All the literature - especially at this time of year, with October pegged as Breast Cancer Awareness Month - stresses the good news about early detection and going on with life.

"It's all very pink," Mayer says, referring to the pink ribbons and other features of breast cancer awareness campaigns.

"Reaching out to women with metastatic breast cancer is really important," Mayer says.

The subtitle of "After Breast Cancer," her latest book, is "Answers to the Questions You're Afraid to Ask."

Those answers include information about follow-up testing, which may not provide more solid evidence: "Except for mammography," Mayer says, research shows no survival or longevity benefit from follow-up testing after treatment for primary breast cancer. She's talking about bone scans, tumor markers, chest X-rays, and all manner of scans. Many of the tests produce false positive results, contributing to more worry and fear, Mayer says.

She encourages vigilance. Her own breast cancer diagnosis was delayed for a year when she initially was told not to worry.

But she doesn't want women to undergo unnecessary procedures if their effectiveness is not supported by scientific evidence.

A graduate of the National Breast Cancer Coalition's science training program for advocates, Mayer serves as a Patient Consultant to the U.S. Food and Drug Administration's Cancer Drug Development Program, and is a voting patient representative on that agency's Oncologic Drugs Advisory Committee.

"I see myself as a translator between patient experience and complex scientific information."

Mayer wants people to have good information so they can make good decisions.

While metastatic breast cancer is systemic and incurable, it is treatable, she says.

It does not have to be a death sentence.

Events are scheduled throughout October.

October is Breast Cancer Awareness Month

The following are among events and activities sponsored by Breast Cancer Awareness-Cumberland Valley Inc. (formerly Y-ME):

Saturday, Oct. 4

9 a.m. to 3 p.m.

Hopeline Training Session

Peer counselor training for breast cancer survivors will be held at Western Maryland Hospital Center, Hagerstown.

Wednesday, Oct. 8

Survivors' signature page in The Herald-Mail.

Noon - Lunch and speaker for survivors and guests at Waynesboro (Pa.) Country Club.

6 p.m. - Celebration of Life Survivors Party; Four Points Sheraton on the Dual Highway in Hagers-town.

Musa Mayer will speak. Reservations are required. Free for breast cancer survivors; $10 for first guest; $20 for additional guests.

Friday, Oct. 10

Valley Mall Senior Fair

Breast cancer information and free pink ribbons.

Monday, Oct. 13

Self-stick package labels with program information in The Herald-Mail.

7 p.m. - Washington County Breast Cancer Information Group, John R. Marsh Cancer Center. Survivors and guests are welcome to share their experiences, questions and thoughts on living with breast cancer.

Friday, Oct. 17

Pink Ribbon Day: Volunteers will pin on the pink at area businesses.

Parking meters and trees in downtown Hagers-town will be decked out with pink ribbons in an effort to increase breast cancer awareness. Remember to put money in the meter.

Call the Breast Cancer Awareness-Cumberland Valley Inc. office to buy a pink bandana for your company's casual day. Cost per bandana is $5.

Saturday, Oct. 18

10 a.m. to 2 p.m.

Camp Hope at Western Maryland Hospital Center is a free day of fun, relaxation, crafts, information, support and food for survivors. Registration required. Call 301-791-5843.

Saturday, Oct. 25

10 a.m. to noon

Community Step 'n Stride Against Breast Cancer: five-mile walk and/or aerobics with individual and team participation.

Bring your dog to walk with you and receive a "doggie bag" with your pet's $25 registration.

For information, call 301-791-5843 or 1-800-963-010, or go to www.hopeforu.org on the Web.

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