Patients push for recognition

Groups such as Compass offer help, hope for women with Stage IV breast cancer

October 16, 2008|By Susan Gvozdas | Susan Gvozdas,Special to The Baltimore Sun

Rhonda Rhodes of Annapolis rejoiced three weeks ago when she heard the results of her latest round of breast cancer treatment. The cancer that had returned in February and spread to her brain, lungs, kidney, skin and lymph nodes has responded to the radiation and chemotherapy.

Although she still has a tumor around her kidney, it shrank, and there is no evidence of other tumors, Rhodes said.

The news has not quite ended the roller-coaster ride that started when she was first diagnosed with breast cancer in November 2006. After she had a double mastectomy, radiation and chemotherapy, Rhodes thought she had beaten cancer.

"It never dawned on me that it would come back," Rhodes said.

Rhodes sought solace this year among a group of women like her who have Stage IV breast cancer - cancer that has metastasized to other parts of the body. Formed last year at Anne Arundel Medical Center, Compass has been helping women who feel lost once their breast cancer diagnosis becomes terminal.

"Women who have metastatic breast cancer are really outsiders looking in," Rhodes said. "We're battling this for the rest of our lives."

Compass has grown to 28 members and this week succeeded in pushing for more recognition for women who feel they are being passed over for medical research dollars that are being concentrated on screenings, prevention and early-stage treatment. Gov. Martin O'Malley and Annapolis Mayor Ellen O. Moyer issued proclamations making Oct. 13 Metastatic Breast Cancer Awareness Day in Maryland and Annapolis. They join 23 cities and six states and cities that have done the same.

Compass will hold a fundraiser Nov. 20 to start a metastatic breast cancer research fund that can be used to help prolong women's lives. Members hope that what they call "BC mets" will be treated as a chronic condition that can be controlled by a cocktail of drugs, much the way those who are HIV-positive are treated, said Dian "CJ" Corneliussen-James, co-founder of Compass.

Corneliussen-James said that the group hopes to raise $100,000 to $150,000 in the next few years to donate to young researchers who are struggling for money.

Corneliussen-James, 57, said Compass was founded in November 2007, for late-stage breast cancer patients who feel uncomfortable speaking at breast cancer support groups. Many don't want to discourage those with early-stage breast cancer. In some cases, breast cancer groups have asked metastatic breast cancer patients not to come, she said.

Those feelings of isolation have been exacerbated by what Compass members say has been too much attention on research targeted toward early-stage breast cancer patients.

Groups such as the nonprofit Susan G. Komen for the Cure have dedicated the majority of their funds to prevention or fighting cancer before it has spread to other parts of the body. Women who are in Stage IV cancer have been lobbying for that to change, said Avis Halberstadt, a Compass member who lives in Annapolis. Last year, she was the chairwoman for the Komen Race for the Cure in Maryland.

Komen for the Cure has responded to women like Halberstadt by dedicating $100 million on Sept. 30 to fast-track research for late-stage breast cancer patients.

"That is a shift in the attention that metastatic breast cancer patients have received," said Patrick Drabinski, spokesman for the Maryland affiliate of Komen for the Cure.

Halberstadt, 62, is a 10-year survivor of breast cancer. She didn't realize it had metastasized until last year, when doctors discovered a breast cancer lesion on her spine. Doctors had been treating Halberstadt for stomach cancer, which had developed separately from her breast cancer. Although her breast cancer is considered dormant, she still must take medications to prevent it from spreading.

Halberstadt said she has learned to live with cancer and stay positive.

"Some of us are able to lead normal lives, and we want to help others in our community who aren't as lucky," she said.

About 40,000 men and women die each year of metastatic breast cancer, according to the National Cancer Institute. Women with Stage IV breast cancer typically have a grim prognosis - two to three years. But that is changing, said Dr. Barry Meisenberg, director of the Geaton and JoAnn DeCesaris Cancer Institute at the medical center. Women are living longer with new treatments designed to halt tumor growth, he said.

Rhodes hopes news of the proclamations, the support groups and the increased focus on research will show mets patients that they are no longer being ignored, Rhodes said.

"We want other women to know they're not alone," Rhodes said.

IF YOU GO

The benefit will begin with a silent auction at 6:30 p.m. Nov. 20 at St. Anne's Parish at Church Circle in Annapolis. The organ concert will follow at 7:45 p.m. Tickets, which cost $28, can be bought through Maryland Hall for the Creative Arts.

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