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Support groups help make treatment for breast cancer patients more affordable

Watertown Daily Times - 10/14/2018

Oct. 14--When a patient is diagnosed with breast cancer, the person's first thought isn't always about health, but rather, how to afford being sick.

Treatment can cost thousands of dollars depending on insurance coverage -- there is time away from work and often travel to medical appointments. Over her lifetime, one in eight women in the United States faces a breast cancer diagnosis, and support organizations for patients and survivors continue to grow.

October is Breast Cancer Awareness Month and throughout the north country organizations, municipalities and hospitals are hanging pink ribbons and driving conversation toward making treatment and care affordable.

Helen W. Wood, 46, currently in remission, found a lump on her right breast last year. After being examined at Elizabeth Wende Breast Care in Rochester, her fear was confirmed -- she had Stage 3 breast cancer.

"The doctor told me I needed to start thinking about a double mastectomy and chemotherapy," Ms. Wood, Ogdensburg, said.

With her 54 weeks of chemo too intense for her to drive herself, her daughter would drive her to and from Rochester for treatment, forcing both of them to work significantly less than they were used to. Even so, Ms. Wood said she needed to work at the hair salon she owns at least a few days per week for her morale.

"I really wanted to work through it to keep myself feeling normal," she said.

With both members of the household barely working, Ms. Wood said she was financially nervous.

At first, she said she went to the Department of Social Services to seek out financial assistance, but was told she would have to completely stop working to gain funds. It wasn't until she found the Gouverneur Breast Cancer Fund that Ms. Wood said she had some hope.

Terry A. Pistolesi, a member of the Gouverneur Breast Cancer Fund's board of directors, said the cancer fund helps more with payments outside of the hospital room.

"Our main focus is to assist the patient so that they don't have to make the financial decision of 'Will I feed my kids or will I pay for my prescription?'" Mrs. Pistolesi said.

Patients, as well as their providers, fill out an application to receive support from the organization, and once received, Mrs. Pistolesi said the fund sends the person $500 to use toward transportation expenses. Afterward, the organization determines what other financial assistance the patient needs. Patients with breast cancer in Jefferson, Lewis, St. Lawrence and Franklin counties are all eligible to apply, and funding is completely through fundraising.

Mortgage payments, rent and groceries are a few things Mrs. Pistolesi mentioned the fund has helped with.

"I would send them all of my monthly bills -- car payment, utilities and also benefits for gas, food and help with traveling expenses as well," Ms. Wood said. "I would've lost everything without them."

Mrs. Pistolesi said Ms. Wood's scenario is common, and the organization will go beyond the typical expenses if needed.

"We had a woman call us one day, and she was in complete tears," she said. "She was a single mom unable to qualify for disability and she had nothing to feed her son. She said she just needed a couple days' worth of food because her food stamps kick in soon. I never felt so helpless...but we called the Price Chopper in her town and they had a $250 gift card waiting for her."

She also said the organization has bought a woman new tires so she could pass inspection and paid for a family's heat for an entire winter.

Outside of their own facility, the organization provides support for all the quad-county areas' cancer centers and Syracuse. Some of this support is through gift bags given to patients after treatments, which contain phone numbers of services and a handbook that gives details about breast cancer from diagnosis to remission.

With the actual medical expenses, Mrs. Pistolesi said they are always willing to help, but there are other programs in the area who focus primarily on that.

One of those programs is Cancer Services of the North Country, with offices in St. Lawrence, Jefferson and Lewis counties that are subcontracted through Oswego Community Opportunities.

Primarily funded through the New York State Department of Health, it helps people get both screenings and treatments for several forms of cancer, including breast.

Jodi L. Regan, the cancer services program coordinator of St. Lawrence County, said the program offers free breast screenings for people ages 40 to 64 who are uninsured or underinsured. This includes a clinical breast exam with a medical provider and a mammogram, as well as diagnostic testing if there is a possible cancerous finding from the screening results.

"After a positive finding in the screening, we are trained to help enroll them in a special insurance program through New York State for anyone who has been diagnosed with breast, colon or prostate cancers," Ms. Regan said. "We don't just say 'See ya later'; we have a plan."

Because the program is funded by the state, it is required to follow state guidelines. For men and women under 40, the organization can use the small amount of private funding received to help clients get a free mammogram. Ms. Regan said if the screening comes back positive, the organization can request the state to use state funding for the patient's further treatment.

Additionally, Ms. Regan said the organization usually does special services to honor Breast Cancer Awareness Month, but the state recently combined many of the county cancer service programs, on top of switching to a new grant.

"We are in the process of combining everything, so we weren't able to rock-and-roll with the offers we usually have going on this month," she said.

Ms. Regan said they typically offer "one-stop shopping," at local hospitals where once a week there would be extended hours with both clinical screenings and mammograms done on the same day. Sometimes, she said, a provider will offer pap smears as well.

Carolyn D. Handville, the coordinator of cancer services of the north country at OCO, said that aside from not having special programs, it is making the transition as "seamless as possible" for patients.

Ms. Handville said she understands how imperative it is to have these state-funded programs for patients.

"For folks that are uninsured, they aren't getting those screenings done," Ms. Handville said. "Having to choose between putting a roof over your head and a screening, I think most people would choose to put their own health aside."

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