A note from Liz Johnson, Journal News editor:
Our first story in our October series on breast cancer awareness was written by Linda Lombroso and publishes today, Oct. 2, 2011. Rica Mendes, our Battling Breast Cancer blogger, will be leading conversations about different aspects of this story — and using it for other blog posts throughout the week. But after the jump, you’ll find the story in its entirety, should you like to see how it was presented our Sunday Life section in The Journal News.
When Clara Castillo learned she needed a double mastectomy last year, she worried that reconstructive surgery was out of the question. For Silvia Flores, there were always new excuses to delay going to the doctor after she found a lump in her breast.
The reason for both women’s anxiety? Neither had health insurance.
The good news, for both Castillo, right, and Flores — and families across the area facing similar dilemmas — is that there are free and low-cost services available locally for breast-cancer screening, treatment and support, including mammograms, rides to medical appointments and care from specialists affiliated with top hospitals in the Lower Hudson Valley.
After the jump, their stories.
By Linda Lombroso
Silvia Flores had no health insurance when she found a lump in her breast last year. Flores, 47, who lives in Rye Brook, had kept up with regular mammograms, so she wasn’t too concerned, especially since she’d had two benign tumors in her breasts when she was a teenager.
When she discovered this lump, her son was getting ready to go to college and so she put off further tests and potential surgery.
But Flores’ husband pushed her. “He said, ‘By the end of the year I want you to have that thing removed from your body,’ ’’ she recalls.
Her sister told her about Open Door Family Medical Centers, which offer health care on a sliding scale for patients without insurance. On her first visit, in January, Flores was sent for a mammogram, which was quickly followed by a biopsy. “They called me two days later and said, ‘It’s not good news. It’s cancer,’ ’’ she says.
As bad as the news was, Flores, who worked in her husband’s auto-body shop, couldn’t think about treatment without worrying how she would pay for it.
“When we found out, my husband said, ‘We’re going to sell the car, we’re going to sell the house.’ He was planning to sell everything,’’ she says.
A social worker assured Flores there was a program that would cover her expenses. “I said, ‘I don’t know if we qualify.’”
In early February, Flores had a lumpectomy and 19 lymph nodes removed. Her surgery, performed by breast surgeon Dr. Peter Fauci at Sound Shore Medical Center in New Rochelle, and her subsequent chemotherapy and radiation treatments — along with the medication she’ll continue to take for five years — were covered by the New York State Cancer Services Program and the Medicaid Cancer Treatment Program, both arranged through Open Door.
“We didn’t get any bills,’’ says Flores. “I checked every day, and nothing came.”
The Cancer Services Program, recently reorganized as a partnership in the Hudson Valley, offers breast, cervical and colorectal cancer screenings at no cost to women and men without insurance, or whose insurance does not cover the cost of these screenings.
Although the program has income eligibility requirements for screening tests, those who are diagnosed with breast cancer can get free treatment through the Medicaid Cancer Treatment Program, provided they are legal New York residents.
“What’s wonderful about this program is that it puts together a continuum of care for uninsured patients,’’ says Lindsay Farrell, president and CEO of Open Door. “This is all as a result of breast-cancer advocacy, thanks to Susan G. Komen and all the organizations out there working to improve early detection and screening, and treatment and services for women in general.”
Unlike traditional Medicaid, patients may have a relatively high household income and still qualify for the program.
Yesly Sandoval, care coordinator in Rockland for the program, says patients are relieved to learn of the option.
“A lot of people are afraid of getting diagnosed because, ‘OK, if I have a diagnosis, what’s going to happen to me now?’,” says Sandoval, who adds that it doesn’t take long to get an approval for treatment.
“Even if someone is currently not ‘low income’ — maybe they recently lost their job — they can still receive referrals, information and support through the Cancer Services Program,’’ says Lauren Moore, director of the American Cancer Society’s Patient Service Center in White Plains.
The cancer society also offers a Health Insurance Assistance Team, which consults with patients over the phone to assess their eligibility for state programs, says Moore.
Eligible patients who are diagnosed by their own doctors can also get free treatment for breast and cervical cancer through the Medicaid Cancer Treatment Program.
“We had a woman who had recently been divorced, and her husband had dropped her from his health plan, so she had no health insurance coverage,’’ says Sharon Bisner, director of the Clinical Care Unit of the Cancer Services Program in Albany. “She was able to enroll, and she wasn’t screened by our program, because she had been diagnosed when she had health insurance.”
The caveat, adds Bisner, is that treatment must be done by a participating Medicaid provider.
One of those providers is Yonkers breast surgeon Dr. Martin Wertkin, who charges a reduced fee for patients who come in through the program — and whose staff is happy to answer questions by phone. “I’m surprised, quite frankly, that there aren’t more breast surgeons willing to participate,’’ he says. “No matter how busy you are, I don’t see why you can’t take care of some of these patients.”
Dr. Martin Wertkin. (Carucha L. Meuse / The Journal News )
Many doctors don’t participate in the Cancer Services Program because it has a lower reimbursement rate, explains Open Door’s Farrell.
Two other breast surgeons affiliated with the program — Dr. Patricia Joseph, at Nyack Hospital, and Dr. Karen Karsif, at Good Samaritan in Suffern — have made it their priority to raise awareness about early detection and the availability of free and low-cost services for screening and treatment.
Both their hospitals regularly offer free breast cancer screenings for women without insurance. Karsif also sees patients who come directly to her office with concerns.
Dr. Karen Karsif looks at X-rays in her Suffern office. ( Peter Carr / The Journal News )
“I had two patients, one who needed a mammogram and the other who actually had a mammogram and needed a biopsy, and neither one had insurance,’’ she says. “If somebody feels a lump and they’re understandably anxious and they don’t want to wait, they can come to me. What I usually do for people who don’t have insurance, I give them a very reduced rate for an office visit, and then use the Cancer Services Program for imaging or whatever they need.”
Women tend to push their health-care needs aside, especially when they’re worrying about how to pay the mortgage, says Joseph. “It’s very difficult to raise awareness to get them to come in for their initial screening, and then it’s a double whammy if we find something,’’ she says. “They’re basically coming in to get screened assuming we’re not going to find anything. And when we do find something, it’s even worse because they have no resources.”
But Joseph (right in a photo by Mark Vergari /The Journal News) and her team work quickly to make sure patients get treated. “The Cancer Services partnership is extremely aggressive in getting people the coverage they need so we can treat them, not just surgically, but with medical oncology, radiation therapy, whatever they need,” she says.
Clara Castillo, 52, who lives in North Salem, was already familiar with the importance of early detection when she was diagnosed with breast cancer in February 2010. As a childcare worker without health insurance, she got regular checkups at Open Door in Mount Kisco, and was diligent about annual mammograms.
She was surprised, she says, when her last mammogram showed something suspicious in her left breast — and subsequent biopsies revealed early-stage cancer in both breasts. Although Castillo was relieved she’d caught the cancer early, she worried about how she would afford treatment. “If they told me I had to pay for the reconstruction, I wouldn’t have done it,’’ she says.
From left, Dr. Samantha Rai and Clara Castillo, 52, at the Mount Kisco Open Door Medical Center. ( Ricky Flores / The Journal News )
But she paid nothing for her double mastectomy and reconstruction, both performed at Northern Westchester Hospital in Mount Kisco. Castillo’s follow-up care, which includes twice-yearly visits with her oncologist, is coordinated by her primary-care physician at Open Door in Mount Kisco, Dr. Samantha Rai.
Flores, the Rye Brook patient who had her care arranged through the Open Door facility in Port Chester, had chemotherapy at Sound Shore Medical Center, where she saw an oncologist who also participated in the Cancer Services Program.
But medical care isn’t the only financial consideration for patients dealing with breast cancer. Although Flores was well enough to drive herself to treatment, cancer patients often need rides — which the American Cancer Society’s Road to Recovery program offers for free — and help dealing with the hair loss that often comes as a result of chemotherapy.
For Flores, losing her long, wavy hair was one of the most traumatic parts of battling breast cancer. “You don’t see the cancer inside, you just know because the doctor is telling you,’’ she says. “When you realize you don’t have hair, you know ‘This is really happening to me.’ ”
Flores, who also lost her eyelashes and eyebrows, learned to do her makeup at one of the cancer society’s free Look Good…Feel Better programs, which help women learn to cope with the appearance-related side effects of chemotherapy and radiation.
She picked up a wig at a discount shop in Danbury, Conn., but the cancer society also runs a free wig program, with fittings at sites throughout the Lower Hudson Valley.
Those wigs, says breast-cancer patient Rica Mendes, are surprisingly good.
Mendes, 37, who lives in South Salem and will be blogging for LoHud.com all month, was diagnosed with breast cancer in July. She had a double mastectomy and plans to shave her head in mid-October, before her hair falls out from chemotherapy treatments. Although she works for a start-up and has health insurance, her plan only covers 50 percent of the cost of a wig, up to $350 — and good wigs tend to be expensive, she says. Mendes doubted she would even be able to afford the co-payment.
“Money is ridiculously tight,’’ she says.
So she went to see Maribel Palacios, who helps patients get fitted with wigs at the cancer society’s offices in White Plains. The selection, she says, was impressive.
“I was pleasantly surprised that they didn’t all look like my grandmother’s wig,’’ says Mendes. “That’s what I was afraid of. When you think of breast cancer and wigs, you think of all these goofy-looking short, cropped wigs that look — especially on younger women — inappropriate for my age.”
Mendes left with a long blond wig from the Raquel Welch collection — and she didn’t pay a thing.
In fact, says Moore, the cancer society offers many other free programs, including Hope Lodge, which has 31 locations across the United States. Eligible patients and their families can stay in the lodges when treatment takes them out of town (there’s one in Manhattan). Its Patient Navigation program connects patients to needed information quickly — in multiple languages.
“As much as the cancer is complicated, the health-care system is complicated, so navigators are helping them to remove barriers and access care,’’ says Moore.
Doctors and patient advocates say it’s critical not to let concerns about finances stand in the way of getting screened or treated for breast cancer.
“A lot of people, both in and out of the health profession, don’t realize that breast cancer is different than other diseases because it has so much fear and anxiety associated with it,’’ says Good Samaritan’s Dr. Karsif.
“For many women, it’s their worst nightmare, worse than other things which might be more serious. That leads to a lot of evasion, a lot of fatalism, women saying, ‘Why should I bother? If I get breast cancer, I’m going to die,’ which isn’t true.”
Mendes, whose cancer showed up on her first mammogram, says it was detected at a “ridiculously early stage.”
“The reality is that most breast cancers that are detected by imaging — by mammography, by ultrasound — are curable because they’re really small,’’ says Karsif. “By the time they reach a stage where they can be felt, there’s a higher chance the cancer may have spread.”
Flores regrets waiting six months to have doctors check into the lump she discovered last year. She has an 18-year-old daughter, and is already talking to her about the importance of monthly breast exams and the need to be vigilant in the fight against breast cancer.
“We know when we detect it early through these screening mechanisms, we find things when they’re so small, no one can feel them,’’ says Nyack Hospital’s Dr. Joseph. “If we can find them on the screening tests, then the cure rates approach 100 percent.”
Here’s a list of of the resources:
The American Cancer Society: The website offers information on managing insurance issues and understanding financial and legal matters. Help and support, including information on the free wig program and rides to treatment, is available by phone 24 hours a day. www.cancer.org or 800-227-2345
Look Good…Feel Better: The program, which offers free products and lessons on makeup application, is run by the American Cancer Society. Find a local site at www.lookgoodfeelbetter.org or by calling 800-395-5665
Cancer Services Program of the Hudson Valley: 855-277-4482 (weekdays, 9 to 5)
New York State Cancer Services Program: www.health.ny.gov/diseases/cancer/services or 866-442-2262 (24 hours a day)
Cancer Care: Offers a range of free services, including counseling and financial assistance. www.cancercare.org or 800-813-4673
CancerCare Co-Payment Assistance Foundation: A not-for-profit organization, affiliated with CancerCare, that provides co-payment assistance for oral or intravenous medication. www.cancercarecopay.org or 866-552-6729
Patient Access Network Foundation: Helps under-insured patients with out-of-pocket costs for lifesaving medications. www.panfoundation.org or 866-316-7263.
Patient Advocate Foundation Co-Pay Relief Program: Offers co-payment assistance to patients with health insurance. www.copays.org or 866-512-3861
The Breast Center at Nyack Hospital: www.nyackhospital.org or 845-348-8551
The Center for Breast Health at Good Samaritan Hospital: www.goodsamhosp.org or 845-357-7462
Dr. Martin Wertkin: www.wertkinbreastsurgery.com or 914-965-2026
The Wig Exchange: Free program, launching later this year, will offer high-quality gently used wigs to breast cancer patients. The program is run by Sole Ryeders & Friends, a volunteer-run organization based in Rye. www.soleryeders.org or 914-412-4884.
Free screenings in October
Free screenings in OctoberGood Samaritan Hospital and Nyack Hospital will offer clinical breast exams, mammograms and Pap tests at no cost for uninsured women 40 and over who are New York state residents. Walk-ins are welcome; to make an appointment at either site, call the Cancer Services Program of the Hudson Valley at 855-277-4482.» Oct. 19, 8 a.m. to 5 p.m., Good Samaritan Hospital, 255 Lafayette Ave. (Route 59), Suffern. 845-368-5000.» Oct. 22, 8 a.m. to 3 p.m., Nyack Hospital, 160 N. Midland Ave., Nyack. 845-348-2000.
Free Services in lower Westchester
Cancer patients who live south of Interstate 287 are eligible for free services from Cancer Support Team, a nonprofit home-care organization based in Mamaroneck. “There’s no income requirement,’’ says executive director Judith Dobrof. “We serve everybody.”
Services include in-home nursing care, counseling from social workers, financial assistance and help with driving and errands. The organization also has a Spanish-speaking case manager who helps patients obtain government benefits, and makes sure they’re aware of community resources, including food pantries, support groups and legal services.
A New York State grant also funds a part-time social worker who focuses exclusively on breast-cancer patients and their families.
Betty Barone of White Plains used Cancer Support Team after she had a mastectomy and reconstruction more than two years ago.
“I don’t think they get enough publicity,’’ she says. “Not having to pay is certainly good, but it’s the commitment of caring that’s first on the list for me.”
For information, visit www.cancersupportteam.com or call 914-777-2777.