Nine years ago, when Harrington Park resident Arlene Dugan was diagnosed with breast cancer at 45, she quickly realized she was the only person she knew struggling to beat the disease while raising young children. Today, she’s glad to see that not only can young women can find their own support groups, but that there is a strong grassroots effort, especially in Bergen, to raise money targeted for research into breast cancer in young women.

“It was very trying getting diagnosed, and then seeing no one was going through what I was.” Dugan recalls, the memory still agonizingly fresh, “No one had a 6-year-old, two other children [under the age of 12] and a husband who worked all the time.”

Today, pre-menopausal women in the throes of treatment can reach out to other 30-something patients.

“This makes a huge difference,” Dugan says. Now, “young women can find where to go for support, who to contact for information.”

Awareness and medical research has been stepped up significantly during the last five years, and many area residents are doing their part to increase funding for this disease that is striking, with alarming frequency, during women’s childbearing years.

Dugan is now chairwoman of the Play For P.I.N.K. chapter at Knickerbocker Country Club in Tenafly, which has raised more than $100,000 since 1999 with its annual tennis and golf luncheon. In fact, Play For P.I.N.K. (the initials stand for Prevention, Immediate diagnosis, New technology and Knowledge), a large organization of individual country-club chapters across the country, originated at Alpine Country Club, Demarest. The group donates 100 percent of the money it raises to the Breast Cancer Research Foundation, and since its 1996 inception, has donated $12.75 million.

Race for the cure
A cure can't come fast enough. One in eight women in the United States is diagnosed with breast cancer, including 11,000 under the age of 40. Huge strides have been made in treatment of the disease overall, but fighting it in younger women is very often a much more difficult battle – mainly because this type of cancer does not respond as well to varied treatment, and can be much more aggressive than cancer in other parts of the body.

Breast cancer is actually not one disease, but a whole range of different forms of cancer that originate in the breast. Many types are characterized by one or more of three catalysts that fuel the cancer: estrogen receptors, progesterone receptors and human epidermal growth-factor receptors (HER2). But, some breast cancers – particularly in young women – do not have any of these receptors, making treatment less successful since the cancer is unresponsive to the most effective receptor treatments. Women with this type of disease are said to have triple negative breast cancer.

Cresskill resident Nancy Block-Zenna died from the disease in 2007, less thean three years after being diagnosed with it at age 35. In her honor, several of her close friends in 2005 founded the Triple Negative Breast Cancer Foundation, devoted to finding a successful treatment for the disease. The women have continued, full speed, to carry on the organization’s mission to raise funds and awareness.

“Nancy was young, healthy, and had no history of breast cancer,” explains Allison Axenrod, the group’s executive director. “There is still no targeted treatment and we are raising money for research specifically targeted for this disease.”

A cocktail reception held in June at a private home in Demarest raised upwards of $300,000, Axenrod notes. “And, we have many more people coming on board – relatives and friends of women who have been diagnosed, and want to get involved.”

Some Bergen-based survivors said they were surprised at the time of their diagnosis at the lack of support and information available on how breast cancer affects younger women, who face different issues from older generations when battling the disease.

Many have joined the Young Survival Coalition, which focuses on raising awareness about breast cancer in the medical community as well as to caregivers, friends and family members. It sponsors events such as cooking classes, yoga sessions and fundraising runs for survivors where they can network and meet other young women with the disease.

Christine Odell, an active member of the coalition’s Northern New Jersey affiliate, was diagnosed in 2002 at age 35 while nursing her then 4-month-old daughter. Odell, a Midland Park resident, said she was always the youngest woman at typical support groups, and was worried about seeing her children grow up – something many of the other group participants had already experienced.

“No one here is in my situation. This just shouldn’t happen,” Odell remembers thinking as she attended meetings. “Chemotherapy can put you into instant menopause, you may lose your fertility, and the tiredness lasted about a year after treatment stopped.”

Medical intervention
Close collaboration with the medical community is imperative, notes breast cancer survivor Saranne Rothberg of Tenafly. Misdiagnosed in 1993, she had already progressed to stage IV – the most advanced classification – when, in 1999, doctors finally found the disease, which had metastasized.

Now, her ComedyCures organization, which provides therapeutic comedy events, workshops and comedy shows, helps raise awareness and money to donate to cancer research and support organizations such as Gilda’s Club Northern New Jersey, located in Hackensack. “When I share my journey and comedy, especially with young girls, it takes the terror out of breast cancer,” says Rothberg. “They tell me they were petrified of being diagnosed, but after hearing how I coped, they are less anxious, and more informed.”

Getting the word out to young girls, sometimes starting in high school, is a mission several organizations are actively pursuing. The Susan G. Komen Breast Cancer Foundation, through its “Teens For the Cure” program, has given talks to 60,000 teenagers across the state. It focuses on, among other topics, the need for a good body image and the importance of mammograms. Barbara Waters, director of education and outreach for Komen’s North Jersey affiliate, explained that part of the program’s goal is to get the girls to take the information back to their mothers, aunts and grandmothers – especially those in minority or low socio-economic neighborhoods.

“There are so many women out there without health insurance, and in many cultures like the Asian, Hispanic and African-American communities there are of a lot of cultural barriers,” Waters says. “They say everything from ‘God will protect me’ to believing a biopsy will spread cancer. We’re about breaking down these myths.”

Targeted outreach
Tackling the same types of misconceptions, the Korean Medical Program out of Holy Name Hospital in Teaneck focuses on delivering medical care to its population. Dr. Hee Yang, a Holy Name surgeon, explains that reaching young women is imperative in the Korean community.

“We don't have the numbers,” Yang acknowledges, “but the consensus of opinion is, there is an inordinately high number of Korean young women being diagnosed with breast cancer.” The program, notes director Kyung Hee Choi, also runs several fund-raising events, such as a walkathon and a cocktail party at Tiffany & Co. at the Shops at Riverside in Hackensack. Money raised at the party was used to offer free mammograms to 200 low-income women.

“Like the Hispanic culture and others, women are at the bottom of the totem poll,” says Choi, “so they just don't think about going to the doctor or hospital for screenings, they are so busy taking care of everyone else.”

Wyckoff resident Lynne White saw firsthand in her 37 years in the clothing business just how many women, across all cultures and age groups, were not taking good medical care of themselves. So, five years ago, she started Angels of Hope, raising money with first one, then two, and now three events a year. From a black-tie gala to a run-walk and then a luncheon, just under $700,000 has been donated to breast-cancer treatment at Hackensack University Medical Center, where the John Theurer Cancer Center is slated to open in 2010.  

Just to be sure people are aware of the need for more research, White has erected a huge white thermometer sign in downtown Wyckoff, with red markings showing how much money Angels of Hope collects. The fixture sits on Wyckoff Avenue from July through October.

“I heard so many people getting diagnosed, I wanted to do something,” White explains. “When I talk to women, I find the underlying reason so many don't get annual screenings is fear. We have to get the word out about how important it is for women to take care of themselves.”

Englewood resident Jill Fader believed so strongly in the need to raise awareness of how this disease can strike any woman at any time, she started the Walk For Awareness to benefit Englewood Hospital and Medical Center (EHMC) in 1999, only a year after her diagnosis, just shy of her 39th birthday. It was actually her husband, Paul, then mayor of Englewood, who suggested the fund-raiser after the couple participated in a walk in Central Park for the Susan G. Komen Foundation.

“I was just overwhelmed with the wonderful feeling I got that day from other survivors, their friends and family, that I wanted to bring that to other women,” Jill Fader says.

To date, the event, now sponsored by the EHMC Foundation, has raised $1 million. The foundation also sponsors the Kennedy Funding Invitational tennis classic, which added $650,000 in two years to the coffers at the Leslie Simon Breast Care Center at EHMC, and is expecting another $500,000 this year.

Dugan, the Harrington Park mother of three, is glad that fund-raising, awareness, and research are on the rise. But she knows that for those recently diagnosed, it’s still a terrifying experience. She recommends wholeheartedly that patients do as much research as possible.

“Bring someone with you to your doctor’s appointments who can take down notes, bring a list of questions, and become as informed as you can,” says Dugan. “Then, remember, this is just a moment in time. It’s a horrible moment, but you will get through it.”

As for all the grassroots efforts being made, Dugan adds, “the work done over the past 10 years has just exploded – the money raised has opened up a whole wealth of information, research and support for women with this disease.”

As those women will undoubtedly agree, let the explosion continue.

RESOURCES:

ANGELS OF HOPE
637 Wyckoff Ave. Wyckoff, (201) 891-2900; www.aoh-nj.org 
This Wyckoff-based charity has raised nearly $1 million for the John Theurer Cancer Center, a comprehensive facility scheduled to open in 2010 at Hackensack University Medical Center.

COMEDY CURES
140 County Road, Suite 111, Tenafly; (201) 227-8410, www.comedycures.org
Founded by comedienne and breast cancer survivor Saranne Rothberg, the nonprofit Comedy Cures strives to bring laughter, joy and therapeutic comedy programs to children  and adults living with illness, trauma, depression and disability. The organization entertains through live events and digital outreach.

WALK FOR AWARENESS
Englewood Hospital and Medical Center, 350 Engle St., Englewood (201) 894-3000; www.walkforawareness.org
Jill Fader, a breast cancer survivor, and her husband, Paul, then mayor of Englewood, founded the Walk for Awareness to heighten public recognition of this disease. The Walk benefits the Leslie Simon Breast Care and Cytodiagnosis Center at Englewood Hospital and Medical Center.

MAKING STRIDES AGAINST BREAST CANCER SOCIETY
(201) 457-3418www.makingstrides.acsevents.org, Paramus.strides@cancer.org
The American Cancer Society’s premier event, Making Strides Against Breast Cancer encompasses a series of walks, held nationwide, to raise awareness of, and money for, the fight against breast cancer.

MAMORIAL PROJECT
440 Curry Ave., Suite A, Englewood; (201) 568-3626; www.mamorial.org
The nonprofit Mamorial works to effect greater global awareness of the scourge of breast cancer. By creating an extensive collection of life-castings of breasts affected by various stages of the disease – from detection to radical treatment, including mastectomy and reconstructive surgery – the organization uses the universal language of art to call for change.

WALK FOR MOM
Sponsored by Holy Name Hospital, 718 Teaneck Road, Teaneck (201) 833-3000; www.holyname.org
“Walk for Mom” is a breast-cancer awareness campaign affiliated with the hospital; contact Ki Kim, (201) 833-3399. The Korean Medical Program at Holy Name aims to provide the Korean population with an ideal hospital, helping to bring down language barriers between patients and their medical providers.

THE KENNEDY FUNDING INVITATIONAL
www.thekennedyfundinginvitational.com
This three-year-old organization holds annual tennis tournaments to raise money for the fight against breast cancer. Proceeds benefit the Leslie Simon Breast Care and Cytodiagnosis Center at Englewood Hospital and Medical Center, as well treatment programs at Nyack Hospital. The 2008 event, which featured tennis commentator and former Wimbledon champion John McEnroe, raised more than $1.125 million.

PLAY FOR P.I.N.K.
Play for P.I.N.K., The Breast Cancer Research Foundation: Stephanie Hamburger, (646) 497-2605; Arlene Dugan, dugan2425@aol.com,; www.playforpink.org
The northern New Jersey arm of Play for P.I.N.K., which benefits the nationwide Breast Cancer Research Foundation, was established in 1996 at the Alpine Country Club by a group of women in honor of their friend who had been diagnosed with breast cancer. This inspiration spurred the creation of a golf tournament whose proceeds were donated to research; the success of the event paved the way for other Bergen country clubs to begin hosting their own Play for P.I.N.K. tournaments.

STEPS FOR SURVIVAL
www.stepsforsurvival.com.
A fund-raising initiative sponsored by professionals in the medical offices of Dr. Richard D’Amico and of Drs. Frank Forte, Michael Schleider, Lewis Attas, Jill Morrison and Giuseppe Condemi, Steps for Survival benefits the Leslie Simon Breast Care and Cytodiagnosis Center at Englewood Hospital and Medical Center. The organization hosts annual events to raise money for the cause.

SUSAN G. KOMEN FOUNDATION NORTH JERSEY AFFILIATE
785 Springfield Ave., Summit; (908) 277-2904 cure@njakomen.org
The North Jersey Affiliate was founded in 1997 on a promise to a 10-year-old girl who lost her mother to breast cancer, and longed for a local group that would “make a difference” to those deeply affected by the disease.

TRIPLE NEGATIVE BREAST CANCER FOUNDATION
P.O. Box 204, Norwood; (646) 942-0242 www.tnbcfoundation.org
The TNBC Foundation works to raise awareness of triple negative breast cancer, a particularly recalcitrant form of the disease because it is estrogen receptor-negative, progesterone receptor-negative and HER2 negative. The organization supports scientists’ and physicians’ efforts in detection, diagnosis, prevention and treatment, as well as the determination of a definitive cause.

YOUNG SURVIVAL COALITION, NORTHERN NJ AFFILIATE
P.O. Box 808, Lyndhurst, 07071; (201) 493-9606, www.youngsurvival.org/northernewjersey; e-mail: yscnnj@youngsurvival.org
A nonprofit international coalition, the Young Survival Coalition (YSC) is comprised of breast cancer survivors and supporters dedicated to addressing those concerns unique to young women with breast cancer. YSC reaches out to researchers and scientists and the breast-cancer and legislative communities to convey to them the urgency surrounding the growing prevalence of this disease in women under 40. The Northern New Jersey Affiliate also serves as a way for Bergen women living with breast cancer to connect with one another.