A local community for breast cancer survivors

October's awareness month shines a light on patients and support groups

By Mike Briotta, PRIME Editor In the basement offices of the Northampton lingerie boutique Gazebo, swathed in mauve fabric, sits "Ma" a soft mannequin who keeps store owner Judith Fine company when she's making custom breastforms for women recovering from a mastectomy. "It's not just about business, but about giving women dignity," Fine said. "I've been in business since 1978, and a certified fitter since 1992. We now have three certified fitters. It's a nice atmosphere and we have a large selection." Pink Petal in South Hadley also offers post-mastectomy products, however, Fine points out that "Medical supply places may carry only one breastform. There's usually not a big dressing room with couches. We are a lingerie store, it's a boutique situation with a little more comfort in the surroundings." Fine decided to add post-mastectomy bras and breastforms to her shop in the early 1990s when her former husband was diagnosed with cancer. "Once that word enters into your vocabulary, it's everywhere," she said. "You're not oblivious to it before, but it's different when someone close to you is diagnosed and you say the word out loud. You're suddenly in a club that you never wanted to be in. A light bulb went off in my head. Here I was, in a bra store dealing with breasts. Whether a woman has one, or two, or none, really doesn't matter to me." Her funky boutique helps women feel more comfortable dealing with what can be a very uncomfortable personal subject. "Does this normalize what a woman is going through? No, but maybe it takes a little bit of the stigma away. It's a vulnerable time for a woman. It's important to be treated with dignity. By the time she's coming here she's been poked, prodded, cut, stitched and drained. She should be able to come to a place that's more about a celebration of who she is, rather than have her cancer define her," Fine said. Whether by virtue of her shop's good reputation, or an improvement in the medical establishment's treatments of breast cancer patients throughout the years, Fine said she's seen an increase in this side of her business in the past two decades. "We hope to see lots of breast cancer survivors," Fine said. "We see a lot of women who are coming here multiple times — which is wonderful news, because that means they are still here." She's stayed in contact with one breast cancer survivor in particular since first assisting her in 1992. Her business also helped to found a nonprofit group called The Breastform Fund. Its goal is to help women in Massachusetts who need financial assistance for breast prosthesis and post-mastectomy bras. "Women should know that financial assistance is available," Fine said. "No woman should have to stuff her bra with socks. She deserves the dignity of having a weighted, silicone breast." Breastforms come in all shapes, colors and sizes. "A woman of color should not have to wear a pink breast," she said. The shop also offers the option of a custom breastform, each crafted by hand in the workshop of Gazebo's lower level. As each mastectomy can leave unique scars on a woman's body, so too can Fine create a perfect complement to the physical features left behind on the chest wall. Usually tailored after hours (sometimes with the help of a glass of wine), Fine's papier-mache castings will be the basis for each of her unique, custom breastforms. "Intimate apparel is very personal," Fine said. "We're being entrusted with a woman's vulnerability. We safeguard it and take care of it." Upstairs, on the ground floor, a sign in one of Gazebo's fitting rooms contains a quote from Emerson: "Most of the shadows of life are caused by standing in our own sunshine." Fine opens box after box of breastforms to show the wide variety of options now available. It's anything but one-size-fits-all. She estimates that about 20 percent of her business now comes from breastforms and post-mastectomy bras, which feature a built-in pocket. Adorning the walls of her shop are artistic odes to bras, including the so-called "Excalibra," which bring levity to the space. As she spoke, a woman undergoing treatment for breast cancer came in to speak with the salespeople at Gazebo. They didn't just sell her a product, but showed a genuine interest in her health, and helped her try to navigate the choppy waters of insurance coverage — at a point in life when no woman is prepared to worry about such things on her own. Finding Strength At just 30 years old, Springfield native Margarita "Maggie" Montero is already a breast cancer survivor. She was first diagnosed as a 27-year-old single mother, right around Christmas of 2008. At the time, she was shocked to learn she would soon be facing a lumpectomy, chemotherapy and radiation treatments. After all, she was always told that a woman didn't need to start getting mammograms until about age 40. Montero has participated in the annual Rays of Hope walk, since before she was diagnosed with breast cancer. "I've done that each October for six or seven years," she said. "So it's kind of ironic that I fell into that category. A friend of mine was doing the walk, and I just wanted to support the cause." She continued, "I was diagnosed in December of 2008. It was pretty surprising. The rug was swept out from under me. I was diagnosed on Dec. 8 and had surgery Dec. 31, a lumpectomy. It was all completely out of the blue. There was no history of breast cancer in my family. You can get tested to see if you have the gene, which I later did because I was concerned for the future of my daughter Khayla. I was 27 when I got diagnosed. They say the younger you are, the more aggressive the cancer is." She continued, "I did eight treatments of chemotherapy over 16 weeks, and also a total of 44 radiation sessions from Monday through Friday, the same time every day." Montero was treated at Baystate. "Everyone was so friendly and helpful," Montero said of her treatments there. Montero has since been a beneficiary of the Rays of Hope, receiving a care package during her treatment. She finished her treatment for breast cancer in September of 2009, and has been in remission since. "It's very tough to look ahead at treatment before you start," she explained. "It's such a long process. But I had a calendar that shows you how long it takes, and so you can see how much you're accomplishing along the way, and that it's not that far to go. Try to stay optimistic — that's the best thing. When I found out about my diagnosis, I knew that I still wanted to get married and have more kids. I worried that this might stop me from having more kids at 27." She's a bookkeeper with the Longmeadow toy store Kiddlywinks, where she's worked for nine years. "They're great," she said of the group of colleagues there. "I'm very thankful I had Kiddlywinks here during everything I went through. If I needed to leave or wasn't feeling well, they told me I could come in as much as I could. They've been very supportive." Montero is now engaged to Jason Valencia and the couple is looking forward to a 2013 wedding. "It can be tough opening up about this with a new person," she said. "You don't want people to feel bad for you, but you want to acknowledge what happened." The chemotherapy temporarily robbed Montero of her hair and challenged her self-image. "I had to wear a wig for about a year," she said. "It takes time for your hair to start growing again. It was at least 10 months. You look in the mirror and don't recognize yourself. Your eyelashes and eyebrows are gone. You almost look alien. You try to be positive, and know that it will come back. You realize your life is more important, that personal appearances don't matter at that point." She continued, "Going into surgery, I knew it was a simple procedure but I wondered if I would die. What would happen to my daughter? Every day was a fight for your life, and for your quality of life. I knew that I had to be strong for my daughter." Recovery remains a slow process, and feeling like herself again is not something Montero takes for granted. "I've felt normal for the last year," she said. "I kind of took a deep breath afterward," Montero added. "I want to look into all the organizations and support groups, to help women become informed and get mammograms. There's so much to say. How do you explain everything you've gone through? Everybody's journey is different. It's something that will affect your life, but you have to know you'll get through it, and you will be that much stronger." Hope of the Valley October is National Breast Cancer Awareness Month, and the good news for anyone currently facing this disease is that 80 percent of women diagnosed with breast cancer today will be survivors. Breast cancers today are smaller, detected sooner and less likely to have spread. So now more than ever, there is a community focus on survivorship and the impact on families. When walkers lace up their sneakers for the Rays of Hope — A Walk Toward the Cure of Breast Cancer on Oct. 23, they will change from an assembled crowd of individuals and small groups affected by this disease into one large community. All money raised through the walk remains local and is earmarked for supporting services for breast cancer patients and survivors, breast health education and research, and other community projects. Dr. Grace Makari-Judson is the medical director of the Comprehensive Breast Center at Baystate Medical Center (BMC). "We're very happy with the success of our survivors, and we have a well-established survivorship program," said Makari-Judson. "Survivorship starts really the day of diagnosis and extends throughout treatments such as surgery, chemotherapy, radiation or hormone treatments. Patients are so busy with active treatments the first year, they often don't have time to stop and think about the big picture. We offer them a care plan, a game plan for the next five years." The rate of survivorship for women with breast cancer has risen steadily over the years, the doctor said, due to two main factors: early detection and better treatment. "Over the last 20 years, the likelihood of survival has increased two percent per year," Makari-Judson said. "We're facing smaller tumors, and with better treatments." The BMC cancer survivorship care plan outlines each patient's team of oncologists, surgeons, nurses and wellness coordinators. Its 15th annual survivorship day is scheduled for next March. Sandy Hubbard is a nurse practitioner in the hospital's medical oncology department, and she's also the outreach coordinator for Rays of Hope. "I have patients that are two years out, but I also have patients who are 20 years out [from their original breast cancer diagnosis]," she said. "I think people feel comfortable with us, and everything is right here. This is your team; it's personalized care." A diagnosis of breast cancer is frightening for any person, but a person whose first language is not English can be doubly burdened by doubts about understanding treatment and care options. Enter groups like La Esperanza, Hope of the Pioneer Valley. "We've been doing this since 1995, when it first started as a support group for women with breast cancer and their families," said Executive Director Jeanette Rodriguez. "Gandara Center has [funded La Esperanza] up through April of 2010 when La Esperanza incorporated. We are currently funded by Rays of Hope and the Susan G. Komen Foundation, as well as subcontracting with Gandara for outreach and education." Gandara Center provides educational "charlas" (Spanish for "chat") in the homes of Latinas in Springfield and Chicopee. Using trained bilingual women who have breast cancer to deliver the services, women are taught how to do self-exams, where to go to get cancer screenings, and how to eat healthy foods to support their own wellness. The Women's Center at Holyoke Medical Center also facilitates Amigas de Pecho, a center's breast cancer support group designed to meet the needs of primarily Spanish-speaking Latina women. That group, which is separate and distinct from La Esperanza, meets every other Wednesday evening for two hours. La Esperanza, translated as "The Hope," runs a twice-monthly support group at the D'Amour Center at BMC, the first and third Thursdays of each month. The group serves Spanish-speaking women only. "In the valley, we are so rich with services for English-speakers," Rodriquez explained. "But with Latina women, it's a little different for them. We provide child care, food, transportation and support groups." Their activities rely on the experience of survivor mentors: women in remission who have the interest, energy and inspiration to help others like themselves. They share their experience and their stories, encouraging women to seek early detection screenings and providing support to women diagnosed with cancer via support groups and home visits. "Some women like to attend the groups, and for others its about spending time talking with one person about what they're going through — to deal with their fears and their pain," Rodriguez said. "I always ask, 'Who was this person before they were diagnosed?' She's still that woman now, just with a diagnosis of breast cancer." PRIME