Women’s Health Exchange responds to the New Breast Cancer Screening Recommendations from the U.S. Preventive Services Task Force

Early detection is the first line of defense against breast cancer.

Three members of the Women’s Health Exchange Board are breast cancer survivors whose early stage diseases were discovered long before the age of 50 through self exam, awareness of risk factors, and screening mammography.

The responsibility for early detection rests with every woman. Each of us must take responsibility for knowing our own body and being aware of changes. We are each responsible for knowing warning signs, and for understanding our medical history and our family history.

Until research tells us more about causes, effective prevention and possible cures, we must rely on early detection and effective treatment to continue to save lives.

While screening mammography has been the mainstay of breast cancer prevention in the United States for the last 25 years, breast self-exam and clinical breast examination are important tools in the promotion of early detection and breast cancer awareness. Breast health knowledge and increased awareness about the disease have led to a significant rise in survivorship numbers of breast cancer patients in the last 20 years. This communications and patient education must continue.

WHE will continue promoting self-awareness and early cancer screening. It is the right of every woman to benefit from early detection.

Teaching about breast cancer, one bead at a time

By Dan Mac Alpine/ ipswich@cnc.com
Fri Oct 30, 2009

IPSWICH - Four pearl-colored beads on a string dangle from brightly colored ribbons — blue, pink, red, green. They seem so beautiful, but symbolize something so deadly.

When pressed, the plastic beads feel as hard and unfeeling as the disease they represent. In a dangerous progression, they start at 6 millimeters and grow to 16 millimeters. The smallest represents the lump a mammogram can detect. The next, the size a doctor might find in a clinical, physical breast exam. The next, what a patient might feel in a personal breast exam. The last? The 16 millimeters? That’s the size no one wants to get to.

They’re called Remember Beads and they’re the product of Argilla Road resident Martha Donovan Hayward’s own battle with breast cancer, her fashion faux pas, her imagination and her determination to educate women around the world about breast cancer.

“The beads are very visual and tactile,” said Hayward. “They are a great teaching tool. They work across the language barrier. So, they’re good for communities where you have a lot of different cultures and languages. They’re also conversation starters. People have stopped me in elevators and asked me what they were and that becomes a teaching moment.”

Hayward and partners Camille Vicenti of Gloucester, Magnolia Contreras of Lynn, Kari Dudley of Medfield and Yelena Wetherill of Jamaica Plain, have just incorporated a nonprofit company, Women’s Health Exchange, that will focus on manufacturing and distributing the beads and breast-cancer education around the world.

Hayward represented the company at Lance Armstrong’s Global Cancer Summit in Ireland over the summer — even as she and her partners were still incorporating. There, Hayward made worldwide connections and the beads are now in use and being made in Kenyan villages. Hayward also introduced them in Siberia. They’re being used in Lynn and Lawrence. In all, the Women’s Health Exchange has sold about 1,000 sets of beads, with a goal of 10,000 within the next year.

“At this point we want to take a giant leap in reach by cutting the cost by manufacturing them,” said Hayward. “We want to distribute them and have them made worldwide, because they do the work all by themselves. When people see them, breast cancer conversations start happening.”

Currently, groups of about 20 women gather at Hayward’s home and after dinner, and among dishes of M&Ms and glasses of wine and lots of joking the women make the bead strings.

The beads come in three styles:
· Remember Beads strung on an 18-inch ribbon for $9;
· Remember Beads lanyard strung on a 45-inch ribbon that a health worker can clip identification to and hang around the neck for $16;
· Recovery Beads lanyard strung on a 45-inch ribbon for a patient recovering from a mastectomy for $16.

The original idea for the beads came from Hayward’s own recovery from a double mastectomy four years ago.
Just prior to her diagnosis, Hayward’s sister was being treated for breast cancer. She had lumpectomy, 16 weeks of chemotherapy and six weeks of radiation.

“I was sitting with my sister during chemotherapy and I thought I should get myself checked,” said Hayward. She did. And the tests showed she didn’t have a single breast cancer. She had six different kinds of breast cancer in both breasts.
Fortunately, the cancers hadn’t moved deeply into her lymph nodes. Following her double mastectomy, Hayward had to have additional surgery to remove on lymph node as a precaution. Chemotherapy followed and, four years later, Hayward still takes an Arimidex pill once a day to attack any nascent cancer cells.

Following her diagnosis, Hayward was meeting with another friend who had also been diagnosed with breast cancer for lunch at the Black Cow in Hamilton — within three weeks two other of Hayward’s friends were also diagnosed with breast cancer.
“I was early and I saw this beaded pink ribbon and a big bow in the window at Talbots,” said Hayward. She bought one for herself and one for her friend. “I have no fashion sense. I thought it was a necklace, so I wore it to the lunch around my neck.”

Turns out, the “necklace” was actually a belt — but no matter, whatever it was, the fashion accessory was about to take on a very practical and spiritual role.

Hayward was lying in her hospital bed, recovering from her surgeries. A nurse came in and told her she could be discharged and told her to get dressed — which isn’t as easy as it sounds after the surgeries Hayward had endured.

Following the lymph surgery, doctors attached four draining tubes that came out of her sides and collected fluid in small bottles at the end of each tube and detached when full.

The drains don’t present that much of a problem while in the hospital. They simply attach with pins to the hospital Johnny. But what to do when one has to don street clothes?

“I’m standing there with the drains hanging out of my sides and I had no idea where to put them so I could get dressed,” said Hayward. “Then my daughter said I should put the pink belt around my neck and attach the drains to that. I looked in the mirror. It was the first time I’d seen myself without my breasts and I had this big pink belt on with the pink bow and I thought I looked great.”

Hayward got dressed. Her doctor came into the room and saw an immediate solution to a problem every woman recovering from even a single mastectomy faces: what to do with the drains. And the idea for the Remember Beads was born.

“It turned out my solution could be a solution for a lot of women,” said Hayward. “I had these drains coming out of my body. I had no idea what to do. So I had to come up with a solution in the moment.”

Now, that “solution of the moment” could be the gift of life for women around the world.

“Their story is teaching women to pay attention to their own breast health,” Hayward said.

Check out the article.

Martha Hayward Speaks at Dana-Farber’s Beam Signing Ceremony

Martha Hayward, former Dana-Farber patient and current member its Patient and Family Advisory Council (PFAC), speaks at Dana-Farber’s beam signing ceremony to celebrate the completion of steel framing on the new Yawkey Center for Cancer Care alongside Dana-Farber president Ed Benz and Boston’s Mayor, Tom Menino.

Mayor Menino and Martha Hayward at the Yawkey Center Beam Signing

Following is Martha Hayward’s speech at the DFCI – YCCC beam signing April 14, 2009.

Thank you Dr. Benz-

One of my aha moments when I was coming here regularly for treatment happened one day getting on the elevator on Dana 1.

I held the door open for a family. Dad was in a wheelchair with his 3 yr old daughter on his lap. Mom was pushing one side of the chair with one hand while holding on to a 4 year old with the other hand, and the big brother, maybe eight, was pushing the other side. The chair was jury-rigged to hold a full days worth of food, reading material and entertainment for all ages, as well as entire birthday party set up for one of the kids.

We all see this every day in this place. Family and patients not just making life work, but making life prevail in the face of cancer. This is the place where we learn our diagnosis, undergo our testing, receive our treatment. But it is so much more than a medical facility.

This is the place where we have our last moments before we become cancer patients.

This is the place we never wanted to come to but, strangely, there are days we do not want to leave.

It is here where we search for answers and hope, where we are at our best and at our worst. We bring our family here. We live out our lives here. And we make friends here. This place and the time we are here serves as the fulcrum for life before cancer, and life after cancer.

The leadership of Dana Farber figured out a long time ago that if you want to get something done, ask a cancer patient. They have asked patients and families for ideas on this new building from the start. In 2010 every person who walks through the doors of the Yawkey Center will experience the benefits of that input. As a member of the PFAC I have been involved in some of the planning for the Yawkey Center.

Board Members Magnolia Contreras (left) and Martha Hayward (center) at the Yawkey Center Beam Signing

I didn’t have a lot to say about the set up in the research labs but I definitely spoke up about having easily accessible outlets for charging your cell phone.

This structure and design of this building is a reflection of the dedication to, and respect for, patients and their families, that permeates every decision in this Institute.

Last week I was reading some of the notes written on the beam and I thought how fitting it is to have such tender words written on this massive piece of steel that will be part of the support structure of the new building.

This is what I wrote on the beam:

Being a part of this place I know that I have lived among some of the most innovative and courageous people on earth.

Thank you.

-Martha Hayward

Wetherill Recognized for Outreach

Inside the Institute, Dana-Farber Cancer Institute
Volume 14, Issue 4

Women entrepreneurs recently honored Yelena Wetherill, PhD, a post-doctoral fellow in Cancer Biology, for organizing a symposium last June in her native Irkutsk, Russia, focused on breast cancer education, prevention, advocacy, and survivorship. Wetherill was one of three recipients of a “Giving Back” award at the January meeting of Women Entrepreneurs in Science and Technology (WEST), a professional group encouraging its members to take risks, solve problems in new ways, and lead others to success.

In a culture where privacy is valued, 50 percent of Russian women diagnosed with breast cancer die from the disease – far higher than the normal mortality rate – because they do not seek care until their cancer is already advanced. The most common treatment there is radical mastectomy.

“In Russia, breast cancer is a subject with so much stigma,” notes Wetherill. “Our aim was to help clinicians, community leaders, and patients begin a dialogue, and we exceeded our expectations.” She planned and led the three-day symposium with Martha Hayward, a breast cancer survivor and member of Dana-Farber’s Adult Patient and Family Advisory Council.

For Wetherill, the award from WEST provided a welcome opportunity to speak publicly about her experience in Irkutsk. “It was very energizing,” she says. “Several members of the audience said my talk inspired them to consider similar outreach.” She and several Dana-Farber colleagues are seeking funding to sponsor another such event in Russia next summer.

DFCI Team Teaches Care in Russia

Inside the Institute, Dana-Farber Cancer Institute

Volume 13, Issue 14

There is no word in Russia for cancer survivor, explains Yelena Wetherill, PhD, a postdoctoral fellow in Cancer Biology at Dana-Farber and a native of this vast country where 50 percent of the women diagnosed with breast cancer die from the disease. The closest translation refers to someone who lived through a war. Wetherill and Martha Hayward, a breast cancer survivor and member of the Adult Patient and Family Advisory Council here, set out to change that.

The two women recently returned from Irkutsk, a 400-year old city in central Russia, where they organized a three-day symposium on breast cancer education, prevention, advocacy, and survivorship, attended by clinicians, community leaders, and patients, one of whom found kinship with Hayward.

“Natasha is about my age, 52, and her kids are my kids’ ages,” says Hayward. “She underwent mastectomy for a stage 1 cancer because she couldn’t travel 200 miles for chemo at the nearest cancer center, and she had not been taught how to do a self-exam to monitor for cancer in the other breast.”

Hayward uses Remember Beads™ – a string of four pearls of different proportions that she created, to represent the size of tumors at various detection stages – to teach women to check for breast tumors; a perfect tool for women like Natasha. In fact, about 45 symposium participants caused quite a stir as they walked across the Irkutsk State University campus, where the event was held, proudly wearing the necklaces.

These generally reserved women explained to curious onlookers that the beads represented breast cancer prevention. Bordering on the clear blue Lake Baikal – deepest in the world – Irkutsk, located in southeastern Siberia, is known as a rich cultural center for poetry and art. Russians, however, value privacy, says Hayward. “Even though the women are sophisticated and well educated, they are uncomfortable talking about their bodies. Women go to the doctor alone, and don’t even know if their mothers died of breast cancer.” Health care, including mammography and cancer treatments, is free in Russia, and breast cancer drugs such as tamoxifen are available. Still, mammography centers are scarce, and cancer care is often far away. Most women do not seek help until their cancer is already advanced, and the most common treatment is mastectomy.

Last year, Wetherill organized a similar symposium in Irkutsk, funded by the Susan G. Komen for the Cure. This year, Hayward joined up, Dana-Farber’s Women’s Cancers Program provided the funding, and Magnolia Contreras, MSW, MBA, director of Community Benefits, lent expertise to the plans even though she didn’t go along on the trip.

Fast friends

When serendipity brought Wetherill, Hayward, and Contreras together, they became fast friends. Wetherill had read Hayward’s story in Side by Side, Dana-Farber’s quarterly newsletter for patients and families, in which she describes her experience with breast cancer and her mission to educate women about the importance of early detection. “I thought the beads would support my work because they transcend language,” recalls Wetherill. “As soon as I met Martha, I knew we were meant to work together.”

Later, Wetherill and Hayward heard about a talk Contreras had given at a Dana-Farber event, and decided to seek her guidance. “Community benefits can take place here in the Boston area or as far away as Siberia,” says Contreras. “I had examples of similar work to help address some of the issues women in Irkutsk are dealing with. The goal was to leave a local group – the Angara Women’s Union – with the tools to build their own breast cancer community education program.”

The seeds sown during this grass-roots effort will flower next fall, when 500 women plan to put aside their privacy and march through Irkutsk wearing the beads.

A Sister’s Gift Leads to Breast Cancer Education

Dana-Farber Cancer Institute:
Patient Care/Personal Profile/First Person

When my sister, Leslie, was diagnosed with breast cancer in January 2006, I realized I had not had a mammogram myself in nearly two years. Just as she reached the halfway point in her 16 weeks of chemotherapy, I had to tell her that I had breast cancer, too.

I will never forget making that phone call.

She was more upset about my diagnosis than her own. We couldn’t believe this was happening to us at the same time. I was 48, she was 50, we had no family history of cancer, and we were in excellent health.

Leslie paved the way for me. When I received my diagnosis, she had already taught me about various types of breast cancer. I knew the difference between a PET scan and an MRI, and understood the spectrum of treatments I would have to choose from.

As we moved ahead, we found comfort in each other. Our education as cancer patients was easier because we could compare notes and share the tricks we learned along the way, such as what to eat, how to sleep, what the aches and pains meant, what to wear, and how to be comfortable during a PET scan. In my very worst moments I never felt alone.

My dream is that every cancer patient will experience the same kind of education and support. In the two years since my double mastectomy, I have thought about ways to encourage women to be diligent in examining their breasts, and to be assured they are not alone. I came up with an idea that I hope will make a difference.

Beads symbolize early detection and recovery
Wanting to educate women about the importance of early detection and the stages of recovery, I developed two separate bead designs: recovery beads and remember beads.

One of my hardest moments after surgery was when my nurse told me I could get dressed and go home. Like all breast surgery patients, I had four tubes for draining coming out of my incisions. I could not figure out how to get dressed. My daughter had the great idea for me to wear a long, chunky, pearl necklace that I had brought with me to the hospital. So, I clipped the tubes to the necklace, and when my surgeon saw me, he said this was the classiest, most creative solution he had seen.

You might ask why I brought the necklace to the hospital. Well, I had two friends facing mastectomies around the same time as mine. When I saw the necklaces in a shop, I bought one for each of us as a symbol of solidarity.

Recovery Beads

I wore mine for days after I got home, and came up with the idea for “Recovery beads.” Strung on a 45-inch, necklace-length ribbon, these beads can be worn by patients during their early weeks of recovery from surgery, until their drains are removed. In addition to being a useful post-op tool, the beads offer a concrete way for patients to share information about their own cancer, and convey the message that early detection is key to survival.

One day I used them to explain to a friend what size tumor I had. That was the moment “Remember beads” were born. Strung on an 18-inch, brightly-colored ribbon, remember beads are decorative and can be hung on a car mirror, door knob, or just about anywhere. I brought them with me to all my appointments, and they served as worry beads while I was waiting.

Both sets feature four pearls strung in increasing size to represent a simple and tactile way of increasing awareness and educating women about the importance of breast self-examination and annual mammograms. The smallest bead is the approximate size of tumor a mammogram can detect, the second what your doctor may feel during a clinical exam, the third is what you might find during a self-exam, and the largest is the size of an undetected tumor.

In addition to using remember beads, we can encourage our friends, daughters, mothers, and friends to talk openly about their illness, call for regular appointments, and help educate other woman around the world about what they can do to conquer cancer.

My sister’s reminder to get a mammogram saved my life. It is the gift every breast cancer survivor can give others. Each of us is a living reminder that early detection really does make a difference.

View the article in Dana-Farber’s publication Side by Side.