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www.sharecancersupport.org Toll-free Helpline: (844) ASK-SHARE
165 West 46th Street, Suite 712 New York, NY 10036 212.719.0364 1
Dear Friends,
SHARE was started in 1976, when a breast specialist named Dr. Eugene Thiessen called together
women with breast cancer to attend a group to support one another. Twelve women showed up, and
40 years ago, SHARE was born. The organization continues to provide dedicated, experienced
support to women facing this disease.
In SHARE’s early years, cancer was considered a death sentence and was taboo even to discuss.
Women with breast cancer were facing radical mastectomies and no emotional support. Many kept it
a secret from friends and family. SHARE offered them the chance to talk about cancer with others
who were going through it. Through SHARE, they got the support they needed to face the disease.
SHARE started out as an organization of women helping women, and peer support remains central
to SHARE’s work today. Over the years, our methods and our reach have grown. In addition to
offering breast cancer support, we help women facing ovarian cancer and metastatic disease, as
well as caregivers, Spanish-speaking women and their families, and medically underserved
communities. We reach women and men in their workplaces, in their neighborhoods, in hospitals
and clinics, on the telephone and online through social media, webinars, videoconferences, email,
and streaming talk radio.
Today, cancer patients face the challenges of choosing among different treatment regimens, the
collateral damage of chemotherapy and radiation, contradictions over how to manage DCIS, and the
complexities of whether or not to undergo genetic testing. More than ever, patients need support
from others who have been there -- to get information available only from other patients and
survivors, to learn to partner with their doctors, and to make informed decisions about their care.
For the next 40 years and beyond, SHARE will be here providing support and information to women
and men in the most innovative and convenient ways possible so that they can manage breast and
ovarian cancers.
Sincerely,
Jacqueline Reinhard Ilene Cohen
Executive Director, SHARE President, Board of Directors, SHARE
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FOR IMMEDIATE RELEASE
March 18, 2016
Contact: Beth Kling, SHARE
212.937.5573
Nonprofit SHARE Celebrates 40 Years of Serving Women Facing Breast and Ovarian
Cancers
New York, NY (March 18, 2016): In 2016, the nonprofit SHARE celebrates 40 years of
supporting women facing breast and ovarian cancers.
SHARE provides support, information, and inspiration to women facing breast and ovarian
cancers and their families and caregivers. The organization was started in 1976 by breast
specialist Dr. Eugene Thiessen and twelve breast cancer patients and survivors. Currently,
SHARE provides free services to 40,000 people annually through support groups, a survivor-led
helpline, educational programs and webinars, and outreach to underserved communities.
“When SHARE started in 1976, breast cancer was considered a death sentence, and it was
taboo even to discuss it,” says Jacqueline Reinhard, SHARE’s Executive Director. “Today things
are very different, but it’s still vital for people affected by breast and ovarian cancer to get
support from someone who’s been there and who is specially trained to help them. Peer-led
support was what SHARE was about in 1976, and it remains a crucial component of what
SHARE offers today.”
In the 40 years since its founding, SHARE has added services to support women facing ovarian
cancer, Spanish-speaking women through its LatinaSHARE program, women facing metastatic
disease, caregivers, and women of African descent. In addition, SHARE offers educational
programs and webinars presented by experts in the breast and ovarian cancer fields, such as
Dr. Susan Love, Dr. Larry Norton, and Dr. Stephanie Blank. Five years ago, SHARE developed
an Ambassador program to reach women in underserved Latino and African-American
communities with information and support. Six years ago, SHARE created the Pink and Teal
Seminar Program to educate and empower corporate employees in their workplaces; 100
corporations have participated to date.
(over)
3
SHARE’s 40th Anniversary Events
A Second Helping of Life: A Tasting Event to Benefit SHARE featuring NYC’s top women chefs
When: Monday, September 29, 2016, 7:00 PM-9:30 PM Tasting, 6:00 PM-7:00 PM VIP
Where: Pier 60, Chelsea Piers, New York, NY
About SHARE:
SHARE is a nationwide community that brings support, information and the benefit of
experience to women of all ages, races, and backgrounds facing breast and ovarian cancers,
and their caregivers. Free services include a helpline staffed by peers, support groups,
seminars on the treatment of cancer and living with it, and dedicated support from someone
who’s been there. www.sharecancersupport.org, facebook.com/SHARECancerSupport, Twitter:
@SHAREing, Instagram: @sharecancersupport #livelaughlunch40
Recent Press about SHARE:
Women Credit SHARE Cancer Support with Helping Them Get through Breast Cancer (PIX 11,
October 2016):
http://pix11.com/2015/10/23/two-women-credit-share-cancer-support-with-helping-them-get-
through-breast-cancer/
The Good Fight with Pat Battle: Cancer Help Hotline (NBC 4, January 2015):
http://www.nbcnewyork.com/on-air/as-seen-on/288764521.html
See page 12 for print articles including SHARE.
###
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SHARE by the Numbers: 2015
♦ SHARE’s staff and volunteers touched more than 40,000 people
affected by breast and ovarian cancers.
♦ SHARE’s Helplines handled over 6,000 calls from all 50 states.
♦ SHARE Ambassadors reached over 14,000 people in medically
underserved communities with life-saving information on symptoms,
risks and treatments.
♦ Over 2,100 Latina women facing breast and ovarian cancers
received vital support and education in their native language.
♦ Trained survivor-facilitators led 34 different groups at our NYC office
and throughout the New York City area in English, Spanish, and
Japanese.
♦ SHARE helped over 4,100 women with metastatic disease
through four telephone support groups, one in-person group, one-on-
one support sessions with a trained therapist, educational programs
and networking.
♦ SHARE has reached over 4,000 employees through its unique
Pink and Teal Corporate Seminars, which have been presented at
over 100 corporations.
5
Testimonials from SHARE’s Diverse Community
Breast Cancer Support
“Shortly after I was diagnosed with stage one invasive breast cancer at age 34, I began attending
support group meetings for young women with breast cancer at SHARE. The women I met allayed
my fears, gave me tips on how to cope, encouraged me, and understood my experiences in a way
that others couldn’t. It was so wonderful to sit in a room full of breast cancer warriors; it gave me
hope and made me feel less alone.”
--Mary Vetting. Mary is a 40-year-old woman whose mother died of breast cancer at age 55, after a
14-year battle with breast cancer.
“I was relieved to be able to share my fears and concerns with other women who truly understood...
SHARE, you were there for me in my time of need and I will always be grateful. Thank you.”
--Adrienne Rosen. Adrienne was diagnosed with breast cancer in 1999 and joined a SHARE
support group for newly diagnosed women. She later became a helpline volunteer and continues to
provide administrative support for SHARE.
Metastatic Breast Cancer Support
“Not only am I a breast cancer patient who attends the many support groups, lectures, phone-in
support groups, and Webinars that SHARE offers, I am also a volunteer! After my very first time
attending the ongoing breast cancer support group, I thought, ‘SHARE would be such a wonderful
place to volunteer!’ I work as a Helpline volunteer which is the most rewarding volunteer job I have
and I also help as an admin. I love SHARE because it has top-notch support groups led by people
who have actually gone through breast or ovarian cancer and are survivors. It is such a warm and
inviting environment and I always feel comfortable sharing what I am going through in the group.
Kudos to a fantastic organization! Keep up the great work, SHARE!”
--Sherri Niziolek. Sherri is a stage IV breast cancer patient and a volunteer on SHARE’s helpline.
“There’s nothing as healing as walking into a roomful of women who know exactly what you feel like
because they’ve been there themselves. The camaraderie, kindness and understanding is like
nothing I’ve discovered anywhere else. SHARE is like AA but for breast cancer survivors.”
--Catherine Gigante-Brown. Cathy was diagnosed with State 1, hormone-positive breast cancer in
the spring of 2013 and began attending SHARE meetings soon after her mastectomy and
throughout chemotherapy. She is currently a facilitator for SHARE’s aromatase inhibitors and
tamoxifen group. She has written extensively about her breast cancer odyssey (and the cherry-
blossom tattoo that covers her mastectomy scar!) for various media outlets.
LatinaSHARE
"Everything was turned around for me after I called SHARE. I wasn't afraid anymore. I felt 100
percent better knowing there are others who've been through this."
--Mirsa Morales. Mirsa first came to SHARE after she was diagnosed with breast cancer eight
years ago. She called SHARE’s helpline and then joined a support group.
(over)
6
Ovarian Cancer Support “My oncologist handed me a SHARE pamphlet and said, ‘Call these women. They're great.’ A few
days later I got up the nerve to call the helpline. It was the first time I had spoken with another
ovarian cancer survivor who was alive and doing well. She had gone through everything I was going
through, felt many of the same things I was feeling, and provided resources to connect with other
survivors in a local support group and on-line. By the end of that call I was filled with so much hope,
and I knew I was going to get through treatment.”
--Annie Ellis. Annie is living with ovarian cancer. She has been a helpline volunteer, program
facilitator, and support group leader with SHARE.
African-American Ambassador Program
"SHARE bridges the gap through inclusion. which ensures more women have access to information
& do not feel alone on the journey. Volunteering with SHARE gives me an opportunity to share my
gifts with diverse communities in New York State. It's gratifying when someone tells me my personal
testimony is encouraging and/or they feel empowered by the information on breast and/or ovarian
cancer I disseminated. When a support group member says they look forward to each meeting
because they are uplifted, I am fulfilled."
--Desiree Walker. Desiree is a 52-year-old two-time breast cancer survivor. She is outreach
coordinator for SHARE’s African-American Ambassador program and facilitator of SHARE’s
support group for African-American and Caribbean women.
Advocacy
“After I graduated from Project LEAD in 2000, I joined SHARELeaders, that group of trained
advocates who met monthly to discuss emerging science and research issues, led by Helen Schiff,
with whom I still work, nearly 20 years later!...As an independent research advocate, SHARE has
given me a ‘home base,’ a community of like-minded advocates with whom I can share ideas and
seek support.”
-- Musa Mayer. Musa is a founding member of the Metastatic Breast Cancer Alliance and
continues to support SHARE by conducting presentations about metastatic breast cancer.
“SHARE entered my life when I needed help with the psychosocial aspects of the disease in women
newly diagnosed… There is no doubt that SHARE has contributed much more to my growth as a
surgeon, advocate and woman than I have given to them. I know that without SHARE, I wouldn't
have become the fine clinician I am now.”
-- Deborah Axelrod. Deborah is a SHARE Board member and a breast surgeon at NYU. She has
won multiple awards for her breast cancer work.
7
40 Years in Breast and Ovarian Cancer: An Overview
from Dr. James L. Speyer, MD, Gynecologic Oncologist & Medical Director,
NYU Clinical Cancer Center
The last forty years represent the greatest time of change in the entire history of medicine. This is
particularly true for cancer and specifically breast and ovarian cancer. The most fundamental
change is better understanding of the biology of these diseases and recognition that they are each
made up of different subtypes with different biology and different treatment. We are better able to
recognize the type of cancer each patient has, not just the anatomic site where they originated, and
give more specific and effective treatment. Often this is also less toxic.
A major advancement has been better and earlier detection with better mammograms and
ultrasound and the appropriate use of MRIs. While there are controversies about the guidelines, it is
clear that more women are being diagnosed with earlier stage cancers giving them a better chance
for cure.
----------------------------------------
Breast Cancer
As for treatment, I’ll begin with surgery. Forty years brings us through the period of far fewer
mastectomies with less lymph nodes dissections and side effects, especially lymphedema.
Radiation techniques have been dramatically refined with often shorter treatment regimens; they are
more highly focused with few side effects to normal tissue and better results. At the same time there
have been great advances in reconstructive surgery with better cosmetic effects. And the venue of
treatment has changed. Women now have their breast surgery in outpatient ambulatory centers or if
inpatient stay is necessary, it is usually only a few short days compared to the five to seven day stay
that was the norm.
With better understanding of biology and the development of many new drugs there has been
dramatic progress in the treatment of advanced/metastatic breast cancer and in the use of
adjuvant/preventive therapy. In hormonal therapy we have the introduction of fulvestrant and then
the aromatase inhibitors which work better in postmenopausal women and which provide a number
of treatment options. We also have new chemotherapy drugs: anthracyclines, taxanes,
capecitibine, erbiulin, vinorelbine, TDM1, ixempra to name a few. With the identification of the HER 2
receptor on some cancers we had the development of first trastuzumab, then lapatinib and neratinib
and now pertuzumab resulting in dramatic responses, better quality of life and prolonged survival.
More recently, trials have shown the advantage of combining hormonal therapies with drugs that
block specific signaling pathways such as everolimus or palbociclib. Applying these treatments in the
adjuvant prevention treatment has resulted in fewer recurrences and the ability to tailor these
treatments to the type of breast cancer the patient has. One size does not fit all.
(over)
8
Throughout all of this supportive therapies have improved, reducing pain or nausea, controlling
blood counts with fewer treatment related infections. There is now an enhanced understanding of the
biology and treatment of hormonal and sexual side effects of treatment.
Ovarian Cancer
Changes in ovarian cancer have undergone a similar transition. Again better understanding of the
biologic subtypes of disease is the basis for advances. While we still lack adequate screening tools,
imaging with CAT scans, PET scans and MRI can define earlier and smaller disease. The
biomarker CA 125 is an excellent tool for following disease. Surgical techniques, often with
laparoscopic approaches means less morbidity and shorter recovery times. The introduction of first
the platinum drugs and then the taxanes revolutionized the systemic treatment of the disease with
more responses and longer survival. Locoregional therapy with intraperitoneal therapy has
provided improved outcomes in some patients. More drugs such as doxil and topotecan exist for
second line therapy.
----------------------------------------
Today we are entering a new era of target immune therapy with antibody drugs that help the body’s
immune system to recognize cancers as foreign and attack them. Early responses have been
observed in clinical trials in both breast and ovarian cancer.
In forty short years we have so much more understanding of the cancers we treat and so many new
forms of therapy. The pace of biology and medicine is steadily increasing. I have been privileged to
witness these changes and to offer them and better treatments to our patients. The results speak for
themselves. We have much more to learn and to do, but this is a time of great optimism. The best
is yet to come. The wonderful advances in the medical arena have helped us to move away from the
one size fits all treatments of yesterday. Today there is more of an emphasis on patient participation
in the shaping of the treatment programs and that makes SHARE even more important, as it enables
those who’ve been down the road before to help patients find their way through their cancer
treatment.
9
SHARE Milestones
1976 Dr. Eugene Thiessen, a New York-based breast cancer specialist, announces on the
Arlene Francis Radio Show the creation of a support group for breast cancer patients.
Twelve women show up, including Lee Miller. Miller, a social worker and counselor, agrees
to guide the sessions along with Dr. Thiessen as advisor. Named Self-Help Action & Rap
Experiences, SHARE is born.
1977 The SHARE hotline is established. Volunteers answer it on a rotating basis, with the phone
stored in someone’s closet, and the bill paid with a small donation from each volunteer.
1978 SHARE incorporates as a 501(c)(3) organization and holds its first educational program,
“Sexuality and Breast Cancer,” presented by a Payne Whitney psychologist.
1983 SHARE begins Wellness Programs, including yoga, nutrition, and exercise programs.
1986 The first SHARE office is opened.
1987 SHARE offers its first support group for women with metastatic disease.
1991 The first SHARE-A-Walk fundraiser is held, raising the public’s awareness about breast
cancer and bringing in $125,000 for SHARE.
SHARE joins the National Breast Cancer Coalition (NBCC) board, eventually bringing the
largest New York State contingency to lobby for breast cancer funding in Washington, DC.
SHARE starts offering support groups for women facing ovarian cancer.
1994 LatinaSHARE is founded to offer support and educational services to Spanish-speaking
women facing breast cancer.
1995 Bess Myerson pledges to donate $100,000 to SHARE to enhance SHARE’s Ovarian
Cancer Program.
A small task force of SHARE women visits Israel, Poland, Ukraine, and the Czech
Republic to share their experiences with breast cancer and to encourage women to take
an active role in prevention, detection, and treatment of the disease.
1996 Lee Miller starts SHARE’s first bereavement program, which includes support groups and
an annual Memorial Ceremony.
SHARE’s Ovarian Cancer Program Hotline is established.
(over)
10
1997 SHARE is a founding member of the Ovarian Cancer National Alliance (OCNA).
SHARE’s hotline volunteers answer more than 7,000 calls in nine languages.
SHARE starts SHARE Leaders, a group of breast cancer survivor/advocates who are all
graduates of National Breast Cancer Coalition’s Project Lead program, to encourage
survivors to offer the patient perspective to the breast cancer research community.
1998 SHARE’s Bilingual Survivor Patient Navigator (SPN) Program is started at the Breast Clinic
at Bellevue Hospital, ensuring that patients diagnosed with cancer have a trained survivor
to support them the moment they are diagnosed.
2003 SHARE’s Side-by-Side program is established to facilitate communication between doctors
and patients.
2004 SHARE hosts its first annual “A Second Helping of Life” tasting event, featuring New York
City’s top women chefs.
2005 SHARE’s dedicated New York State Ovarian Cancer Hotline starts with funding from the
New York State Attorney General’s office.
2007 The SHARE Leaders Program receives a Best Practices Award from the National Breast
Cancer Coalition.
SHARE further develops services for women facing metastatic disease. Support group
sessions for this population now number 9/month.
2008 Ovarian cancer survivors represent SHARE as the first patients ever to present to the
annual meeting of the Society of Gynecologic Oncology (SGO).
2009 SHARE begins its Pink and Teal Corporate Seminar Program, educating employees in
corporations around the city about breast and ovarian cancers and empowerment of
patients.
2010 SHARE receives a three-year grant to develop a novela on Breast Cancer Survivorship, a
unique communications tool to reach Latinas. The novela ultimately reaches over 50,000
people and counting.
SHARE creates an Ambassador Program to reach women in underserved African-
American and Latino communities, which eventually reaches 9,000 women annually.
2011 SHARE presents its first poster, on the impact of the novela, at the annual San Antonio
Breast Cancer Symposium.
(over)
11
2012 LatinaSHARE is invited to present the novela in Bolivia at the 1st International Conference
for Patients with Cancer with Dr. Mauricio Kotliar.
2013 LatinaSHARE is invited by Georgetown Lombardi Comprehensive Cancer Center to
participate in an important quality of life intervention funded through the Patient Centered
Outcomes Research Institute (PCORI).
The SHARE Caregiver Circle for Family and Friends is founded to support family, friends,
and caregivers of breast and ovarian cancer patients and survivors.
SHARE conducts its first educational webinar, reaching people around the country with
information about cancer. SHARE webinars currently reach people all over the world,
including Europe, Canada, Australia and New Zealand.
2014 LatinaSHARE celebrates 20 years of providing supportive and educational services in
Spanish for Latinas facing breast and ovarian cancers.
SHARE’s Helpline has grown to answer calls in all 50 states of the United States, Canada,
and in some countries in Europe and Latin America.
SHARE offers its first Japanese language support group for women facing breast cancer.
2016 SHARE reaches 40,000 women and their families affected by breast and ovarian cancers,
including 14,000 women in underserved communities.
12
What Breast Cancer Really
Looks Like By Liz Brody
September 10, 2015
Glamour Magazine
Behind every pink ribbon is a real woman with a real, unique story. Photographer Christine
Benjamin helps these five share theirs.
In a spectacular feat of bad timing, Christine Benjamin found out she had breast cancer on
the same day her friends were planning a surprise party for her thirty-seventh birthday. As
everyone prepared to meet up that night at a clubby New York City eatery, she was
checking out of her doctor's office, trying to absorb the devastating news.
Her partner, Karen Orczyk, who'd come along to the appointment, confessed the party
plans. "We called everybody before heading to the bar," Benjamin remembers. "There was
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a lot of drinking and a little bit of crying. And actually, the celebration turned out to be the
best thing that could have happened. My friends offered instant support."
A social worker, Benjamin had grown up watching breast cancer blaze through her
extended family, killing women and leaving kids behind (her father grew up in an orphanage
after losing his mother to the disease). When she found out her tumor was aggressive, she
had her ovaries removed and started urging relatives to get tested for BRCA gene
mutations (she has one). "But some years later I was struggling with my body image and
with fears that the cancer would come back," she says. While taking a photography course,
she started experimenting with self-portraits and discovered that the images shifted her
confidence—in a positive way. "I wondered if a similar process would work with other
people." Since then she's used a technique called photo therapy, which combines listening
sessions with portrait taking, to help women with breast cancer, eating disorders, and
sexual trauma. "When a subject looks at her images, she often recognizes what she
hadn't been able to see in herself before," says Benjamin, now 52, healthy, and
heading up the breast cancer program at the advocacy and support group SHARE.
"Many discover they are enough just as they are—lovable enough, beautiful enough, worthy
enough. That can be a life-changing moment."
The five women on these pages, all of whom have been diagnosed with breast cancer,
know that firsthand. Each has her own grief, her own joy. And yet each saw in the photos
Benjamin took of her something new, someone more powerful. An accomplished mother. A
fearless advocate. A wife with the craziest story. Let them tell you in their own words.
"To have this photo with my girls is almost
magical. I'm doing great, but if I don't make it,
at least they will always know how I looked at
them."
—Jamie Pleva-Nickerson, 36, Danbury, Conn., diagnosed
six years ago (with Graceanne and Teresa)
When I was 20, my oldest sister, Tracy, was diagnosed
with breast cancer. A force of nature, she fought it fiercely
for years. At 28, when I learned I had a BRCA1 gene mutation like her, I said, "Screw it,"
and scheduled a prophylactic double mastectomy. But right before surgery they found a
14
lump. I had to call my mom in the ICU as she was sitting next to my sister, who was losing
her battle, and say, "I have cancer too."
I knew I wanted kids and decided to freeze my eggs before chemo. I went to get them
retrieved the same day I read my sister's eulogy at her wake. I'd been trying so hard to
pretend everything was OK after getting diagnosed. But as I looked at her casket, it hit me:
I'd just watched Tracy fight breast cancer—the same type I had—and die from it. If the
strongest person I knew didn't make it, how the hell was I going to?
I started dating my husband while I was going through chemo. (The clincher was an invite to
a Yankees game.) And five years after I froze my eggs, my cancer scans were clear and I
went back to the clinic to try to get pregnant. A nurse remembered me and said, "I know a
part of your sister's here with us, and we're all saying a prayer for you right now." Everyone
had tears in their eyes.
I teared up during the photo therapy too. I felt so guilty for being happy, because my sister
doesn't get that chance. I realized that, honestly, I still haven't dealt with losing her. She was
my best friend, and if I go down that hole, I'm so afraid I won't be able to climb out. We were
supposed to take the power from cancer, and it still got us. But I never thought I'd be able to
have children after getting diagnosed. And after everything I've been through, to be able to
take this photo felt like a triumph. Because if there ever was an ultimate eff-you to cancer, it
was November 5, 2014, when our twins, Gracie and Tessa, were born. They are absolute
perfection.
"Only 2 percent of women like me survive five
years. But hey, that 2 percent could be me.
And that's who I see in this photo."
—Beth Fairchild, 36, New Bern, N.C., diagnosed one year
ago
On May 12, 2014, I went in for a hysterectomy. I had these
weird growths on my ovaries and figured I'd be fine. But
after the surgery, a specialist told me I had two years to live,
give or take. I had breast cancer—and it was in my pelvis. When I heard that, it was like the
oxygen had been sucked out of the room. All I could think was, I'm only 34 years old. I have
two kids at home; this can't be right.
15
I came home to die. I was in so much pain. After healing from the hysterectomy, I had
chemo. There was no need for a mastectomy—my cancer had already spread.
Every October, when the world celebrates survivors with pink ribbons, I get infuriated. Very
little research is being funded for metastatic disease [which has spread incurably] like mine,
and yet it kills every single one of the 40,000 women who die of breast cancer every year.
I felt that outrage during the photo shoot, but I also thought about how serendipitously my
life has worked out: I had my daughter Leigh Ann at 19, and although I missed out on a lot
in my twenties, today I feel fortunate to have been with her for 16 years. And now we're
adopting Cylest, her classmate who needed a home. And there's my husband, Marc. When
the doctor first told me I had cancer…just the look on his face—the fear, the desperation. If
I'd ever doubted the way he felt about me, I saw it then. What has really pulled me out of a
dark space is working with Metavivor, a nonprofit that funds research for stage IV breast
cancer; it gives me a purpose.
To be frank, I am afraid—of being sick, of wasting away. I'm afraid of Leigh Ann's getting
breast cancer when I'm not there to hold her hand. That, more than anything, breaks my
heart. But I tell my kids, "Don't be upset. We've got this. When we're getting down to the
wire, I'll let you know." And when the time does come, we'll see. No one knows what's on
the other side. I'll go check it out. It will be my next adventure.
"I didn't expect to cry. But I was looking at these
two girls, thinking how they're best friends—and
just how blessed I am."
—Heather Salazar, 41, Troy, Ohio, diagnosed 10 years ago
(center, with daughters Cara and Lexi)
Growing up in Tipp City, a tiny Ohio town, I had these big plans.
Then at 18 I met my husband; by the time I was 28, we had
three kids. I was going to college in between, just trying to finish, when my mom's neighbor
told me she'd been helping a woman who was only 23 and battling stage IV breast cancer.
Did I know anybody who would want her baby daughter?
After four nights of tossing and turning, I said to my husband, "I think we're supposed to
adopt this baby." So we went to the Meijer, a megastore in Dayton, and waited in the
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grocery section—that's where the woman, Alexis Preston, wanted to meet. She was
dressed up with her wig on, thin as a stick. "I'm looking for someone to take my baby," she
said. "I just want to know that you're going to love her." My husband melted right there.
The baby, also named Alexis—we call her Lexi—was 10 months old when we took her. By
then Alexis could barely care for herself. Over the next year the four kids and I sometimes
took her to chemo. "I should be on American Idol," she'd say, always spunky and proud.
The last time I saw her—bald, 80 pounds, and only 24—I just sobbed. She died a week
later.
We adjusted and all moved on. When I was 31, my husband and I went away for our
anniversary. I was taking a shower to get ready for our trip and thought, I should probably
do a breast self-exam—Alexis was super young. And I felt this hard lump. It was cancer.
When the doctors told me, I was screaming in my head, What? My kids are going to lose
their mother? And Lexi's going to lose two moms?
But I was so lucky. My cancer responded to Herceptin. And 10 years later Lexi is 14, and
Cara 15, and they act like twins. During the photo therapy I got emotional reliving my whole
story, but I also felt that it's the story of all of us. Had it not been for Lexi's mom, I would
never have done that self-exam. She saved my life.
"I have no breasts. And my body is gorgeous.
That's all there is to it."
—Emily Jensen, 34, Seattle, diagnosed three years ago
I never considered getting a reconstruction. Never. At 31
with cancer, my body was going through enough as it was.
Also, I loved my breasts. I wanted them or nothing.
At first I thought I'd be in the minority, and I was shocked to
find out that 58 percent of women don't reconstruct. But we
don't see bodies like ours, because people are ashamed of them. One woman told me she
hadn't shown anyone her bare chest in 16 years. I was like, How is that possible? So I
launched a website called Flattopper Pride to help people accept themselves.
I grew up with amazing body confidence, but to feel fantastic after cancer took me a long
time. Once I started dating again, I was terrified that people would look at me and think I
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was—I hate to use this term—a monster. And I always felt like I needed to confess that I
was a cancer patient, that I don't have breasts. As a queer person I felt like I was coming
out of the closet all over again. But not once did I get negative feedback. Never. So that's
pretty powerful.
I do worry that my cancer could come back; that came up for me at the photo shoot. But I
think of what my brother said when I asked why he wasn't more scared during my
treatment: "Emily, I know you. And I know cancer can't survive you."
"I'd felt self-conscious about my scars. But
there's still beauty there. I feel good, I really
do."
—Kelly De Vose, 36, Philadelphia, diagnosed four years ago
One day I was at work, doing data management for clinical
drug trials and looking out the window, daydreaming.
Suddenly I said to myself, Thiscan't be the way. I still
remember that moment: I turned my chair around and googled acting classes. The next day
I signed up.
By early 2011 I had everything planned. A close friend and I were moving from Philly, and I
was going to be a big theater star. I was like, New York, here I come! Two weeks later I got
the news: "You have breast cancer." I was 32.
I called my twin sister, Karen, bawling and crying. And then I called my family—my mom
raised six of us, and we're all close. I said, "I do not have cancer. We have cancer. So get
your schedules together."
All I remember about the double mastectomy is waking up and asking whether the Eagles
won their game. My brother moved in to help me for five months as I completed chemo. (All
my sisters were screened and are OK.) Going through cancer is awful. I'm single, and dates
would say, "Oh man, do I even want to start something with you?" Also, I felt like I'd lost a
part of my womanhood. And it hurt to look at the scars on my inner thigh where they took
the fat to reconstruct my breasts, so I always hid them, wearing shorts even at the beach.
It wasn't until this May, when I was in Turks and Caicos with my family, that I looked around
and saw everyone frolicking in the water. Suddenly I just took my shorts off and ran in too.
18
They were like, "Kelly, it's about time. You've worn those shorts for four years!" The water
was great. I felt liberated. On top of the world.
And the photo shoot really hit that feeling home. Despite what your body's gone through,
despite how different it is, there's still a beauty there, and that's what I saw when I looked at
the photos. I felt really, really happy. Those images filled that hole I felt after losing my
breasts—and so much else—and brought back the joy I have been missing. They showed
me the beauty that I failed to see.
What You Can Do
How to support those with breast cancer and take care of your health:
If you're under 40: Get to know your breasts (best in a soapy shower the week after your
period), and if you notice a change—"your hands will usually tell you, so trust them," says
Lauren S. Cassell, M.D., chief of breast surgery at Lenox Hill Hospital in New York City—
see your doctor. It's rare to get breast cancer in your twenties or thirties, "but don't let
anyone tell you you're too young if you feel something."
If you're over 40: Experts disagree whether women should start regular mammograms at
40 or 50, so talk to your health care provider about what's right for you. If you have a family
history of the disease: See a specialist—you may need earlier screenings and different
tests.
19
The Double Mastectomy Rebellion: Defying
Doctors, More Women with Breast Cancer
Choose Double Mastectomies
By Lucette Lagnado
July 10, 2015
The Wall Street Journal
After she was diagnosed with cancer in her left breast last fall, Chiara D’Agostino
turned to two holistic healers, a psychotherapist, a massage therapist, a hospital social
worker, a meditation class and two support groups to help her navigate a frightening
new world.
One piece of advice she doesn’t plan to follow: her doctor’s. The surgeon
recommended a single mastectomy along with chemotherapy and radiation. But many
women in the support groups argued that she should get both breasts removed.
One warned Ms. D’Agostino that her healthy breast would eventually sag while the
reconstructed one stayed perky. Others, trying to be helpful, would lift their tops to
show off their new figures. “I was like, ‘You are crazy. I would rather keep my
breasts,’ ” said Ms. D’Agostino, a 43-year-old former Italian teacher from New
Jersey. But after hearing the message for months—and discovering that her insurance
would pay for the second procedure—she decided to have her healthy breast taken off
and reconstructed too.
Researchers have tracked sharp increases in double mastectomies, even among
women at low risk for cancer to develop in the other breast and for whom the radical
procedure offers no additional survival benefits. Doctors call it a profound shift in the
prevailing medical culture and some have begun to question whether the field should
reconsider performing what amounts to an amputation with little evidence to support
its efficacy.
20
“This is an epidemic,” says Dr. Ann Partridge, an oncologist at Dana-Farber Cancer
Institute in Boston.
An analysis of the National Cancer Data Base revealed that 12% of women who
received surgery for Stages 0-to-3 breast cancer in 2012 underwent a double
mastectomy, up from 2% in 1998. Nearly 30% of women under age 45 opted to have
both breasts removed in the most recent year, according to the analysis by Dr.
Katharine Yao, director of breast surgery at NorthShore University HealthSystem near
Chicago.
A constellation of factors have contributed to the surge. Most public and private
insurers have been mandated since 1998 by federal law to cover reconstructive
surgery after a mastectomy. The doctor-patient relationship has changed, and
physicians are reluctant to tell women what they should or shouldn’t do. Advances in
plastic surgery promise more attractive artificial breasts than ever before.
Then there is what doctors dub the “Angelina effect.” The actress Angelina Jolie,
whose own mother died of cancer, announced in 2013 that she had undergone a
preventive double mastectomy after a blood test revealed that she had a genetic
predisposition for breast cancer. In an op-ed piece she said, “I feel empowered that I
made a strong choice that in no way diminishes my femininity.”
There is a general consensus that such procedures dramatically decrease the risk of
breast cancer for genetically vulnerable women like her, who represent a minuscule
0.25% of the U.S. population, according to Dr. Kenneth Offit, chief of the genetics
service at Memorial Sloan Kettering Cancer Center in Manhattan. After the actress’s
announcement, women across the country flocked to get tested.
But doctors say they are also seeing increases in the numbers of low- or average-risk
women who, when diagnosed with cancer, opt to have their healthy breast removed
along with their stricken one, a procedure called a contralateral prophylactic
mastectomy. “There are women who have come to think of their breasts as the
enemy,” says Dr. Offit.
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A mounting body of medical literature is arguing against such drastic surgery. The
procedure virtually eliminates the already-tiny chance that cancer will develop in the
remaining breast. But it carries its own significant risks of complications such as
infections. Meanwhile, doctors say, returning cancer is much more likely to spread or
metastasize elsewhere in the body, such as bones, the liver or the brain.
Dr. Steven Katz, a researcher at the University of Michigan who has published several
studies on double mastectomies, said the rate of the cancer recurring elsewhere in the
body is as high as 13%. “Women should be focusing on staying alive, which has
nothing to do with taking out the other breast,” he said.
A groundbreaking study of nearly 190,000 California women with breast cancer led
by Stanford University oncologist Allison Kurian revealed that survival rates weren’t
any better for women who opted for double mastectomies than those who chose a
breast-saving lumpectomy with radiation. Dr. Kurian says her database study raises
the question of “whether the outcome of contralateral prophylactic mastectomy is
worth its costs to a woman’s quality of life and to society.”
Many women who choose the surgery say any risk of returning breast cancer is too
high. They say they are grateful to be free of the mammograms, MRIs and doctors’
appointments necessary to monitor the other breast and the anxiety that arises every
time a test shows a possible anomaly.
“This is about living your life without looking over your shoulders,” says Jennifer
Finkelstein, who was diagnosed with breast cancer in 2005 when she was 32 years
old. She had a single mastectomy and reconstructive surgery. Still cancer-free five
years later, she decided to have her healthy breast removed against the advice of her
oncologist.
Ms. Finkelstein said her instincts told her the surgery could protect her—and she no
longer sees unmatched breasts in the mirror.
The surgeries weren’t easy. She has needed by her own count five or six operations or
procedures involving both breasts. One surgery left her with a tattooed nipple in the
22
wrong place. But Ms. Finkelstein says emphatically that she doesn’t regret her
decision. She recently founded a New York nonprofit organization, 5 Under 40, which
provides financial and emotional support for young women diagnosed with breast
cancer.
Jennifer Finkelstein had a single
mastectomy in 2005 after a cancer
diagnosis, then chose to have her
healthy breast removed five years
later for peace of
mind. ILLUSTRATION: ALLISON
MICHAEL ORENSTEIN FOR THE WALL
STREET JOURNAL
White women, in particular
younger white women, are
twice as likely to undergo
the surgery compared with
other racial groups,
according to a study by Dr.
Yao of NorthShore using the National Cancer Data Base, which captures roughly 70%
of newly diagnosed cancers in the U.S.
Karen Hurley, a New York-based psychologist who specializes in treating breast
cancer patients says peer pressure contributes to the rise. “You see almost this
proselytizing,” she says. Dr. Hurley believes women who go ahead with the surgery
are often regarded as brave and in control. “At one point, empowerment was keeping
your breasts, and now it is removing them.”
After Dr. Hurley was herself diagnosed with Stage 3 breast cancer in one breast, she
had a single mastectomy and reconstruction but chose to keep her other healthy breast
because she was familiar with the risks of complications.
Historically, women with breast cancer faced a nightmarish treatment and few options
except for radical mastectomy, a surgery that included the removal of the breast,
underlying chest muscles and axillary lymph nodes and often left them disfigured.
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In the 1960s and 1970s, University of Pittsburgh doctor Bernard Fisher did seminal
research on treating breast cancer using a lumpectomy, a delicate operation that
involved removing the cancerous material from a breast along with some surrounding
tissue. Dr. Fisher concluded that a lumpectomy followed by therapy such as radiation
was as effective as a mastectomy in treating cancer. Dr. Fisher was hailed as a hero.
But mastectomies were still common, and women were still left scarred. In 1998,
Congress passed the Women’s Health and Cancer Rights Act, which mandated that
most health insurers cover reconstructive surgery for women who had mastectomies.
The legislation, pushed by former New York Sen. Alphonse D’Amato, helped women
who couldn’t afford reconstruction and combated the notion that reconstructive
surgery was strictly cosmetic.
It had another effect. In an analysis using 1998 to 2011 data in the National Cancer
Data Base, Dr. Evan Matros, a Sloan Kettering reconstructive surgeon, and other
researchers found that as the number of double mastectomies rose, there was a
correlative decline in lumpectomies and single mastectomies.
In other words, even as medicine has moved more toward minimally invasive
surgeries in other arenas, many women with breast cancer have been moving in the
opposite direction, said the study, which was published in May in the journal Plastic
and Reconstructive Surgery.
The surgeries can be costly. According to data from a major private health insurer a
single mastectomy—not including hospitalization—averages $8,500; a double
mastectomy costs 24% more, or $10,500. Reconstruction of each breast costs
$10,000—or nearly three times as much as a simple cosmetic augmentation
procedure, which typically isn’t covered by insurance. Altogether, the average cost of
a double mastectomy with reconstruction was 65% higher than removing and
rebuilding one breast alone—$30,500 versus $18,500.
Recent years have seen significant advances in breast reconstruction, leading more
women to have double mastectomies. Doctors have developed techniques not simply
for better implants, but also to rebuild a woman’s breast using her own tissue taken
24
from other parts of her body. These operations can take several hours for each side,
but result in a more natural look and feel.
Still, even the most attractive outcome leads to lack of sensation and often scarring.
While many women want to preserve their nipples, it isn’t always possible because of
the fear that the cancer could spread in the area.
Breast surgeons tend to be troubled by the trend toward double mastectomies. Dr.
Michael Miller, chief of plastic surgery at the Ohio State University Wexner Medical
Center in Columbus, says he doesn’t hesitate to argue with women who don’t have
high risk factors yet opt to get both breasts removed. “I say, ‘Why don’t we simply
remove your foot? It would make as much sense to remove your foot as to remove
your breast. Either would contribute an equal amount to your survival.’ ” On the other
hand, he says there is a genuine need for reconstruction among women whose cancer
leaves them no choice but to have a mastectomy, and hospitals should offer it.
What’s more, he adds, “It is very lucrative.” In a June 2014 study that appeared in the
Plastic and Reconstructive Surgery journal, Dr. Miller calculated that his hospital’s
net income from breast reconstruction surgeries grew by 7,264% from 2004 to 2012,
from a very low base, while his team of plastic surgeons saw a 1,211% growth in
professional net income.
While there is general consensus about the science, there are significant divisions
about what doctors should do. Some want clearer guidelines that could limit the
procedure and others even suggest that insurers should stop covering it except in high-
risk cases. But others argue that they can’t refuse a well-informed woman.
“We are no longer practicing medicine in a paternalistic fashion, and at the end of the
day, it is the patient’s decision,” says Dr. Deanna Attai, president of the American
Society of Breast Surgeons and a surgeon affiliated with UCLA Health.
Dr. Attai believes many double mastectomies are medically unnecessary—and indeed
carry a heightened risk of serious complications—but thinks that since medicine can’t
25
guarantee cancer won’t develop in the healthy breast, she is obligated to defer to the
patient’s wishes.
“The patriarchal allegation has moved 180 degrees,” says Sloan Kettering oncologist
Dr. Clifford Hudis. “It used to be, ‘How dare you say my breast isn’t important and
make me lose a breast to mastectomy?’ Now, decades later, the allegation is, ‘Why do
you care so much? It is my breast.’ That is a humbling perspective.”
For women, too, the new bedside manner may be disorienting as well as empowering.
Jacqueline Lowey, of East Hampton, N.Y., says all the information can be hard to
take in during the terrifying moment of a cancer diagnosis. In 2012, she was told she
had a Stage 0, noninvasive cancer, along with traces of a second cancer marker. She
says she was offered three options: a lumpectomy followed by radiation and the drug
Tamoxifen; a single mastectomy of the affected breast; or a double mastectomy.
Doctors said that a lumpectomy would offer her the same chance of survival. But she
says she was also told that the breast-sparing procedure might leave her vulnerable to
a return of the disease. Thinking of her 7-year-old son and 10-year-old daughter, and
unwilling to submit to radiation, Ms. Lowey asked for a double mastectomy.
“There is a lot of power given to patients, and it is overwhelming,” she said. “You
want someone to tell you what to do, but basically, they lay out options, give you
odds, give you all the information, and you have to make the decision.”
While some women express satisfaction with their choice, others say they didn’t
anticipate the profound ramifications of a double mastectomy. On a recent April
morning, Lesa Ann, a nurse in rural Ohio, watched television news shows reporting
that actress Rita Wilson had decided to have a double mastectomy. Ms. Ann was
furious.
Ms. Ann had a double mastectomy after she was diagnosed in 2010 with cancer in one
breast. “My feeling was, I had cancer, get rid of it. I didn’t want to have that stress
again.”
26
But her stress increased. “The aftermath is unbelievable,” she says. The doctors told
her they were unable to do a reconstruction because her smoking habit made such a
procedure too complicated. Now she feels disfigured, and has since coped with “a bad
self-image, depression and no sex drive,” she says.
The psychological pain has been so great that only now, five years later, is she able to
come to grips with what happened. She believes that women don’t fully understand
the risks and that celebrity endorsements glamorize the procedure.
“You don’t come out in your prom dress looking all happy and cheery,” she says.
Ms. D’Agostino, the former Italian teacher, had her first
mastectomy, to remove the ailing breast, in April. Even
in the weeks leading up to the procedure, she was still
wrestling over whether to have her other breast removed.
One evening, at a support group sponsored by
SHARE, a Manhattan-based breast cancer
organization that she especially values, Ms.
D’Agostino asked a woman who had had a double
mastectomy if she still had any sensation in her
breast area.
Chiara D’Agostino ILLUSTRATION: ALLISON MICHAEL ORENSTEIN FOR THE
WALL STREET JOURNAL
“There is no feeling left at all,” Susan Levin replied.
It was a sobering experience for Ms. D’Agostino, who was saddened at the prospect
of losing a key aspect of her sexuality.
Ms. D’Agostino received conflicting medical advice. One breast surgeon suggested
she could have a lumpectomy and preserve her breast. But the one she chose, and
another she consulted, both argued for a mastectomy. None of the surgeons suggested
a double mastectomy.
27
Her surgeon, M. Michele Blackwood of Saint Barnabas Medical Center in Livingston,
N.J., says that while she explains to women that removing a healthy breast doesn’t
boost survival rates, there are other reasons to support the decision. A woman can
emerge from the procedure feeling good about her body, Dr. Blackwood said. “She
swims and she runs and she goes to the gym and she gets undressed,” she said.
After she had her mastectomy in April, Ms. D’Agostino received some promising
news. The pathology on the removed breast showed chemotherapy had worked and
there was no trace of cancer. Doctors decided that she wouldn’t need radiation.
During the mastectomy, her plastic surgeon inserted an “expander,” or temporary
device to make room for a cosmetic implant. She has decided to wait until September
to take the next step, removing the other healthy breast. After that, both will be
reconstructed. She is determined to go ahead; while she waits, she is developing a
blog about her experience, “Beauty Through the Beast.”
She has no illusions: She knows that the next surgery won’t improve her odds. She
doubts that it will bring her peace of mind. It is about achieving “symmetry.”
“Look, I am 43 and single,” she said. “I want to feel attractive, and I want my breasts
to match.”
See https://www.youtube.com/watch?v=JjhF5ZkqH6E for the Wall Street Journal’s
corresponding video on Chiara D’Agostino, which includes footage of a SHARE
support group.
