BREASTMATTERS - A BETTER WAY Inside - Johns Hopkins Medicine

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BREASTMATTERS - A BETTER WAY Inside - Johns Hopkins Medicine
THE JOHNS HOPKINS KIMMEL CANCER CENTER

BREAST MATTERS                                   2020/2021

                           [Inside]
                           A BETTER WAY
                           Harnessing the Power of Breast Cancer Prevention

                           WOMEN’S WELLNESS
                           ANGELA’S STORY
                           AND MUCH MORE
BREASTMATTERS - A BETTER WAY Inside - Johns Hopkins Medicine
THE JOHNS HOPKINS KIMMEL CANCER CENTER

  BREAST 2020/2021
         MATTERS
                                                                      UPCOMING EVENTS
                                                                      Retreat: A Journey of Courage and
                                                                      Hope for Women with Metastatic
                                                                      Breast Cancer
                                                                      April 12-14, 2020
                                                           page 2     Support Groups, webinars and more
                                                           Women’s    on page 12

                                                           Wellness

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   A BETTER WAY                                                       Blogs
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On the Cover: Leslie Ries and her daughters, Carly and Emily
BREASTMATTERS - A BETTER WAY Inside - Johns Hopkins Medicine
Li v i n g                                           with Metastatic
                                                      Breast Cancer
Angela always made sure she went for her annual mammogram.
                                                                                                       Angela’s
Often times, the results showed spots that were suspicious for                                                           story
cancer, but she said it always turned out to be a false alarm.

SO, IN 2013 when the then- 54-year-old     chalked it up to the strenuous remodel-    and Pain Program began treatments
received several telephone calls about     ing process. She went to see a doctor,     that got it under control so she could
her mammogram, she assumed it was          who said it was bursitis and began         begin radiation therapy.
the same scenario. At the time, her pri-   treatment.                                      Surgeon Dan Sciubba then removed
ority was caring for two siblings who          She didn’t give cancer a thought and   cancerous tumors that spread to verte-
had both suffered strokes.                 neither did the doctor. Given the work                               brae in Angela’s
    “They were so persistent, so I         she was doing in her home, bursitis                                  back. When a
thought I better call them back,” says     seemed to make sense. However, when                                  small dot that ap-
Angela, but she decided to wait until      the pain became so severe and unre-                                  peared on follow
her brother and sister were better.        lenting that it kept her up at night and                             up scans began to
    When she finally scheduled time to     made it almost impossible to walk, her                               grow, Sciubba op-
see her doctor, the news was shocking.     husband took her to the emergency de-                                erated again.
“He told me I had breast cancer,” says     partment of the hospital where she was                                   “I’m so glad I
Angela. Her husband went with her to       first treated for cancer. Angela was                                 came to the
the appointment, and she recalls that      shocked when she received the news         KatiePapathakis,C.R.N.P.  Kimmel Cancer
he began to cry when the doctor deliv-     that the pain was not bursitis or an-                               Center,” says Angela
ered the news. Angela remained stead-      other strain or injury. Instead, her       who says she and her husband are
fast, however. “I was ready to do          breast cancer had returned, and worse      grateful to the community physician
whatever I had to,” she says.              yet, the source of her pain was from       who advised us to come here. What a
    Her cancer was diagnosed early,        cancer that had spread to her bones.       difference they have made. I went from
and her doctor referred her to a com-          Radiation therapy was recom-           a wheel chair, to a walker, to a cane, to
munity hospital, where she had a mas-      mended, but the pain was so severe,        nothing,” she says. A car accident
tectomy, radiation therapy and             Angela could not lay still long enough     caused a bit of setback, so Angela again
chemotherapy.                              to receive treatment. Her oncologist       uses a cane when she walks.
    “I’m a positive person, so I went on   told her husband, “Take her to Johns            Angela’s mother also had breast
with life,” says Angela, who saw her on-   Hopkins,” Angela says.                     cancer. She died in 2000 when the can-
cologist for follow up visits to make          Once she arrived at Johns Hopkins,     cer spread to her brain, and Angela was
sure the cancer remained in check.         she was transferred to the Kimmel          sure that was her fate. “I didn’t think I
    Angela thought cancer was in her       Cancer Center. Her discomfort was so       was going to make it,” says Angela. “I
past, so she and her husband bought a      severe, even the slightest touch caused    told my husband to start donating my
fixer upper house. When she began ex-      Angela to scream out in pain, but exerts   clothes. I was sure I wasn’t going to
periencing sharp pain in her leg, she      from the Duffey Family Palliative Care     live, but Johns Hopkins gave me hope.
                                                                                      They tell you about options and ad-
                                                                                      vances. The message is that you can live
                                                                                      with cancer.”
“JOHNS HOPKINS GAVE ME HOPE. THEY TELL YOU                                                 When the first treatment she tried
                                                                                      didn’t work, Angela recalls her nurse
ABOUT OPTIONS AND ADVANCES. THE MESSAGE IS
                                                                                      CONTINUED ON BACK PAGE
THAT YOU CAN LIVE WITH CANCER.”

                                                                                                   2020/2021 • BREAST MATTERS 1
BREASTMATTERS - A BETTER WAY Inside - Johns Hopkins Medicine
“I’m glad these doctors
 recognize what I’ve been
 through. I know they’ll take
 my symptoms seriously and
 be proactive.”

Women’s Wellness

BEFORE,
DURING AND
AFTER
MENOPAUSE
2 BREAST MATTERS • 2020/2021
BREASTMATTERS - A BETTER WAY Inside - Johns Hopkins Medicine
Clara is a busy 46-year-old mother of two. She’s also a breast cancer survivor.
Diagnosed in 2012 with hormone receptor positive breast cancer, she underwent
a bilateral mastectomy and, for the past seven years, has taken tamoxifen. She
says symptoms of the medication, which blocks hormone receptors to prevent
her hormone-triggered cancer from recurring, have been fairly mild and
manageable. But Clara recognizes that, as she gets older, her medical history and
the menopausal transition will put her at greater risk for other health issues, such
as osteoporosis and cardiovascular disease. She’s not too worried about it, for
good reason.

CLARA PLANS TO TAKE ADVANTAGE            says breast cancer expert Vered                  Clara sees the benefits. “I’m glad
of a brand new program at Johns          Stearns, Women’s Malignancies                these doctors recognize what I’ve
Hopkins dedicated to coordinating and    Program Director and the new                  been through. I know they’ll take my
providing women’s health care before,    women’s wellness program co-director.        symptoms seriously and be proactive.”
during, and after menopause. The         “Women with breast cancer, regardless        she says. As a physical therapist, Clara
program was launched with founda-        of age at diagnosis, are very likely to      understands and values the concept of
tional support from Robin and Mark       encounter symptoms of menopause,             a multidisciplinary team of medical
Rubenstein and the Bauer Foundation,     such as hot flashes, vaginal dryness and     professionals. “It’s good to know that
bringing together a hand-picked multi-   bone loss,” says Stearns. While she has      they’re talking to one another behind
disciplinary team of medical experts     referred many of her breast cancer           the scenes,” she says.
from the Kimmel Cancer Center and        patients to Shen over the years, this            Although the public is beginning to
throughout Johns Hopkins. “It’s a pas-   new program provides patients access         become more aware of the need for a
sion,” says the program’s co-director    to more timely appointments and              focus on women’s care in midlife, other
gynecologist Wen Shen of developing      coordinated care with dedicated              programs currently available to this de-
the women’s wellness program to de-      experts.                                     mographic are limited, Shen explains.
liver robust, coordinated care to            Under Shen’s and Stearns’ leader-        “We are broadening the focus, includ-
women.                                   ship, the expanding multispecialty           ing a wide range of specialists and      Johns Hopkins
                                                                                                                                             Medicine
                                         team includes experts in: gynecology         getting to the core of how women
                                         and women’s health; wellness services        can age healthy,” she says.
                                         for breast cancer patients, the care of          “We anticipate that our
                                         survivors and women at risk; cardio-         program can both serve as the
                                         vascular health; treatment of uterine        primary clinic for some women,
                                         and vaginal prolapse, incontinence and       or provide a consult with a
                                         related conditions; mood and anxiety         roadmap that can be carried out
                                         disorders; arthritis and other joint, lig-   by the women’s own physi-
                                         ament and muscle disorders; bone             cians,” Stearns says.
Wen Shen, M.D.     Vered Stearns, M.D.   health and osteoporosis; treating                To learn more about
                                         women with more than one health              our new program for                  Managing Wo
                                                                                                                                         men’s
This may be especially relevant to       issue; and combining conventional and        women’s wellness or to ask           Healthcare Be
                                                                                                                                          fore,
                                                                                                                           During & Beyo
                                                                                                                                           nd
patients who have had breast cancer,     integrative medicine.                        a question, email us at              Menopause

                                                                                      womenswellness@jhmi.edu.

                                                                                                    2020/2021 • BREAST MATTERS 3
BREASTMATTERS - A BETTER WAY Inside - Johns Hopkins Medicine
[Feature]

                                A BETTER WAY
                                Harnessing the Power of Breast Cancer Prevention

                                Her diagnosis came decades before drug and
                                radiation therapies for breast cancer. The cutting
                                edge science at the time was very literally focused
                                on the cutting edge of the scalpel with surgery—
                                in the form of Halsted’s radical mastectomy—that
                                removed the breast, muscles and lymph nodes
                                under the arm. Later on, parts of her brain were
When Leslie Ries’s              removed after the cancer spread there by
grandmother was                 metastasis.
diagnosed with                  Leslie imagines how it must have been for her
breast cancer in the            grandmother, when more and more of her body
                                was carved into and cut away as the disease
early 1940s, there              spread, ultimately claiming her life. Although
was no understanding            her grandmother died before Leslie’s parents
of BRCA mutations               were even married, the source of this cancer was
                                already eerily shaping Leslie’s future and that of
or the grip the disease         her daughters.
would have on future
                                As far as we’ve come in understanding and treating
generations of the              breast cancer, the life-altering experiences of
family.                         women and their families is a jolting reminder of
                                how much farther we have to go and the dire need
                                for prevention.

 4 BREAST MATTERS • 2020/2021
BREASTMATTERS - A BETTER WAY Inside - Johns Hopkins Medicine
“I’ve seen the devastation too many
times,” says Leslie. “Mothers gone,
leaving behind young children. We
have to intervene to protect ourselves,
our children and others from getting
this disease. Breast cancer is a trauma
to the whole family.”
     She understands that trauma all too
well. Her own diagnosis came 15 years
ago.
     Leslie tested positive for a BRCA
mutation, a genetic alteration that can
occur to one or both types of breast
cancer susceptibility genes (BRCA1 and
BRCA2). It alters the body’s ability to
repair DNA, placing those affected at                                                                       From left, Carly Ries, Leslie
                                                                                                            Ries, Emily Ries
higher risk of developing breast cancer.
This inherited alteration, potentially
affecting multiple generations of fami-
lies, is also associated with other can-
cers in men and women, including
                                                 “There has to be a better way than cutting off body parts.”
ovarian, prostate and pancreatic can-                                                                                     – CARLY RIES
cers. The mutation caused her cancer
and now also threatens her two daugh-            seen and been affected by the limita-       for families who have already been
ters.                                            tions of treatment. Even with major ad-     touched by breast cancer as well as for
     Leslie is grateful to be a survivor         vances, too many patients are not cured     others who may not even know that
and for the progress that has been               and die of breast cancer, he says.          they are at high risk.
made since her grandmother’s diagno-                 “After trying to cure patients with         Leslie and Tom’s daughter Emily
sis more than 70 years ago. After en-            breast cancer for 30 years, we need to      calls herself a pre-vivor. She has the
during a double mastectomy and                   implement another approach in our           same BRCA mutation as her mother,
reconstructive surgery, and 4 months             battle,” says Fetting. “For all of the      and that puts her at much greater risk
of chemotherapy, she considers herself           success of treatment, the experience        for breast and ovarian cancer. For
fortunate and grateful. She doesn’t              is punishing and leaves physical and        many women who inherit a BRCA mu-
deny that treatment saves lives, but she         emotional scars. After treatment, sur-      tation, it’s not a matter of “if” they de-
also knows it’s not enough.                      vivors and their family members live        velop breast cancer but “when” they
     “The improvements in treatment              with fear of recurrence, and their lives    develop breast cancer.
options and reconstruction are wonder-           are forever different.”                         She can still recall the pain at 21 of
ful, but they still come at a great cost,” she       Among these tolls is the threat of      learning about her mother’s breast can-
says. “The long-term emotional, physical         breast cancer that looms so heavily over    cer diagnosis. At that time, her mind
and financial tolls are immense and often        so many families, including that of         was focused on the unthinkable possi-
irreparable. We have to do better.”              Leslie and her husband Tom. In honor        bility of losing her mother. “I won-
     Leslie’s own experience and that of         of Dr. Fetting, they gave a lead gift in    dered, what if she’s not there when I get
so many other families made her real-            2011 to start the John Fetting Fund for     married or have kids,” says Emily. She
ize, “We have to think differently.” She         Breast Cancer Prevention to move pre-       wasn’t yet aware of what lay ahead for
wasn’t alone. Her oncologist, breast             vention to the forefront of breast cancer   her or the cruel reach of breast cancer.
cancer expert John Fetting, had the              research. Using the latest technological        When genetic testing showed that
same realization.                                advances, the team of Johns Hopkins         Emily inherited the BRCA mutation,
     In the decades Dr. Fetting has been         experts in breast cancer and genetics is    she’d hoped less invasive ways of
treating breast cancer patients, he has          committed to developing better options      cancer prevention would become

                                                                                                         2020/2021 • BREAST MATTERS 5
BREASTMATTERS - A BETTER WAY Inside - Johns Hopkins Medicine
available before she had to take action.        Leslie and Tom’s daughter Carly          on, yet Emily and Carly consider them-
She didn’t want cancer to be her legacy.    was just 17 years old, a high school         selves lucky. “I got to make my own de-
Now, in her 30s, married and the            senior, when her mother was                  cisions. I didn’t have to wait to have
mother of a young son, the thought of       diagnosed. Like her sister Emily, she        cancer, but what a choice to have to
not being around to see him grow up         has inherited the BRCA mutation.             make,” says Emily. Carly agrees. She
weighed too heavily on her to wait for      For now, at 32, Carly has chosen             says, “There has to be a better way than
those advances. Yet to do the most she      surveillance, close monitoring aimed         cutting off body parts.” That better way
could do to try to prevent breast cancer,   at early detection.                          she hopes will come from the research
the options were strikingly similar to          “I totally understand and support        the Fetting Fund is making possible.
her mother’s options, though without        the decision my sister made, but for             Fetting’s goal, shared by the Ries
the need to have chemotherapy. She          me, at this stage of my life, I want to      family and the patients, families and
made the difficult decision to have a       wait until I have children before I          others who support the Fetting Fund, is
double mastectomy. The night before         move forward with cancer-preventive          to bring an end to these kinds of ago-
her surgery, she recalls looking at her     surgery,” says Carly.                        nizing decisions and the trauma of
perfectly healthy, unscarred breasts                                                     breast cancer by shifting the focus from
                                             ROUGHLY 30% OF BREAST CANCER                cure alone to cure and prevention.
wondering why the best prevention
                                             CASES COULD BE PREVENTED BY
available to her was lopping off body        MODIFYING KNOWN RISK FACTORS
                                                                                             As Leslie and Tom’s daughter Carly
parts.                                                                                   continues to think about the unthink-
    This was just the beginning for              The heartbreak is that she has to       able and whether her only option for
Emily. She had more surgeries over two      think about this at all. The Fetting         breast cancer prevention will be to
years, including a hysterectomy and         Fund’s goal is to change this trajectory     have healthy body parts removed so
oophorectomy to remove her uterus           through research.                            they don’t become cancer later, she vol-
and ovaries to prevent other cancers             “This was a pivotal time in my          unteers for studies, donating blood
caused by the BRCA mutations. She has       life and my sister’s life. Emily was         samples. Like her sister Emily, she
a hormone patch that helps ease the         about to graduate college, and I was         hopes researchers can use them to un-
symptoms of the resulting early onset       graduating from high school,” Carly          ravel the very origins of breast cancer
of menopause. The surgery means             remembers. “I don’t want to live my          and find better ways to prevent breast
Emily and her husband cannot grow           life scared.” Carly’s hope is for progress   cancer in the future. It would be ideal if
their family, but eases some of the         that will mean one day women won’t           these answers came before Carly has to
worry that she won’t be around to see       be confronted with decisions like these.     make a decision about surgery. She un-
her son grow up.                                 It’s a lot for a young woman to take    derstands the timing might not work
                                                                                         out. “I may not see the benefits, but
                                                                                         someone will in the future, and that’s
                                                                                         important,” says Carly.
                                                                                             Lorraine Schapiro understands.
                                                                                         Breast cancer abruptly entered her life
                                                  John Fetting, M.D.                     14 years ago when her daughter Jill
                                                                                         Mull was diagnosed. When she heard
                                                                                         about the Fetting Fund, she and her
                                                                                         husband Mark joined the cause with-
                                                                                         out hesitation. Prevention was already
                                                                                         on Lorraine’s mind. “We hear so much
                                                                                         about cure, and I thought what about
                                                                                         prevention?”
                                                                                             Tears still fill Lorraine’s eyes when
                                                                                         she recalls the day she received the call
                                                                                         from Jill delivering the shocking news
                                                                                         that she had breast cancer. As the real-
                                                                                         ity sank in and Jill underwent a
                                                                                         lumpectomy to remove the cancerous
                                                                                         tumor, Lorraine says, “I remember
                                                                                         thinking, please don’t let it be in her
                                                                                         lymph nodes.” The pathology from the
                                                                                         lumpectomy found unclear margins
                                                                                         between cancer and normal cells,

6 BREAST MATTERS • 2020/2021
BREASTMATTERS - A BETTER WAY Inside - Johns Hopkins Medicine
PROTONS ARE THE MOST NOVEL
DEVELOPMENT IN PATIENT-CENTERED
RADIATION THERAPY, AND CAN BE
TAILORED SO THAT THEY PENETRATE
ONLY A SELECTED DEPTH THROUGH
TISSUE. CONSEQUENTLY, RADIATION
STOPS AT THE TUMOR, PRESERVING
HEALTHY, NON-CANCER TISSUE BENEATH.

                                                                                                     Jill Mull and family,
                                                                                                     from left:Jacob, Jill,
                                                                                                     Mike, Ethan

“We cut, burn and poison, and even that doesn’t always work forever.”                              – JILL MULL

meaning the cancer may have begun to      When she lost her hair during               Lorraine says. She credits Dr. Fetting
spread. Lorraine once again pleaded,      chemotherapy, her son announced to          with getting them both through the di-
“Please don’t let her need a mastec-      his kindergarten class that Jill was        agnosis, treatment and recovery.
tomy,” but the unclear margins of the     bald. Later, when she was having her            Genetic testing revealed that Jill
cancer required a mastectomy. “Please     mastectomy, he told his teacher that        had not inherited a BRCA mutation.
don’t let her need chemotherapy,”         his mommy was having her boobies            There was no answer for why she devel-
 Lorraine thought, but Jill’s cancer      thrown in the trashcan because they         oped breast cancer at such an early age.
required six months of chemotherapy       were very bad.                              Whether there were genetic clues that
and an additional nine months of treat-       Funny yes, but also a sober re-         could have predicted and prevented it
ment with the drug Herceptin and 10       minder of the intrusion of breast can-      is the type of research the Fetting Fund
years of tamoxifen therapy.               cer into too many families.                 supports.
    Herceptin and tamoxifen are               Jill was diagnosed at just 32 years
                                                                                      AN ESTIMATED 232,000 NEW BREAST
major success stories in the treatment    old. For the young mother of 4-year old     CANCER CASES ARE DIAGNOSED IN
of breast cancer. They block the hor-     twin boys, breast cancer was the last       THE UNITED STATES EACH YEAR
mones and other signals that certain      thing she was expecting, but she re-
types of breast cancers need to grow      mained positive, never asking “Why              “We are in the process of identify-
and spread. These drugs work well, but    me?” Lorraine, on the other hand, re-       ing genetic changes in breast tissue
they cause side effects, and they don’t   calls being in denial, certain Jill’s ab-   that convert normal cells to cancer
work in every patient.                    normal mammogram was just a                 cells. I believe we can figure out which
    Jill tried complementary ap-          mistake. Lorraine was in a Pilates class    changes are necessary for breast cancer
proaches, such as acupuncture to ease     and didn’t answer the phone when Jill       to develop and intervene,” says Fetting.
her symptoms. Mostly, she is grateful     first called. When the phone immedi-            When Jill realized breast cancer
for the support of her family, particu-   ately rang again, Lorraine instantly        was going to be a part of her life, she
larly her husband Mike.                   knew. Her heart filled with dread and       turned it into a way to help other pa-
    A little laughter helped as well.     she answered. “It was devastating,”         tients, joining the Breast Cancer Pro-

                                                                                                 2020/2021 • BREAST MATTERS 7
BREASTMATTERS - A BETTER WAY Inside - Johns Hopkins Medicine
tion endeavor focused on a better un-
                                                                                             derstanding of prevention, health and
                                                                                             wellbeing. “Normal,” however is rela-
                                                                                             tive, Erin pointed out. “The weight of
                                                                                             recurrence never goes away no matter
                                                                                             how well you feel.”
                                                                                                 Erin had surgery, chemotherapy, ra-
                                                                                             diation therapy and hormone therapy—
                                                                                             everything doctors have in their
                                                                                             arsenal to fight breast cancer and still,
                                                                                             in 2017 she learned her cancer had re-
                                                                                             turned and spread throughout her
                                                                                             body. There would be no cure for Erin,
                                                                                             who passed away in 2019 at 38, leaving
                                                                                             behind her devoted husband Steve and
                                                                                             their 8-year-old-daughter.
                                                                                                 Erin, a Fetting Fund advocate, left a
                                                                                             powerful message, “Early detection
                                                                                             does not necessarily mean survival or
                                                                                             better outcomes. I was diagnosed at
                                                                                             Stage 2, and it still advanced to the worst
                                                                                             stage,” she said. “We can make a differ-
                                                                                             ence in the world. We need prevention.
                                                                                             We need the Fetting Fund so people
                                                                                             don’t go through what I went through. I
                                                                                             don’t want that for my daughter.”
                                                                                                 Her call is championed by Fetting,
                                              Jill Mull with her mother, Lorraine Schapiro
                                                                                             Leslie and Tom, Emily, Carly, Jill and
                                                                                             Mike, Lorraine and Mark, and echoed by
                                                                                             women and families around the world.
GENETIC TESTING REVEALED THAT JILL HAD NOT INHERITED A BRCA                                      As the Fetting Fund pioneers a new
MUTATION. THERE WAS NO ANSWER FOR WHY SHE DEVELOPED BREAST
                                                                                             way of thinking about breast cancer
CANCER AT SUCH AN EARLY AGE. WHETHER THERE WERE GENETIC CLUES
THAT COULD HAVE PREDICTED AND PREVENTED IT IS THE TYPE OF                                    care, it is an uphill battle, as the lion’s
RESEARCH THE FETTING FUND SUPPORTS .                                                         share of research dollars go to study
                                                                                             new therapies. Stories like these are
gram at the Johns Hopkins Kimmel                   Erin Yale is among the women who          inspiring change, however, and the
Cancer Center as a patient navigator           remind us of the limitations of treat-        early success of Fetting Fund research
for newly diagnosed patients with              ment, even when it is diagnosed early.        shows what is possible through
breast cancer. Her focus is on patients        Erin was supposed to be one of the lucky      prevention.
under age 50.                                  ones. Her breast cancer was detected in
                                                                                               ROUGHLY 40,000 WOMEN DIE IN
     Sharing her story brings them hope.       what is considered a curable stage.             THE UNITED STATES FROM
They see a survivor in her. She sees a big-        In 2012, at age 30, she nursed her          BREAST CANCER EACH YEAR
ger need in them. She has seen too many        newborn baby for the last time before
young women lose their lives to breast         she went to the operating room for a              “We know it will not be easy, but
cancer, and she yearns for the day when        mastectomy. After learning she inher-         this cannot continue,” says Fetting.
she doesn’t have to sit with women as          ited a BRCA mutation, she had surgery         “We need the same kind of concerted
they write letters for their children to       to remove her fallopian tubes and             effort for prevention that has been
open on special occasions in their lives—      ovaries in 2014 to ward off cancer.           mounted to treat breast cancer.”
birthdays, graduations, weddings,                  Erin recalled in a video made of her          The Fetting Fund is investigating the
births—because their mothers may not be        talk at a 2018 Fetting Fund event that,       scientific benefits of natural remedies
there. For Jill, Fetting Fund research is      as the years passed, she tried to return      such as the spice curcumin, broccoli
the key to changing this reality.              to her normal life as a young wife and        sprouts tea and a magnolia tree extract
     “We cut, burn and poison, and even        mother, working in the corporate world        that may contain properties that detoxify
that doesn't always work forever,” says        and launching Pushing Pink Elephants,         carcinogens or reset the molecular errors
Jill.                                          a breast cancer awareness and educa-          that initiate breast cancer. Technological

8 BREAST MATTERS • 2020/2021
“We need prevention.
                                                                                            We need the Fetting Fund
                                                                                            so people don’t go
                                                                                            through what I went
                                                                                            through. I don’t want that
    Erin Yale with her family
                                                                                            for my daughter.”
                                                                                           – ERIN YALE, 1981-2019

advances mean we no longer have to
wait until a cancer is visible through
imaging or a lump can be felt to detect
it. New molecular tests that make the       THE PATH TOWARD A BETTER WAY
invisible visible can detect early
                                            MISSION OF THE JOHN FETTING FUND
changes that precede breast cancer.
This includes understanding the con-        FOR BREAST CANCER PREVENTION
nection between genetic and epigenetic      The mission of the Fetting Fund is to identify the one woman in eight who is at
(reversible chemical changes to DNA)        high risk for developing breast cancer in her lifetime and to develop safe, effective
that contribute to breast and other can-    natural products and drugs to prevent that breast cancer. Of equal importance, the
cers Then, injecting anticancer drugs or    research supported by the Fetting Fund seeks to identify the seven in eight women
a drug like tamoxifen directly into the     who will not develop breast cancer. Medical caregivers will be able to provide more
breast ducts could eliminate these          prevention efforts for those at risk and reassure those who are not.
changes before a cancer has a chance to
                                            Traditional funding sources are focused on advances in treatment and the quest
grow. Vaccines that train the immune
                                            for a cure for breast cancer. As a result, funding for prevention research has
system to patrol and destroy breast can-    lagged. The Fetting Fund relies on private philanthropy to support pilot preven-
cer cells are another promising area of     tion studies that will produce results and allow Johns Hopkins prevention scien-
study. Lifestyle research, such as the      tists to design more substantial research plans and compete successfully for
role of alcohol in promoting breast can-    larger grants. Our vision is to support enough high quality pilot studies that our
cer development, could yield simple         breast cancer scientists will be able to attract funding for a rich portfolio of large
changes that can ward off breast cancer.    breast cancer prevention studies. The Fetting Fund is a catalyst for development
     “This is just the beginning,” says     of a critical mass of breast cancer prevention science and breast cancer preven-
Leslie. “There is so much promise. I        tion scientists resulting in a world class breast cancer prevention program at the
can see it, and I feel that it’s going to   Johns Hopkins Kimmel Cancer Center.
happen.” l

                                                                                                       2020/2021 • BREAST MATTERS 9
WHAT’S NEW
Study Helps Breast Cancer Survivors Reach Their                   A Patient App
Weight-Loss Goals                                                                           Hormone-blocking drugs are a pow-
                           Attaining a healthy weight is                                    erful weapon against breast cancer.
                           even more important for breast                                   At the same time, these drugs can
                           cancer survivors, says new Kimmel                                have significant side effects—some
                           Cancer Center breast cancer expert                               so uncomfortable that they drive pa-
                           Jennifer Sheng, M.D. Studies show                                tients to quit taking them before
                           that losing just 5% body weight can                              completing the typical
                           help survivors combat fatigue, im-                               five-year course, often
                           prove their body image, and simply     without notifying their doctors until the next
feel better after the trying rigors of breast cancer treatment.   scheduled appointment weeks or months away.
In addition, research suggests that weight loss can lower the     Breast cancer expert Karen Smith, M.D., says a
risk of breast cancer recurrence. A new study open to over-       new app called Thrive delivers education,
weight breast cancer survivors treated at Johns Hopkins who       helps patients track their appointments, and
have completed treatment and want to lose weight will offer       communicate with their care providers about
behavioral intervention that’s been tested before. After two      their treatment plans. Now, a new electronic
months, if logging calories, tracking and increasing physical     patient reported outcomes module called
activity, and working a coach doesn’t work, the FDA-ap-           ePro helps patients to report what medicines
proved weight loss drug naltrexone/bupropion (Contrave)           they were prescribed and symptoms they are
will be prescribed for the next four months.                      having. It also notifies the care team if the
Read more: http://bit.ly/2n6qG80                                  symptoms pass a severity threshold or if
                                                                                                                   { Tracie}
                                                                  they’ve unexpectedly discontinued taking their       medications.
                                                                  Read more: http://bit.ly/2pnHaJr

                                                                  A New Leader of the Gene Team
                                                                                            Jessica Tao, M.D., is the new direc-
                                                                                            tor of the GAITWAY program, short
                                                                                            for Genetic Alternations In Targets
                                                                                            With Actionable Yields. This special-
                                                                                            ized tumor board is filled with ex-
                                                                                            perts in cancer medicine, genetics,
                                                                                            and biology, including clinical oncol-
                                                                                            ogists, laboratory scientists, and
                                                                  molecular pathologists, who keep tabs on the latest research
                                                                  and targeted drugs to help match the right medicines to
A Model for Breast Cancer Care and Wellness                       cancer patient’s specific genetic alterations. She received a
Mary Wilkinson, M.D., new clinical director for the Johns         grant from the Maryland Cigarette Restitution Fund to better
Hopkins Kimmel Cancer Center Under            }
                                        { MiaArmour Breast        understand how tumor cell-free DNA—tiny bits of genetic ma-
Health Innovation Center, is overseeing a new model of            terial shed from malignant lesions that can be
breast cancer care in which illness and wellness exist in the     extracted from a blood sample—might better benefit patients
same space. Read more: http://bit.ly/2pqeWxL                      and guide treatment. Read more: http://bit.ly/2mXg4rM

10 BREAST MATTERS • 2020/2021
WORLD-CLASS CARE IN A
                                                                    COMMUNITY SETTING
                                          The Possibility for
                                          Better Results With
                                          Fewer Treatments
                                          As our knowledge of
                                          breast cancer has
                                          grown, so have the
                                          number of therapy
                                          modalities and proto-
                                          cols used to treat this
                                          disease, from combi-
nations of chemotherapy to targeted treatments that attack          The Breast Center at Green Spring Station moved to a
malignant cells carrying specific genetic variations. Antonio
                                                                    brand new space in its existing suburban location.
Wolff, M.D., and colleagues are investigating ways that
patients can get more from less by using more targeted treat-       When patients come to the Kimmel Cancer Center at
ments, changing the way that treatments are administered,           Greenspring Station Pavilion III, they are greeted by more
or even carefully stratifying patients to determine who might       than gleaming new private exam rooms; modern infusion
be able to avoid certain treatments altogether.                     bays; and on-site imaging, pharmacy and lab services. The
Read more: http://bit.ly/2n0te7s
                                                                    entire practice is designed to provide an optimal cancer
                              Cancer Treatment                      care patient experience which now also includes surgical
                              Without Hair Loss                     oncology onsite. Read more: http://bit.ly/2oAPHsb
                              Starting this fall, Kimmel
                              Cancer Center patients                 “I’m excited to be part of a
                              with breast cancer or other             practice that’s offering more
                                                                      services in a setting where
                              gynecologic cancers will
                                                                      many patients want to be.
                              have the option to use a                It’s a beautiful site. The
                              new, FDA-approved device                building is new, and the
                              called a “cooling cap” that             services are world-class.”
                                                                     –R I M A C O U Z I , M . D .
prevents or minimizes chemotherapy-induced hair loss.
Read more: http://bit.ly/2Mo3iLE
                                                                      Beginning this fall,
                                                                      patients will be able to
                                                                      undergo surgical
                                                                      procedures at the Green
                                                                      Spring Station pavilion.
                                                                      Surgical oncologist, Lisa
                                                                      Jacobs, M.D., calls the
                                                                      change a “huge
                                                                      advantage” for this
                                                                      patient population.

                                                                                                      2020/2021 • BREAST MATTERS 11
EVENT
                                                                                      Prior Events Recap
                                                                                      Survivor Soul Stroll
                                                                                      On Saturday, May 11, 2019, Team
                                                                                      Hopkins participated in the 3rd Annual

ROUNDUP                                                                               Survival Soul Stroll: A Breast Cancer
                                                                                      Awareness Walk at Canton Waterfront
                                                                                      Park. Our team included employees,
                                                                                      volunteers, cancer survivors, and
                                                                                      community members.
Upcoming
All events are FREE and open to all       Breast Cancer Survivors Program             Survivorship Day
breast cancer survivors, thrivers and     4th Thursday of the month
caregivers unless otherwise noted.        6-8 p.m., Johns Hopkins Bayview,
                                          Medical Education Center
Support Groups                            Contact: cklein3@jhmi.edu,
Early Stage Young Women’s                 (410) 550-6690
Support Group
1st Monday of the month                   Integrative Medicine Lunch Workshop
6-7:30 p.m.,                              A monthly workshop on integrative
Green Spring Station Pavilion III         medicine modalities. Topics vary, but       On May 5, 2019, our Breast Cancer
Contact: jmull1@jhmi.edu,                 previous ones include yoga, medita-         Program hosted its 5th Annual Breast
(410) 583-2972                            tion, nutrition, acupuncture, hypnosis      Cancer Survivorship Day at the BWI
                                          and traditional Chinese medicine.           Marriott Hotel. More than 100
Metastatic Support Group                  Dates vary.                                 participants attended, learning about
3rd Monday of the month                   Contact: ebantug1@jhmi.edu, (410)           integrative medicine, medical
6-7:30 p.m.,                              502-3472                                    marijuana, metastatic breast cancer,
Green Spring Station Pavilion III                                                     clinical updates, immunotherapy,
Contact: jmull1@jhmi.edu,                 Webinars                                    “chemo brain” and exercise. Keynote
(410) 583-2972                            Exercise and Breast Cancer                  speaker, Susan Love, M.D., M.B.A.,
                                          Dec. 4, 2019, 12-1pm                        discussed breast cancer prevention and
                                                                                      emerging new treatments.
                                          Methods to Enhance Breast Cancer
                                          Survivorship                                Swim for Engie Against Cancer
                                          Jan. 9, 2020, 12-1pm                        The 4th annual swimathon was held
                                          Updates in Breast Cancer Research                                       Aug. 24,
                                          and Clinical Care                                                       2019,
                                          Feb. 26, 2020, 12-1 pm                                                  honoring
                                          Registration is required                                                metatatic
                                          https://public.onc.jhmi.edu/                                            breast
Walk and Talk                             survivorshipwebinars/                       cancer survivor Engie Mokhtar. This
Open to all breast cancer survivors       Contact: ebantug1@jhmi.edu, (410)           year’s event supported research by
and thrivers                              502-3472                                    Otis Brawley, M.D., to close racial,
3rd Friday of of the month                                                            economic, and social disparities in
9-10 a.m., Meadowood Regional Park or     Retreat                                     cancer prevention, detection and
Towson Towne Center (weather dependent)   A Journey of Courage and                    treatment.
Registration is required                  Hope for Women with
Contact: jmull1@jhmi.edu,                 Metastatic Breast Cancer                    Promising New Treatments
(410) 583-2972                            April 12-14, 2019                           Brian Christmas, Ph.D., who works in
                                          A weekend retreat for metastatic breast     the laboratory of breast cancer expert
                                          cancer patients and women who support       Evanthia Roussos Torres, M.D., Ph.D.,
                                          them to gather information and support      presented advances in immunother-
                                          on confronting metastatic breast cancer.    apy for breast cancer at the Judith A.
                                          Discussions include routines of treat-      Lese Breast Cancer Foundation annual
                                          ment, daily life challenges, reflections,   dinner. The foundation has supported
                                          and networking with others in a healing     breast cancer research at the Kimmel
                                          and renewing environment.                   Cancer Center since 2004.
                                          Contract: kviands1@jhmi.edu,
                                          (443) 287-2964
NOTEWORTHY                                                                                                    Targeting
                                                     Sukumar lab investigator Bradley                         BRCA1 and 2:
                                                     Downs assembles the cartridges.                          A research team
                                                                                                              led by Victor
                                                                                                              Velculescu, M.D.,
                                                                                                              Ph.D., was among
                                                                                                              seven awarded
                                                                                                              grants from the
                                                                                                              Gray Foundation
                                                                                                              for new ap-
                                                                                                              proaches to the
                                                                                                              early detection,
                                                                                                              diagnosis, and
                                                                                                              therapy of cancers
                                                                                                              related to BRCA1
                                                                                                              and BRCA2
New Laboratory Test Could Make Global Impact: The journal Clinical                                            gene mutations.
Cancer Research reported on a new laboratory test developed by Saraswati                                      Velculescu will
Sukumar, Ph.D., that identifies chemical changes to a group of cancer-related                                 collaborate with
genes and can accurately detect which breast tumors are cancerous or benign, and                              Vered Stearns,
do it in far less time than gold-standard tests on biopsied breast tissue. The test has                       M.D., and Kala
the potential to dramatically reduce the time needed to make a definitive breast                              Visvanathan,
cancer diagnosis in poorer countries. Breast cancer incidence is rising around the                            M.B.B.S., on
world, and the test—an easy-to-use cartridge—could be especially useful in places         research aimed at early detection of
with fewer resources and where mortality rates from breast cancer are much                breast and ovarian cancers.
higher compared to the developed world. The research was supported, in part, by
the Breast Cancer Research Foundation.                                                    Navigating Breast Cancer:
                                                                                          Kimmel Cancer Center Advisory Board

HONORS AND AWARDS                                                                         Member Debra Huber made a gift to
                                                                                          support a social worker/breast cancer
                                                                                          patient navigator. Huber was inspired
                                                                                          by her sister, a breast cancer survivor,
               Dipali Sharma, Ph.D.                                                       to do what she could to ease the trauma
                                                                    Katy Gaffney, R.N.
               Society of American Asian                                                  of cancer diagnosis and treatment.
                                                                    Friends of Oncology
               Scientists In Cancer Research
                                                                    Nursing Clinical
               Outstanding Achievement Award
                                                                    Excellence Award

               Roisin Connolly, M.B.B.Ch.
                                                                    Daniele Gilkes,
               Eastern Cooperative Oncology
                                                                    Ph.D.
               Group-American College of
                                                                    The Best of the
               Radiology Imaging Young
                                                                    American
               Investigator Award
                                                                    Association for
                                                                    Cancer Research
               Stephanie Gaillard, M.D.,
                                                   Journals Collection: Author
               Ph.D.
                                                   ProfilesMost-cited Article. Read it
               Gynecologic Oncology Group
                                                   here: http://bit.ly/2ml3ySx
               Foundation Scholar Investigator
               Award

                                                                                                    2020/2021 • BREAST MATTERS 13
Living with Metastatic Breast Cancer (continued from page 1)
practitioner Katie Papathakis,               Stearns. “As our program grew, we              oncologist or a nurse practitioner as a
C.R.N.P. telling her, “Don’t worry. We       recognized the need for new approaches         ‘quarterback’ who will coordinate the
have something else we want to try.”         to specifically support individuals living     care plan, navigator, nutritionist, social
    Now, Angela takes a pill called pal-     with advanced breast cancer and began          worker, palliative care provider to
bociclib (Ibrance), a targeted therapy       working to raise funds for this new clinic."   manage pain and other symptoms, and
for patients who have a type of breast           Stearns says the needs of individu-        an exercise and rehabilitative medicine
cancer classified as hormone receptor        als living with advanced breast cancer         expert. Optional services will include a
positive but HER2 negative. She also         are different from those with early            spiritual provider, financial counselor,
comes to the Kimmel Cancer Center            stages of the disease and change and in-       integrative medicine, sexual health ed-
every four weeks for an injection of         tensify over time. The specialty clinic        ucator and child life specialist.
fulvestrant (Faslodex) to slow the           for those with advanced breast cancer              Angela feels fortunate that she got
growth of her breast cancer.                 will be set up to provide the most ad-         to the Kimmel Cancer Center, and al-
    The treatment is working. Angela’s       vanced cancer treatment while sup-             though she knows it may sound odd,
cancer is under control and she is pain      porting patients’ unique needs. Stearns        she says breast cancer has had a posi-
free. “All I take now for pain is a little   says this includes emotional and spiri-        tive impact on her life. “It has made me
Tylenol,” she says.                          tual support while living with an un-          a better person,” she says. “People see
    “We want all women to be aware of        known prognosis, guidance concerning           me and can’t believe I have breast can-
new treatments, clinical trials and sup-     complex treatment decisions, manage-           cer. I feel like I am spreading joy and
portive care options available to them,”     ment of disease symptoms and medica-           hope to others.”
says Vered Stearns, a breast cancer          tion side-effects, support for all family          The experience also inspired
expert and Director of the Women’s           members, including specialized, age            Angela to turn a hobby into a business.
Malignancies Program at the Kimmel           appropriate programming for children,          A good eye and knack for interior de-
Cancer Center. “With the right care,         and advanced care planning.                    sign led to a career, working with real
women can live with advanced breast               Patients will benefit from a core         estate agents to stage homes, boosting
cancer for years and decades.”               group of providers, including a medical        their appeal to prospective buyers.
    This is the inspiration for a new
multispecialty clinic for patients living
with advanced breast cancer planned          “WITH THE RIGHT CARE, WOMEN CAN LIVE WITH
by Stearns and colleagues.
    “About 30% of the breast cancer          ADVANCED BREAST CANCER FOR YEARS AND
 patients seen regularly in our clinic
have advanced breast cancer,” says           DECADES.” - VERED STEARNS

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    Our physician-scientists are lead-
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breakthroughs in cancer, and your do-        office:
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innovative research that is translated       Fax: 410-230-4262
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