breast matters - johns hopkins hospital...2020/2021• breast matters1 so, in 2013 when the then-...

[Inside]A BETTER WAY

2020/2021

T H E J O H N S H O P K I N S K I M M E L C A N C E R C E N T E R

BREAST MATTERS

Harnessing the Power of Breast Cancer Prevention

WOMEN’S WELLNESSANGELA’S STORYAND MUCH MORE

T H E J O H N S H O P K I N S K I M M E L C A N C E R C E N T E R

BREAST MATTERS2020/2021

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On the Cover: Leslie Ries and her daughters, Carly and Emily

UPCOMING EVENTS Retreat: A Journey of Courage andHope for Women with MetastaticBreast CancerApril 12-14, 2020

Support Groups, webinars and moreon page 12

page 4A BETTER WAY

page 2Women’sWellness

2020/2021 • BREAST MATTERS 1

SO, IN 2013 when the then- 54-year-oldreceived several telephone calls abouther mammogram, she assumed it wasthe same scenario. At the time, her pri-ority was caring for two siblings whohad both suffered strokes.

“They were so persistent, so Ithought I better call them back,” saysAngela, but she decided to wait untilher brother and sister were better.

When she finally scheduled time tosee her doctor, the news was shocking.“He told me I had breast cancer,” saysAngela. Her husband went with her tothe appointment, and she recalls thathe began to cry when the doctor deliv-ered the news. Angela remained stead-fast, however. “I was ready to dowhatever I had to,” she says.

Her cancer was diagnosed early,and her doctor referred her to a com-munity hospital, where she had a mas-tectomy, radiation therapy andchemotherapy.

“I’m a positive person, so I went onwith life,” says Angela, who saw her on-cologist for follow up visits to makesure the cancer remained in check.

Angela thought cancer was in herpast, so she and her husband bought afixer upper house. When she began ex-periencing sharp pain in her leg, she

and Pain Program began treatmentsthat got it under control so she couldbegin radiation therapy.

Surgeon Dan Sciubba then removedcancerous tumors that spread to verte-

brae in Angela’sback. When asmall dot that ap-peared on followup scans began togrow, Sciubba op-erated again.

“I’m so glad Icame to the Kimmel Cancer

Center,” says Angelawho says she and her husband aregrateful to the community physicianwho advised us to come here. What adifference they have made. I went froma wheel chair, to a walker, to a cane, tonothing,” she says. A car accidentcaused a bit of setback, so Angela againuses a cane when she walks.

Angela’s mother also had breastcancer. She died in 2000 when the can-cer spread to her brain, and Angela wassure that was her fate. “I didn’t think Iwas going to make it,” says Angela. “Itold my husband to start donating myclothes. I was sure I wasn’t going tolive, but Johns Hopkins gave me hope.They tell you about options and ad-vances. The message is that you can livewith cancer.”

When the first treatment she trieddidn’t work, Angela recalls her nurse

chalked it up to the strenuous remodel-ing process. She went to see a doctor,who said it was bursitis and begantreatment.

She didn’t give cancer a thought andneither did the doctor. Given the workshe was doing in her home, bursitisseemed to make sense. However, whenthe pain became so severe and unre-lenting that it kept her up at night andmade it almost impossible to walk, herhusband took her to the emergency de-partment of the hospital where she wasfirst treated for cancer. Angela wasshocked when she received the newsthat the pain was not bursitis or an-other strain or injury. Instead, herbreast cancer had returned, and worseyet, the source of her pain was fromcancer that had spread to her bones.

Radiation therapy was recom-mended, but the pain was so severe,Angela could not lay still long enoughto receive treatment. Her oncologisttold her husband, “Take her to JohnsHopkins,” Angela says.

Once she arrived at Johns Hopkins,she was transferred to the KimmelCancer Center. Her discomfort was sosevere, even the slightest touch causedAngela to scream out in pain, but exertsfrom the Duffey Family Palliative Care

Living with Metastatic Breast Cancer

Angela always made sure she went for her annual mammogram. Often times, the results showed spots that were suspicious for cancer, but she said it always turned out to be a false alarm.

Katie Papathakis, C.R.N.P.

CONTINUED ON BACK PAGE

Angela’s story

“JOHNS HOPKINS GAVE ME HOPE. THEY TELL YOUABOUT OPTIONS AND ADVANCES. THE MESSAGE ISTHAT YOU CAN LIVE WITH CANCER.”

2 BREAST MATTERS • 2020/2021

BEFORE,DURING ANDAFTERMENOPAUSE

“I’m glad these doctors recognize what I’ve beenthrough. I know they’ll takemy symptoms seriously andbe proactive.”

Women’s Wellness


CLARA PLANS TO TAKE ADVANTAGEof a brand new program at Johns Hopkins dedicated to coordinating andproviding women’s health care before,during, and after menopause. The program was launched with founda-tional support from Robin and MarkRubenstein and the Bauer Foundation,bringing together a hand-picked multi-disciplinary team of medical expertsfrom the Kimmel Cancer Center andthroughout Johns Hopkins. “It’s a pas-sion,” says the program’s co-directorgynecologist Wen Shen of developingthe women’s wellness program to de-liver robust, coordinated care towomen.

This may be especially relevant topatients who have had breast cancer,

Clara sees the benefits. “I’m gladthese doctors recognize what I’vebeen through. I know they’ll take mysymptoms seriously and be proactive.”she says. As a physical therapist, Claraunderstands and values the concept ofa multidisciplinary team of medicalprofessionals. “It’s good to know thatthey’re talking to one another behindthe scenes,” she says.

Although the public is beginning tobecome more aware of the need for afocus on women’s care in midlife, otherprograms currently available to this de-mographic are limited, Shen explains.“We are broadening the focus, includ-ing a wide range of specialists andgetting to the core of how womencan age healthy,” she says.

“We anticipate that our program can both serve as theprimary clinic for some women,or provide a consult with aroadmap that can be carried outby the women’s own physi-cians,” Stearns says.

To learn more about our new program for women’s wellness or to ask a question, email us [email protected].

says breast cancer expert VeredStearns, Women’s MalignanciesProgram Director and the newwomen’s wellness program co-director.“Women with breast cancer, regardlessof age at diagnosis, are very likely toencounter symptoms of menopause,such as hot flashes, vaginal dryness andbone loss,” says Stearns. While she hasreferred many of her breast cancerpatients to Shen over the years, thisnew program provides patients accessto more timely appointments andcoordinated care with dedicatedexperts.

Under Shen’s and Stearns’ leader-ship, the expanding multispecialtyteam includes experts in: gynecologyand women’s health; wellness servicesfor breast cancer patients, the care ofsurvivors and women at risk; cardio-vascular health; treatment of uterineand vaginal prolapse, incontinence andrelated conditions; mood and anxietydisorders; arthritis and other joint, lig-ament and muscle disorders; bonehealth and osteoporosis; treatingwomen with more than one healthissue; and combining conventional andintegrative medicine.

Managing Women’s Healthcare Before, During & Beyond Menopause

Johns Hopkins Medicine

Wen Shen, M.D. Vered Stearns, M.D.

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.


A BETTER WAY

[Feature]

Her diagnosis came decades before drug andradiation therapies for breast cancer. The cuttingedge science at the time was very literally focusedon the cutting edge of the scalpel with surgery—in the form of Halsted’s radical mastectomy—thatremoved the breast, muscles and lymph nodesunder the arm. Later on, parts of her brain wereremoved after the cancer spread there bymetastasis.

Leslie imagines how it must have been for hergrandmother, when more and more of her body was carved into and cut away as the diseasespread, ultimately claiming her life. Althoughher grandmother died before Leslie’s parents were even married, the source of this cancer wasalready eerily shaping Leslie’s future and that ofher daughters.

As far as we’ve come in understanding and treatingbreast cancer, the life-altering experiences ofwomen and their families is a jolting reminder ofhow much farther we have to go and the dire needfor prevention.

When Leslie Ries’sgrandmother wasdiagnosed with breast cancer in theearly 1940s, therewas no understandingof BRCA mutationsor the grip the diseasewould have on futuregenerations of thefamily.

Harnessing the Power of Breast Cancer Prevention


“I’ve seen the devastation too manytimes,” says Leslie. “Mothers gone,leaving behind young children. Wehave to intervene to protect ourselves,our children and others from gettingthis disease. Breast cancer is a traumato the whole family.”

She understands that trauma all toowell. Her own diagnosis came 15 yearsago.

Leslie tested positive for a BRCAmutation, a genetic alteration that canoccur to one or both types of breastcancer susceptibility genes (BRCA1 andBRCA2). It alters the body’s ability torepair DNA, placing those affected athigher risk of developing breast cancer.This inherited alteration, potentiallyaffecting multiple generations of fami-lies, is also associated with other can-cers in men and women, includingovarian, prostate and pancreatic can-cers. The mutation caused her cancerand now also threatens her two daugh-ters.

Leslie is grateful to be a survivorand for the progress that has beenmade since her grandmother’s diagno-sis more than 70 years ago. After en-during a double mastectomy andreconstructive surgery, and 4 monthsof chemotherapy, she considers herselffortunate and grateful. She doesn’tdeny that treatment saves lives, but shealso knows it’s not enough.

“The improvements in treatment options and reconstruction are wonder-ful, but they still come at a great cost,” shesays. “The long-term emotional, physicaland financial tolls are immense and oftenirreparable. We have to do better.”

Leslie’s own experience and that ofso many other families made her real-ize, “We have to think differently.” Shewasn’t alone. Her oncologist, breastcancer expert John Fetting, had thesame realization.

In the decades Dr. Fetting has beentreating breast cancer patients, he has

seen and been affected by the limita-tions of treatment. Even with major ad-vances, too many patients are not curedand die of breast cancer, he says.

“After trying to cure patients withbreast cancer for 30 years, we need toimplement another approach in ourbattle,” says Fetting. “For all of the success of treatment, the experience is punishing and leaves physical andemotional scars. After treatment, sur-vivors and their family members livewith fear of recurrence, and their livesare forever different.”

Among these tolls is the threat ofbreast cancer that looms so heavily overso many families, including that ofLeslie and her husband Tom. In honorof Dr. Fetting, they gave a lead gift in2011 to start the John Fetting Fund forBreast Cancer Prevention to move pre-vention to the forefront of breast cancerresearch. Using the latest technologicaladvances, the team of Johns Hopkinsexperts in breast cancer and genetics iscommitted to developing better options

for families who have already beentouched by breast cancer as well as forothers who may not even know thatthey are at high risk.

Leslie and Tom’s daughter Emilycalls herself a pre-vivor. She has thesame BRCA mutation as her mother,and that puts her at much greater riskfor breast and ovarian cancer. Formany women who inherit a BRCA mu-tation, it’s not a matter of “if” they de-velop breast cancer but “when” theydevelop breast cancer.

She can still recall the pain at 21 oflearning about her mother’s breast can-cer diagnosis. At that time, her mindwas focused on the unthinkable possi-bility of losing her mother. “I won-dered, what if she’s not there when I getmarried or have kids,” says Emily. Shewasn’t yet aware of what lay ahead forher or the cruel reach of breast cancer.

When genetic testing showed thatEmily inherited the BRCA mutation,she’d hoped less invasive ways ofcancer prevention would become

“There has to be a better way than cutting off body parts.”– CARLY RIES

From left, Carly Ries, LeslieRies, Emily Ries


available before she had to take action.She didn’t want cancer to be her legacy.Now, in her 30s, married and themother of a young son, the thought ofnot being around to see him grow upweighed too heavily on her to wait forthose advances. Yet to do the most shecould do to try to prevent breast cancer,the options were strikingly similar toher mother’s options, though withoutthe need to have chemotherapy. Shemade the difficult decision to have adouble mastectomy. The night beforeher surgery, she recalls looking at herperfectly healthy, unscarred breastswondering why the best preventionavailable to her was lopping off bodyparts.

This was just the beginning forEmily. She had more surgeries over twoyears, including a hysterectomy andoophorectomy to remove her uterusand ovaries to prevent other cancerscaused by the BRCA mutations. She hasa hormone patch that helps ease thesymptoms of the resulting early onsetof menopause. The surgery meansEmily and her husband cannot growtheir family, but eases some of theworry that she won’t be around to seeher son grow up.

Leslie and Tom’s daughter Carlywas just 17 years old, a high schoolsenior, when her mother wasdiagnosed. Like her sister Emily, shehas inherited the BRCA mutation. For now, at 32, Carly has chosensurveillance, close monitoring aimed at early detection.

“I totally understand and supportthe decision my sister made, but forme, at this stage of my life, I want towait until I have children before I move forward with cancer-preventivesurgery,” says Carly.

The heartbreak is that she has tothink about this at all. The FettingFund’s goal is to change this trajectorythrough research.

“This was a pivotal time in mylife and my sister’s life. Emily wasabout to graduate college, and I wasgraduating from high school,” Carlyremembers. “I don’t want to live my life scared.” Carly’s hope is for progressthat will mean one day women won’t be confronted with decisions like these.

It’s a lot for a young woman to take

on, yet Emily and Carly consider them-selves lucky. “I got to make my own de-cisions. I didn’t have to wait to havecancer, but what a choice to have tomake,” says Emily. Carly agrees. Shesays, “There has to be a better way thancutting off body parts.” That better wayshe hopes will come from the researchthe Fetting Fund is making possible.

Fetting’s goal, shared by the Riesfamily and the patients, families andothers who support the Fetting Fund, isto bring an end to these kinds of ago-nizing decisions and the trauma ofbreast cancer by shifting the focus fromcure alone to cure and prevention.

As Leslie and Tom’s daughter Carlycontinues to think about the unthink-able and whether her only option forbreast cancer prevention will be tohave healthy body parts removed sothey don’t become cancer later, she vol-unteers for studies, donating bloodsamples. Like her sister Emily, shehopes researchers can use them to un-ravel the very origins of breast cancerand find better ways to prevent breastcancer in the future. It would be ideal ifthese answers came before Carly has tomake a decision about surgery. She un-derstands the timing might not workout. “I may not see the benefits, butsomeone will in the future, and that’simportant,” says Carly.

Lorraine Schapiro understands.Breast cancer abruptly entered her life14 years ago when her daughter JillMull was diagnosed. When she heardabout the Fetting Fund, she and herhusband Mark joined the cause with-out hesitation. Prevention was alreadyon Lorraine’s mind. “We hear so muchabout cure, and I thought what aboutprevention?”

Tears still fill Lorraine’s eyes whenshe recalls the day she received the callfrom Jill delivering the shocking newsthat she had breast cancer. As the real-ity sank in and Jill underwent alumpectomy to remove the canceroustumor, Lorraine says, “I rememberthinking, please don’t let it be in herlymph nodes.” The pathology from thelumpectomy found unclear margins between cancer and normal cells,

John Fetting, M.D.

ROUGHLY 30% OF BREAST CANCERCASES COULD BE PREVENTED BY MODIFYING KNOWN RISK FACTORS


PROTONS ARE THE MOST NOVEL DEVELOPMENT IN PATIENT-CENTEREDRADIATION THERAPY, AND CAN BE TAILORED SO THAT THEY PENETRATEONLY A SELECTED DEPTH THROUGH TISSUE. CONSEQUENTLY, RADIATIONSTOPS AT THE TUMOR, PRESERVINGHEALTHY, NON-CANCER TISSUE BENEATH.

meaning the cancer may have begun tospread. Lorraine once again pleaded,“Please don’t let her need a mastec-tomy,” but the unclear margins of thecancer required a mastectomy. “Pleasedon’t let her need chemotherapy,”Lorraine thought, but Jill’s cancer required six months of chemotherapyand an additional nine months of treat-ment with the drug Herceptin and 10years of tamoxifen therapy.

Herceptin and tamoxifen are major success stories in the treatmentof breast cancer. They block the hor-mones and other signals that certaintypes of breast cancers need to growand spread. These drugs work well, butthey cause side effects, and they don’twork in every patient.

Jill tried complementary ap-proaches, such as acupuncture to easeher symptoms. Mostly, she is gratefulfor the support of her family, particu-larly her husband Mike.

A little laughter helped as well.

When she lost her hair duringchemotherapy, her son announced tohis kindergarten class that Jill wasbald. Later, when she was having hermastectomy, he told his teacher thathis mommy was having her boobiesthrown in the trashcan because theywere very bad.

Funny yes, but also a sober re-minder of the intrusion of breast can-cer into too many families.

Jill was diagnosed at just 32 yearsold. For the young mother of 4-year oldtwin boys, breast cancer was the lastthing she was expecting, but she re-mained positive, never asking “Whyme?” Lorraine, on the other hand, re-calls being in denial, certain Jill’s ab-normal mammogram was just amistake. Lorraine was in a Pilates classand didn’t answer the phone when Jillfirst called. When the phone immedi-ately rang again, Lorraine instantlyknew. Her heart filled with dread andshe answered. “It was devastating,”

Lorraine says. She credits Dr. Fettingwith getting them both through the di-agnosis, treatment and recovery.

Genetic testing revealed that Jillhad not inherited a BRCA mutation.There was no answer for why she devel-oped breast cancer at such an early age.Whether there were genetic clues thatcould have predicted and prevented itis the type of research the Fetting Fundsupports.

“We are in the process of identify-ing genetic changes in breast tissuethat convert normal cells to cancercells. I believe we can figure out whichchanges are necessary for breast cancerto develop and intervene,” says Fetting.

When Jill realized breast cancerwas going to be a part of her life, sheturned it into a way to help other pa-tients, joining the Breast Cancer Pro-

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

AN ESTIMATED 232,000 NEW BREASTCANCER CASES ARE DIAGNOSED INTHE UNITED STATES EACH YEAR

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


gram at the Johns Hopkins KimmelCancer Center as a patient navigatorfor newly diagnosed patients withbreast cancer. Her focus is on patientsunder age 50.

Sharing her story brings them hope.They see a survivor in her. She sees a big-ger need in them. She has seen too manyyoung women lose their lives to breastcancer, and she yearns for the day whenshe doesn’t have to sit with women asthey write letters for their children toopen on special occasions in their lives—birthdays, graduations, weddings,births—because their mothers may not bethere. For Jill, Fetting Fund research isthe key to changing this reality.

“We cut, burn and poison, and eventhat doesn't always work forever,” saysJill.

Erin Yale is among the women whoremind us of the limitations of treat-ment, even when it is diagnosed early.Erin was supposed to be one of the luckyones. Her breast cancer was detected inwhat is considered a curable stage.

In 2012, at age 30, she nursed hernewborn baby for the last time beforeshe went to the operating room for amastectomy. After learning she inher-ited a BRCA mutation, she had surgeryto remove her fallopian tubes andovaries in 2014 to ward off cancer.

Erin recalled in a video made of hertalk at a 2018 Fetting Fund event that,as the years passed, she tried to returnto her normal life as a young wife andmother, working in the corporate worldand launching Pushing Pink Elephants,a breast cancer awareness and educa-

tion endeavor focused on a better un-derstanding of prevention, health andwellbeing. “Normal,” however is rela-tive, Erin pointed out. “The weight ofrecurrence never goes away no matterhow well you feel.”

Erin had surgery, chemotherapy, ra-diation therapy and hormone therapy—everything doctors have in theirarsenal to fight breast cancer and still,in 2017 she learned her cancer had re-turned and spread throughout herbody. There would be no cure for Erin,who passed away in 2019 at 38, leavingbehind her devoted husband Steve andtheir 8-year-old-daughter.

Erin, a Fetting Fund advocate, left apowerful message, “Early detectiondoes not necessarily mean survival orbetter outcomes. I was diagnosed atStage 2, and it still advanced to the worststage,” she said. “We can make a differ-ence in the world. We need prevention.We need the Fetting Fund so peopledon’t go through what I went through. Idon’t want that for my daughter.”

Her call is championed by Fetting,Leslie and Tom, Emily, Carly, Jill andMike, Lorraine and Mark, and echoed bywomen and families around the world.

As the Fetting Fund pioneers a newway of thinking about breast cancercare, it is an uphill battle, as the lion’sshare of research dollars go to studynew therapies. Stories like these areinspiring change, however, and theearly success of Fetting Fund researchshows what is possible throughprevention.

“We know it will not be easy, butthis cannot continue,” says Fetting.“We need the same kind of concertedeffort for prevention that has beenmounted to treat breast cancer.”

The Fetting Fund is investigating thescientific benefits of natural remediessuch as the spice curcumin, broccolisprouts tea and a magnolia tree extractthat may contain properties that detoxifycarcinogens or reset the molecular errorsthat initiate breast cancer. Technological

ROUGHLY 40,000 WOMEN DIE IN THE UNITED STATES FROMBREAST CANCER EACH YEAR

GENETIC TESTING REVEALED THAT JILL HAD NOT INHERITED A BRCAMUTATION. THERE WAS NO ANSWER FOR WHY SHE DEVELOPED BREASTCANCER AT SUCH AN EARLY AGE. WHETHER THERE WERE GENETIC CLUESTHAT COULD HAVE PREDICTED AND PREVENTED IT IS THE TYPE OFRESEARCH THE FETTING FUND SUPPORTS.

Jill Mull with her mother, Lorraine Schapiro


advances mean we no longer have towait until a cancer is visible throughimaging or a lump can be felt to detectit. New molecular tests that make theinvisible visible can detect earlychanges that precede breast cancer.This includes understanding the con-nection between genetic and epigenetic(reversible chemical changes to DNA)that contribute to breast and other can-cers Then, injecting anticancer drugs ora drug like tamoxifen directly into thebreast ducts could eliminate thesechanges before a cancer has a chance togrow. Vaccines that train the immunesystem to patrol and destroy breast can-cer cells are another promising area ofstudy. Lifestyle research, such as therole of alcohol in promoting breast can-cer development, could yield simplechanges that can ward off breast cancer.

“This is just the beginning,” saysLeslie. “There is so much promise. Ican see it, and I feel that it’s going tohappen.” l

“We need prevention.

We need the Fetting Fund

so people don’t go

through what I went

through. I don’t want thatfor my daughter.”

– ERIN YALE, 1981-2019

THE PATH TOWARD A BETTER WAYMISSION OF THE JOHN FETTING FUND FOR BREAST CANCER PREVENTION

The mission of the Fetting Fund is to identify the one woman in eight who is at high risk for developing breast cancer in her lifetime and to develop safe, effectivenatural products and drugs to prevent that breast cancer. Of equal importance, theresearch supported by the Fetting Fund seeks to identify the seven in eight womenwho will not develop breast cancer. Medical caregivers will be able to provide moreprevention efforts for those at risk and reassure those who are not.

Traditional funding sources are focused on advances in treatment and the questfor a cure for breast cancer. As a result, funding for prevention research haslagged. The Fetting Fund relies on private philanthropy to support pilot preven-tion studies that will produce results and allow Johns Hopkins prevention scien-tists to design more substantial research plans and compete successfully forlarger grants. Our vision is to support enough high quality pilot studies that ourbreast cancer scientists will be able to attract funding for a rich portfolio of largebreast cancer prevention studies. The Fetting Fund is a catalyst for developmentof a critical mass of breast cancer prevention science and breast cancer preven-tion scientists resulting in a world class breast cancer prevention program at theJohns Hopkins Kimmel Cancer Center.

Erin Yale with her family

10 BREAST MATTERS • 2020/202110 BREAST MATTERS • 2020/2021

{ Mia }

{ Tracie}

Study Helps Breast Cancer Survivors Reach TheirWeight-Loss Goals

Attaining a healthy weight is even more important for breast cancer survivors, says new Kimmel Cancer Center breast cancer expertJennifer Sheng, M.D. Studies showthat losing just 5% body weight canhelp survivors combat fatigue, im-prove their body image, and simply

feel better after the trying rigors of breast cancer treatment.In addition, research suggests that weight loss can lower therisk of breast cancer recurrence. A new study open to over-weight breast cancer survivors treated at Johns Hopkins whohave completed treatment and want to lose weight will offerbehavioral intervention that’s been tested before. After twomonths, if logging calories, tracking and increasing physicalactivity, and working a coach doesn’t work, the FDA-ap-proved weight loss drug naltrexone/bupropion (Contrave)will be pres cribed for the next four months.Read more: http://bit.ly/2n6qG80

A Model for Breast Cancer Care and WellnessMary Wilkinson, M.D., new clinical director for the JohnsHopkins Kimmel Cancer Center Under Armour BreastHealth Innovation Center, is overseeing a new model ofbreast cancer care in which illness and wellness exist in thesame space. Read more: http://bit.ly/2pqeWxL

A Patient AppHormone-blocking drugs are a pow-erful weapon against breast cancer.At the same time, these drugs canhave significant side effects—someso uncomfortable that they drive pa-tients to quit taking them beforecompleting the typicalfive-year course, often

without notifying their doctors until the nextscheduled appointment weeks or months away.Breast cancer expert Karen Smith, M.D., says anew app called Thrive delivers education,helps patients track their appointments, andcommunicate with their care providers abouttheir treatment plans. Now, a new electronicpatient reported outcomes module calledePro helps patients to report what medicinesthey were prescribed and symptoms they arehaving. It also notifies the care team if thesymptoms pass a severity threshold or ifthey’ve unexpectedly discontinued taking their medications.Read more: http://bit.ly/2pnHaJr

A New Leader of the Gene TeamJessica Tao, M.D., is the new direc-tor of the GAITWAY program, shortfor Genetic Alternations In TargetsWith 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 researchand targeted drugs to help match the right medicines tocancer patient’s specific genetic alterations. She received agrant from the Maryland Cigarette Restitution Fund to betterunderstand how tumor cell-free DNA—tiny bits of genetic ma-terial shed from malignant lesions that can be extracted from a blood sample—might better benefit patientsand guide treatment. Read more: http://bit.ly/2mXg4rM

WHAT’S NEW


The Possibility forBetter Results WithFewer TreatmentsAs our knowledge ofbreast cancer hasgrown, so have thenumber of therapymodalities and proto-cols used to treat thisdisease, from combi-

nations of chemotherapy to targeted treatments that attackmalignant cells carrying specific genetic variations. AntonioWolff, M.D., and colleagues are investigating ways that patients can get more from less by using more targeted treat-ments, changing the way that treatments are administered,or even carefully stratifying patients to determine who mightbe able to avoid certain treatments altogether. Read more: http://bit.ly/2n0te7s

Cancer TreatmentWithout Hair LossStarting this fall, Kimmel Cancer Center patientswith breast cancer or othergynecologic cancers willhave the option to use anew, FDA-approved devicecalled a “cooling cap” that

prevents or minimizes chemotherapy-induced hair loss.Read more: http://bit.ly/2Mo3iLE

The Breast Center at Green Spring Station moved to a

brand new space in its existing suburban location.

When patients come to the Kimmel Cancer Center at

Greenspring Station Pavilion III, they are greeted by more

than gleaming new private exam rooms; modern infusion

bays; and on-site imaging, pharmacy and lab services. The

entire practice is designed to provide an optimal cancer

care patient experience which now also includes surgical

oncology onsite. Read more: http://bit.ly/2oAPHsb

“I’m excited to be part of apractice that’s offering moreservices in a setting wheremany patients want to be.It’s a beautiful site. Thebuilding is new, and theservices are world-class.”

–R I M A C O U Z I , M . D .


Beginning this fall,patients will be able toundergo surgicalprocedures at the GreenSpring Station pavilion.Surgical oncologist, LisaJacobs, M.D., calls thechange a “hugeadvantage” for this patient population.

WORLD-CLASS CARE IN ACOMMUNITY SETTING

EVENTROUNDUPUpcoming All events are FREE and open to allbreast cancer survivors, thrivers andcaregivers unless otherwise noted.

Support GroupsEarly Stage Young Women’s Support Group1st Monday of the month 6-7:30 p.m., Green Spring Station Pavilion IIIContact: [email protected], (410) 583-2972

Metastatic Support Group3rd Monday of the month 6-7:30 p.m., Green Spring Station Pavilion IIIContact: [email protected], (410) 583-2972

Walk and TalkOpen to all breast cancer survivors and thrivers3rd Friday of of the month 9-10 a.m., Meadowood Regional Park orTowson Towne Center (weather dependent)Registration is requiredContact: [email protected], (410) 583-2972

Breast Cancer Survivors Program4th Thursday of the month6-8 p.m., Johns Hopkins Bayview, Medical Education CenterContact: [email protected], (410) 550-6690

Integrative Medicine Lunch WorkshopA monthly workshop on integrativemedicine modalities. Topics vary, butprevious ones include yoga, medita-tion, nutrition, acupuncture, hypnosisand traditional Chinese medicine. Dates vary.Contact: [email protected], (410)502-3472

WebinarsExercise and Breast CancerDec. 4, 2019, 12-1pmMethods to Enhance Breast CancerSurvivorshipJan. 9, 2020, 12-1pmUpdates in Breast Cancer Researchand Clinical CareFeb. 26, 2020, 12-1 pmRegistration is requiredhttps://public.onc.jhmi.edu/survivorshipwebinars/Contact: [email protected], (410)502-3472

RetreatA Journey of Courage and Hope for Women with Metastatic Breast CancerApril 12-14, 2019A weekend retreat for metastatic breastcancer patients and women who supportthem to gather information and supporton confronting metastatic breast cancer.Discussions include routines of treat-ment, daily life challenges, reflections,and networking with others in a healingand renewing environment.Contract: [email protected], (443) 287-2964

Prior Events RecapSurvivor Soul Stroll On Saturday, May 11, 2019, TeamHopkins participated in the 3rd AnnualSurvival Soul Stroll: A Breast CancerAwareness Walk at Canton WaterfrontPark. Our team included employees,volunteers, cancer survivors, andcommunity members.

Survivorship Day

On May 5, 2019, our Breast CancerProgram hosted its 5th Annual BreastCancer Survivorship Day at the BWIMarriott Hotel. More than 100participants attended, learning aboutintegrative medicine, medicalmarijuana, metastatic breast cancer,clinical updates, immunotherapy,“chemo brain” and exercise. Keynotespeaker, Susan Love, M.D., M.B.A.,discussed breast cancer prevention andemerging new treatments.

Swim for Engie Against CancerThe 4th annual swimathon was held

Aug. 24,2019,honoringmetataticbreast

cancer survivor Engie Mokhtar. Thisyear’s event supported research by Otis Brawley, M.D., to close racial,economic, and social disparities incancer prevention, detection andtreatment.

Promising New TreatmentsBrian Christmas, Ph.D., who works inthe laboratory of breast cancer expertEvanthia Roussos Torres, M.D., Ph.D.,presented advances in immunother-apy for breast cancer at the Judith A.Lese Breast Cancer Foundation annualdinner. The foundation has supportedbreast cancer research at the KimmelCancer Center since 2004.


TargetingBRCA1 and 2:A research teamled by Victor Velculescu, M.D.,Ph.D., was amongseven awardedgrants from theGray Foundationfor new ap-proaches to theearly detection, diagnosis, andtherapy of cancersrelated to BRCA1and BRCA2 gene mutations.Velculescu will collaborate withVered Stearns,M.D., and KalaVisvanathan,M.B.B.S., on

research aimed at early detection ofbreast and ovarian cancers.

Navigating Breast Cancer:Kimmel Cancer Center Advisory BoardMember Debra Huber made a gift tosupport a social worker/breast cancerpatient navigator. Huber was inspiredby her sister, a breast cancer survivor,to do what she could to ease the traumaof cancer diagnosis and treatment.

New Laboratory Test Could Make Global Impact: The journal ClinicalCancer Research reported on a new laboratory test developed by SaraswatiSukumar, Ph.D., that identifies chemical changes to a group of cancer-relatedgenes and can accurately detect which breast tumors are cancerous or benign, anddo it in far less time than gold-standard tests on biopsied breast tissue. The test hasthe potential to dramatically reduce the time needed to make a definitive breastcancer diagnosis in poorer countries. Breast cancer incidence is rising around theworld, and the test—an easy-to-use cartridge—could be especially useful in placeswith fewer resources and where mortality rates from breast cancer are muchhigher compared to the developed world. The research was supported, in part, bythe Breast Cancer Research Foundation.

NOTEWORTHY

HONORS AND AWARDSDipali Sharma, Ph.D.Society of American AsianScientists In Cancer ResearchOutstanding Achievement Award

Roisin Connolly, M.B.B.Ch.Eastern Cooperative OncologyGroup-American College ofRadiology Imaging YoungInvestigator Award

Stephanie Gaillard, M.D.,Ph.D.Gynecologic Oncology GroupFoundation Scholar InvestigatorAward

Katy Gaffney, R.N.Friends of OncologyNursing ClinicalExcellence Award

Daniele Gilkes,Ph.D.The Best of theAmericanAssociation forCancer Research

Journals Collection: AuthorProfilesMost-cited Article. Read it here: http://bit.ly/2ml3ySx

Sukumar lab investigator BradleyDowns assembles the cartridges.

Help Us Make a DifferenceEach contribution to the Johns HopkinsKimmel Cancer Center makes a differ-ence in the lives of cancer patients hereat Johns Hopkins and around the world.

Our physician-scientists are lead-ing the way on many of the scientificbreakthroughs in cancer, and your do-nation will support patient care andinnovative research that is translatedto better, more effective treatments.We are also focusing on ways to pre-vent cancer and support survivors.

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If you prefer not to receive fundraising communications fromthe Fund for Johns Hopkins Medicine, please contact us at 877-600-7783 or [email protected]. Please include yourname and address so that we may honor your request.

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To mail your donation:Johns Hopkins Kimmel Cancer Center 750 E. Pratt St., Suite 1700 Baltimore, MD 21202

To contact our developmentoffice: Phone: 410-361-6391Fax: 410-230-4262Email: [email protected]

Visit us on the web:hopkinscancer.org.

practitioner Katie Papathakis,C.R.N.P. telling her, “Don’t worry. Wehave something else we want to try.”

Now, Angela takes a pill called pal-bociclib (Ibrance), a targeted therapyfor patients who have a type of breastcancer classified as hormone receptorpositive but HER2 negative. She alsocomes to the Kimmel Cancer Centerevery four weeks for an injection of fulvestrant (Faslodex) to slow thegrowth of her breast cancer.

The treatment is working. Angela’scancer is under control and she is painfree. “All I take now for pain is a littleTylenol,” she says.

“We want all women to be aware ofnew treatments, clinical trials and sup-portive care options available to them,”says Vered Stearns, a breast cancer expert and Director of the Women’sMalignancies Program at the KimmelCancer Center. “With the right care,women can live with advanced breastcancer for years and decades.”

This is the inspiration for a newmultispecialty clinic for patients livingwith advanced breast cancer plannedby Stearns and colleagues.

“About 30% of the breast cancerpatients seen regularly in our clinichave advanced breast cancer,” says

oncologist or a nurse practitioner as a‘quarterback’ who will coordinate thecare plan, navigator, nutritionist, socialworker, palliative care provider tomanage pain and other symptoms, andan exercise and rehabilitative medicineexpert. Optional services will include aspiritual provider, financial counselor,integrative medicine, sexual health ed-ucator and child life specialist.

Angela feels fortunate that she gotto the Kimmel Cancer Center, and al-though she knows it may sound odd,she says breast cancer has had a posi-tive impact on her life. “It has made mea better person,” she says. “People seeme and can’t believe I have breast can-cer. I feel like I am spreading joy andhope to others.”

The experience also inspired Angela to turn a hobby into a business.A good eye and knack for interior de-sign led to a career, working with realestate agents to stage homes, boostingtheir appeal to prospective buyers.

Stearns. “As our program grew, we recognized the need for new approachesto specifically support individuals livingwith advanced breast cancer and beganworking to raise funds for this new clinic."

Stearns says the needs of individu-als living with advanced breast cancerare different from those with earlystages of the disease and change and in-tensify over time. The specialty clinicfor those with advanced breast cancerwill be set up to provide the most ad-vanced cancer treatment while sup-porting patients’ unique needs. Stearnssays this includes emotional and spiri-tual support while living with an un-known prognosis, guidance concerningcomplex treatment decisions, manage-ment of disease symptoms and medica-tion side-effects, support for all familymembers, including specialized, ageappropriate programming for children,and advanced care planning.

Patients will benefit from a coregroup of providers, including a medical

“WITH THE RIGHT CARE, WOMEN CAN LIVE WITHADVANCED BREAST CANCER FOR YEARS ANDDECADES.” - VERED STEARNS

Living with Metastatic Breast Cancer (continued from page 1)

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