A publication of the Breast Cancer Coalition FALL 2002

On the front line in the battle against breast cancer.

PBCC ADVOCACY IN ACTION No Time Limit on Reconstructive Surgery Legislative Victory for Breast Cancer Survivors

n a tremendous victory for toward expanding that pro- breast cancer patients in tection,” said Senator Holl. IPennsylvania, Senator “The support we received on Edwin Holl and Representa- this bill is a strong statement tive George Kenney led the that the legislature is con- Pennsylvania Breast Cancer cerned about women’s health Coalition’s fight for legislation issues and is working to pro- to remove the 6-year time vide important coverage to limit on mandatory insurance breast cancer patients.” coverage for reconstructive The PBCC thanks the surgery following mastec- breast cancer advocates tomy. The new law signed by across the state who pressed Governor Schweiker, which for this legislation. We salute went into effect June 28, Senator Holl and Represen- 2002, requires all insurance tative Kenney for their companies to cover recon- leadership, the work of insur- structive surgery and ance commissioner Diane abolishes the previous 6-year Koken, the Pennsylvania In- limit on coverage. surance Federation and In addition to also covering Representative Mike Veon. Senator Edwin Holl opposite-breast reconstruc- tion, the law requires doctors Can a woman who loses a breast to cancer expect her insur- to discuss reconstructive op- ance company to pay for reconstruction? tions with the patient and insurers to provide written Can she have surgery years following her mastectomy and notice of the insurance. The still have the insurer pay? law (Act 81 of 2002) directs Can she expect insurance coverage for surgery necessary to that all healthcare policies achieve symmetry with her opposite breast? also cover physical complica- tions including lymphedema. The answer to all of these questions is YES in Pennsylvania “The previous law offered thanks to the hard work of PBCC advocates across the state and some protection to women the support of our friends in government. who have mastectomies, but Together We Can Make a Difference! the new law goes a long way Pennsylvania Breast Cancer Coalition Pat Halpin-Murphy President and Founder, Pennsylvania Breast Cancer Coalition ADVOCACY WORKS! reast cancer activists have been very successful in win- ning victories for women affected by breast cancer. The BPBCC played a crucial role in extending insurance cov- erage for women diagnosed with breast and cervical cancer. Qualified women will now have immediate free medical treat- ment completely paid for by Medicaid. The National Breast a message from Cancer Coalition led the fight in Washington by lobbying Con- gress to change the law and allow states to provide free medical treatment to qualified women with breast cancer. Then it was up to advocates to urge the Pennsylvania legis- lature to provide the funds to make free medical benefits happen in our state. Advocates won again! Next we wanted to change state law so that there would be no time limit on reconstruc- tive surgery after a mastectomy. In 1997, when the PBCC first fought for legislation requiring insurance companies to cover the cost of reconstructive surgery, some insurers blocked our bill. In order to help women have their reconstruction paid for by insurance companies, we had to compromise and accept a 6-year limit on required coverage. This year we worked to remove the 6-year limit, and the insurers joined with the PBCC advo- cates to pass the new law. The reason Congress in Washington and the legislature in Pennsylvania pass laws that help women and their families is that breast cancer activists are informed, active and organized advocates. TOGETHER we can make a difference.

PBCC ANNOUNCES 2 ADDITIONS TO BOARD OF DIRECTORS

he Pennsylvania Breast Cancer Coalition ap- Tpointed Sandy Christianson, Esq. and June Hoch to its Executive Board of Directors in May. Sandy, who runs Mediation and Associated Services in Camp Hill, has served on the Board for several years but June Hoch only recently became Secretary in an official capac- ity. June Hoch, Senior Associate at S.R. Wojdak & Associates in Harrisburg, is now Treasurer. We welcome both Sandy and June as officers on the PBCC Board of Directors. Sandy Christianson 2 Pennsylvania Breast Cancer Coalition

Survivor Spotlight

Susan Barbe

Cranberry Township, PA Susan, shown here with husband Tom, and sons (L-R) Adam, Eric and Sam.

usan Barbe was diagnosed to show up around the scar on saved my life. Because I was with breast cancer 2 ½ years my breast. It was very discon- nursing, I was more aware of my Sago at age 31. She was certing to be able to see my body. I don’t know when I would breast-feeding her youngest son at cancer. But the good news was, have found it if it weren’t for that the time and noticed a dimple in I could also see it getting smaller baby. as a result of the chemo. I am her left breast. Her Ob/Gyn Q: What is your current health still on very mild chemo treat- thought it was a clogged milk duct, status? ments. but ordered a sonogram just to be A: I feel great. I don’t feel sick at sure. Susan blesses him every day all. When people find out I have cancer, they’re shocked. Cancer for that suggestion. Here is her I feel like Norm on the story of survival and of her contin- is chronic, not always fatal. I just ued battle with the disease. TV show “Cheers” when had a chemo treatment yesterday, I walk in to get my and I stay on top of it by going for check-ups every three Q: What was your initial reaction treatments. Everybody to the diagnosis? months. I’m living under the A: People always talk about tunnel knows my name. I’ve assumption that I’m going to be vision. Well that’s exactly what been there longer than around for a very long time. it was. I was in shock. I really some of the nurses. thought it would be just a clogged Cancer certainly hasn’t slowed milk duct. Susan down. It was very difficult Q: What happened next? Q: Which was more difficult for for her to find just 30 minutes to A: Everything happened so fast. In you…the initial diagnosis or talk to me. She laughed out loud January of 2000 I had a biopsy the recurrence? when I asked her what she likes one week and a mastectomy the A: I really had a harder time with to do in her spare time. “Spare next. Then I started chemo- the recurrence. It felt like I went time?? HA!” She keeps busy with therapy. Reconstruction was too through all of that for nothing. I kids’ birthday parties, home reno- much to think about at the time. went into a depression and vations, baby showers, and her I just wanted the cancer out. I couldn’t get myself out of it. work as a freelance media buyer. went through surgery, chemo- Thanks to the help of a therapist Susan recently became the new therapy and radiation. I feel like on staff at the hospital, I’m doing Butler County participant in the Norm on the TV show “Cheers” much better now. PBCC traveling photo exhibit and when I walk in to get my treat- Q: If you could go back to the she helps publicize the Income Tax ments. Everybody knows my beginning of this experience Check-Off for Breast Cancer Re- name. I’ve been there longer than knowing what you know now, search campaign. I would venture some of the nurses. would you do anything differ- to guess that in any spare time Q: I understand you had a recur- ently? she might have, she’s busy count- rence? A: You always wish you had found ing her many blessings. A: In September of 2001 a spot it sooner. But I was pregnant showed up on my back during a and then I was nursing. I know To profile someone in bone scan. We did an MRI and that pregnancy didn’t cause my “Survivor Spotlight”, a bone biopsy. It was a recur- breast cancer, but it did make it email Heather Hibshman at rence. The day I got the news harder to find. However, I truly [email protected] from that biopsy, bumps started believe that having that baby 3 Pennsylvania Breast Cancer Coalition “Everything’s Coming Up Roses”

n elegant garden party to Abenefit the Pennsylvania Breast Cancer Coalition was held June 23 in Harrisburg at Felicita Resort’s beautiful Italian Gardens. Nearly 300 people turned out to support the efforts of the PBCC in a spectacular setting of roses, fountains and sculptures. Special guests included First Lady Kathy Schweiker and Former First Lady Michele Ridge. The garden party was hosted by Mrs. Alice Angino and co-chaired by Joan Prescott and Rosemary Chiavetta. The PBCC thanks the committee and everyone who supported this event. Please enjoy these photos that depict the beauty of Felicita and of those in attendance.

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4 Pennsylvania Breast Cancer Coalition PROGNOSTIC FACTORS FOR EARLY STAGE BREAST CANCER BY JOHN H. GLICK, M.D. DIRECTOR, ABRAMSON CANCER CENTER OF THE UNIVERSITY OF PENNSYLVANIA

hen a patient with breast can- rate measurement of the tumor size of The pathologist also measures the cer receives their diagnosis, the invasive component is extremely im- grade of the tumor by looking at the his- Wquestions immediately come portant in determining the patient’s tologic grade, nuclear grade, and the into the mind of the patient and their prognosis. number of mitoses per high power field. family: “What is going to happen to me? The single most important prognostic All this information is assembled to- What is my prognosis? Do I need che- factor is the pathologic status of the re- gether and the patient’s tumor is given motherapy or hormonal therapy?” gional lymph nodes: node-negative vs. a grade I, II, or III. Patients with poorly Patients rightfully want to know what differentiated tumors (Grade III) will have their prognosis is, which is defined as a higher risk of recurrence and always an estimate of their chance of long-term require adjuvant chemotherapy and/or disease-free survival without recurrence. hormonal therapy. The most relevant factors for the estima- Hormone receptor status is deter- tion of risk recurrence remain: the mined by measurement of the estrogen pathologic type of their breast cancer; and progesterone receptors on the inva- whether their lymph nodes are involved sive tumor component. This is done by with cancer, and the number of nodes the pathologist. Patients with hormone involved; the pathologic size of their tu- receptor positive tumors are classified as mor; histologic and nuclear grade; age “endocrine - responsive” and are candi- of the patient at diagnosis; and the sta- dates to receive Tamoxifen or other tus of oncogene over-expression. adjuvant hormonal therapy. Patients When the pathologic diagnosis of duc- with negative estrogen and negative tal carcinoma in situ is made, this progesterone receptors are classified as non-invasive form of breast cancer car- “endocrine - non-responsive” and do not ries an excellent prognosis with either receive adjuvant hormonal therapy. mastectomy or lumpectomy plus radio- Finally, recent evidence indicates that therapy provided pathologically negative 25-30% of patients with breast cancer margins can be obtained by the surgeon will overexpress or over amplify the at the time of lumpectomy. Ductal car- oncogene Her/2-Neu. Testing for the cinoma in situ does not metastasize to John Glick, M.D. presence or absence of this oncogene is axillary lymph nodes and does not done by the pathologist initially on the spread to other organs in the body. When a patient with breast basis of immunohistochemistry determi- Therefore, patients with ductal carci- nation and the presence or absence of noma in situ do not require adjuvant cancer receives their diagno- this oncogene on the pathologic speci- chemotherapy. Patients should have a sis, questions immediately men of tumor. In equivocal cases, FISH discussion with their surgeon or medi- come into the mind of the (fluorescence in situ hybridization) test- cal oncologist as to the risks and benefits ing is done to determine whether the of receiving Tamoxifen as a patient and their family: patient is Her2/Neu negative or positive. chemopreventative agent. “What is going to happen to Patients that have a positive Her2/Neu However, most patients with breast me? What is my prognosis? test, tend to have a more aggressive cancer have invasive disease consisting Do I need chemotherapy or prognosis and should receive adjuvant of either infiltrating ductal and/or infil- chemotherapy including Adramycin. trating lobular carcinoma. When hormonal therapy?” Once the pathologist, surgeon, radia- invasive breast carcinoma is present, the tion oncologist and medical oncologist size of the invasive component is mea- node-positive disease. For patients with have access to all this prognostic infor- sured by the pathologist. Based on positive lymph nodes, the number of mation, the patient generally sits down tumor size alone, patients with tumors involved nodes is a very important prog- with their oncologist who estimates their measuring less than or equal to 2.0 cm nostic factor. As the number of positive risk of recurrence without adjuvant che- are considered Stage I. However, these nodes increases, there is a greater motherapy and/or hormonal therapy, patients must also have negative senti- chance of recurrence. Although all pa- and the potential benefit from adminis- nel and/or axillary lymph nodes to be tients with involved nodes are at tering adjuvant therapy. It is now clear considered Stage I. Patients who have increased risk of recurrence, there re- that the widespread application of adju- a tumor size greater than 2.0 cm, but mains a gradient of absolute risk of vant therapy has been responsible for a less than or equal to 5.0 cm are consid- recurrence. All patients with positive significant decrease in the recurrence ered to have a Stage II breast cancer nodes require adjuvant chemotherapy, rate of patients with breast cancer, also irrespective of the pathologic status of as do node-negative patients with ad- resulting in a decrease in mortality over their axillary lymph nodes. Thus, accu- verse prognostic factors. the past decade. 5 Pennsylvania Breast Cancer Coalition Grassroots Partners across the State

• Wedding gifts to PBCC Kellie Robertson, PhD, assistant Professor of English at the University of Pittsburgh, was married in June and asked guests to donate to the PBCC in lieu of traditional wedding gifts. Kellie’s friends and family donated $575 in honor of Kellie and her new husband Mike Witmore. Kellie’s “Survi- vor Spotlight” story can be seen in the Summer issue of Frontline. Congratulations Kellie and Mike, and thank you for thinking of the PBCC on your wedding day. • Unique donations The Pennsylvania Association of Peri-Anesthesia Nurses (PAPAN) is a statewide group of recovery room and pre- and post-op nurses. Fran Blatchley is a member of this group and is the Union County repre- sentative in the PBCC’s traveling photo exhibit. Fran encouraged PAPAN to send one dollar for each of its members. PAPAN donated $358 to the PBCC. Thank you Fran and all of the Pennsylvania nurses who contributed.

Jeanette and Patrick Sparr, of Lancaster County, run a carnival concession stand each summer. This year they wanted to give a portion of their proceeds to the PBCC. With carnival season still in full swing, the Sparrs have donated $375 so far from 2 festivals in Berks County. Thank you Jeanette and Patrick for this unique way to raise money and visibility for the PBCC. • Corporate Support PPO&S, an ad agency in Harrisburg, hosted a Client Entertain- ment Project in June. Through the generosity of their clients, PPO&S raised $325 for the PBCC. Thank you for thinking of us and for the wonderful work you do in the community.

If you know of a special way to support the PBCC, please call Dolores Magro at 717-234-6132 or email [email protected]. 6 Pennsylvania Breast Cancer Coalition HAPPY BIRTHDAY TO THE CUMBERLAND VALLEY BREAST CARE ALLIANCE! Coming To he Cumberland Valley Breast Care Your Community TAlliance (CVBCA), led by Sharon Brosious of Chambersburg, turns 5 years September 26-October 7 old this November. CVBCA was formed “67 Women – 67 Counties” as a result of the PBCC’s traveling photo Photo Exhibit at Westmoreland exhibit coming to the Chambersburg com- Co. Community College munity. Sharon formed an exhibit Youngwood, PA planning committee that consisted of October 5 dedicated members of the community, “Westmoreland Walks: and that committee grew into what is Taking Steps Against Breast Cancer” now the thriving and successful CVBCA. Greensburg, PA This organization is an extraordinary ex- ample of what one person can do and the difference one idea can make. October 9 Happy Birthday Cumberland Valley Breast Care Alliance. We wish you “Legacy of Love” Whitaker Center for much luck and success with all your future endeavors and we are honored Science & the Arts to be involved with such a committed grassroots organization. Harrisburg, PA October 10 PBCC ENGLISH/SPANISH “Keystone Breast Cancer Conference” SHOWER CARDS Harrisburg Hilton AVAILABLE TO Harrisburg, PA October 15 YOUR GROUP “Friends Helping Friends” he Pennsylvania Breast Cancer Coalition now to benefit the PBCC Thas shower cards available for your support All Boscov’s Locations group, health fair, or other breast cancer out- October 21-November 1 reach event. These cards contain step-by-step “67 Women – 67 Counties” information in English and Spanish, and are pro- Photo Exhibit at Concilio vided by the PBCC and HealthAmerica. Contact , PA Kim Eubanks at 800-377-8828 x 104 or October 25-27 [email protected] for your shower cards “Flying Colors” Art Show today. Chester Springs, PA Visit our website www.pabreastcancer.org PITTSBURGH CELEBRATES for details on any NEW ALLEGHENY CANCER CENTER of these events. llegheny General Hospital unveiled its magnificent new Allegheny ACancer Center July 16, and Pat Halpin-Murphy was on hand to help celebrate. The hospital hosted an open house for board mem- bers, doctors, administrators and supporters, who were treated to a tour of the state-of-the-art facility. In recognition of the PBCC’s out- standing advocacy efforts, Pat Halpin-Murphy was asked to be the keynote speaker at a dinner that evening. PBCC Board Member, Dr. Norman Wolmark, will top the ranks at the new center as Chairman of the Department of Human Oncology. Dr. Norman Wolmark (far left), Director Allegh- Dr. Michael O’Connell, formerly of the Mayo Clinic, will serve as di- eny General Hospital Breast Care Center, joins rector of the new center, a five-story building next to the main hospital. PBCC President Pat Halpin-Murphy; Kip Goldberg, V.P. of AGH; and Herb Elish, Director, We salute Allegheny General Hospital and everyone who worked so Carnegie Library and Chairman of the Board at hard to build this extraordinary facility for patients fighting cancer. AGH, for the Allegheny Cancer Center opening. 7 Pennsylvania Breast Cancer Coalition

n a return visit to Delaware ICounty, the PBCC’s traveling KEYSTONE BREAST photo exhibit was displayed at CANCER CONFERENCE Granite Run Mall June 6-16. DON’T MISS THIS EXCITING 2-DAY EVENT.

ow is the time to register for the Keystone Breast Cancer Conference October 9-10 at the NHarrisburg Hilton. Register online at www.pabreastcancer.org or call 800-377-8828 x 104. Educational workshops include topics on genetic risk, the mind/body connection, clinical trials, breast cancer in young women, and much more. PBCC President & Founder, Pat Halpin- Murphy (center) is joined by (L-R) PBCC Pink Ribbon Awardee Vice President for Development, Bonnie ~ First Lady Kathy Schweiker, PBCC Honorary Chair ~ Squires; Delaware County exhibit par- ticipant, Adrienne Fox-Miniman; Potamkin Awardee Montgomery County exhibit participant, ~ John Glick, MD, Director, Abramson Cancer Center MiHyung Murray; and Dr. Merrill Solan, Medical Director, Jefferson Radiation of the University of Pennsylvania ~ Oncology Center at Riddle Health Care Center. Pink Ribbon Awards Luncheon entertainment Exhibit is sponsored by the ~ Millionaire Strolling Strings of PBCC and funded by the PA Department of Health. Williamsport Area High School ~ Is all of your mailing information up-to-date? October 9 Legacy of Love If not, please contact evening reception features 2002 Kim Eubanks at as our keynote speaker. 800-377-8828 x 104 or Miss Harman will address “Breast Cancer in America: [email protected] with Caring Community by Community”. your current information.

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This issue of Frontline is made possible thanks to the generous donation of Speaker of the House Matthew J. Ryan