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Patriot Ledger

LOCAL NEWS

Adversity becomes woman's inspiration: She's leading drive to set up cancer registry

By DARRYL ISHERWOOD
The Patriot Ledger

Dec. 5, 2000, was a devastating day for Susan Asci of Quincy.

That was the day doctors told her she had an advanced case of inflammatory breast cancer, a rare and particularly deadly form of the disease.

Inflammatory breast cancer accounts for only about 2,000 of the nearly 200,000 cases of breast cancer diagnosed each year. The aggressive cancer kills more than half of its victims, compared to a 25 percent mortality rate for less-aggressive forms of breast cancers.

The disease has few symptoms. Unlike other breast cancers, it does not cause a lump.

Asci was 39 when she noticed a redness and a swelling on the side of her breast, but she dismissed it as sunburn or a minor infection. After waiting a few weeks, she decided to see a gynecologist, who immediately referred her to a breast surgeon at Tufts-New England Medical Center. Even then, Asci didn't believe she had cancer.

‘‘I remember saying that if I had cancer I'd know it,'' said Asci.

After a biopsy and an anxious week of waiting, the doctor confirmed her worst fear.

‘‘All of a sudden, you go from being young, healthy and active to walking into a room and finding out you have cancer and it's in an advanced stage,'' Asci said.

She was immediately introduced to oncologist Dr. Donald Lawrence, who told her she would need to endure eight months of treatment, including chemotherapy, surgery and radiation.

‘‘It was devastating,'' Asci said. ‘‘I vowed to myself that if I lived through it all, I'd raise some money for Tufts-New England Medical Center.''

Asci had done some reading on her disease and discovered that very little research existed. She asked Lawrence, who confirmed that the disease was rare and little research had been done.

When she made it through eight months of treatment, Asci decided to make good on her vow to raise some money so doctors could gain a better understanding of the disease that had so changed her life.

She read an article in The Patriot Ledger about a woman who had contracted a rare form of blood cancer and was raising money for research on the disease.

‘‘I called the woman for some advice on raising money and she was really upbeat and had a lot of energy. She was really inspirational,'' Asci said.

Asci took her plan to Lawrence, who was enthusiastic about the prospect, and less than a month later, she met with Dr. Jack Erban, chief of hematology and oncology, and director of the breast cancer program at Tufts-New England Medical Center.

Erban outlined a plan to begin research on the disease. The plan included the development of a registry to track inflammatory breast cancer nationwide.

‘‘The hospital wants to collect information on other patients. They hope to go back and use the information to try to study the behavior of the disease and learn something about the genetics of breast cancer,'' Erban said.

The registry will be the first of its kind for this type of breast cancer, but Erban says that the study goes well beyond just this rare form of cancer.

‘‘Exceptional forms of cancer lead to great breakthroughs and exceptional thinking,'' Erban said. ‘‘It's not just about understanding a rare disease, but also to provide more insight into all forms of breast cancer.''

Asci's goal is to raise $50,000 to get the project off the ground. She says she is about half way to her goal.

She has signed up several corporate sponsors, including Blue Cross-Blue Shield, Savings Bank Life Insurance and UPS, and hopes to find several more as she attempts to hit her goal by the end of the summer.

More than $100,000 is needed to establish the cancer registry, with grants and other funding needed to continue research.

For more information on inflammatory breast cancer or the fund-raising effort, call 617-636-1799.

Darryl Isherwood may be reached at disherwood@ledger.com.

Copyright 2002 The Patriot Ledger
Transmitted Monday, June 24, 2002

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Checks, 100% tax deductible, can be mailed to:

I.B.C. Initiative Fund

Tufts, N.E. Medical Center

Care of Christine Flynn

Development Office, Box 231

750 Washington Street

Boston, MA  02111

-----------------------------------

Support group info. Email: Sue Asci

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Boston Herald

Breast cancer survivor creating research registry

by Michael Lasalandra
Tuesday, October 1, 2002

Anyone wanting more information or to make a donation may call the IBC Initiative at 617-773-8674 or the Tufts-NEMC development office at 617-636-1799.

The Inflammatory Breast Cancer Initiative

at Tufts-New England Medical Center

Presented by:

Project Directors

Dr. John Erban

Chief, Director of Hematology/Oncology

Director, Breast Cancer Program

and

Dr. Donald Lawrence

Medical Oncologist

Division of Hematology/Oncology

2002 

The Inflammatory Breast Cancer Initiative

 at Tufts-New England Medical Center

            Inflammatory breast cancer (IBC) is generally considered to be the most aggressive and lethal form of breast cancer. Only 34% of women diagnosed with IBC are still living three years after diagnosis, compared with 90% of patients with other types of breast carcinoma.  IBC affects women who are, on average, significantly younger than those with other forms of breast cancer. Although it is relatively uncommon, accounting for 1% to 3% of all breast cancers, the young age at diagnosis and the high mortality rate of IBC result in a disproportionate number of years of life lost to breast cancer.  Alarmingly, the incidence rate of IBC has doubled between the 1970's and 1990's, for reasons that are not clear.  Despite this fact, relatively little research has focused on IBC.

            IBC has clinical and pathologic features that distinguish it from other types of breast cancer.  Often, a well-defined lump is absent; instead, patients present with redness and swelling of the breast.   Patients are frequently misdiagnosed as having an infection and treated with antibiotics.  Due to the aggressive nature of IBC, significant progression can occur with even a brief delay in diagnosis.  Microscopically, tumor cells are found to invade and occlude the lymphatic channels of the skin of the breast in IBC. 

            Surgery and radiation therapy, the mainstays of treatment for conventional breast cancer, are by themselves ineffective for IBC.  Metastatic spread universally develops, and less than 5% of patients with IBC treated only with surgery and/or radiation survive for five years.  These dismal results have led to the inescapable conclusion that microscopic tumor cells have already spread widely through the body even at the time of diagnosis of IBC.  Chemotherapy therefore plays a critical role in IBC, usually as the initial treatment of choice.  In clinical trials of combined-modality treatments including chemotherapy, surgery and local radiation therapy, three year survival rates of 40-70% have been reported.  Despite the improvement in outcomes achieved with chemotherapy, IBC remains the deadliest form of breast cancer.

            IBC is generally considered to be a distinct disease entity, differing from conventional breast cancer in its clinical manifestations, microscopic appearance, molecular profile, and requiring a different approach to treatment.  Despite this, research on IBC is very limited.  Clinical trials are the means by which progress in the treatment of breast cancer (and cancer in general) has been made.  As opposed to the clinical trials in conventional breast cancer, those in IBC have been few and have enrolled small numbers of patients.  Of the current clinical trials in breast cancer, less than 10% allow participation by women with IBC and none focuses on IBC exclusively.  Even compared to other cancers with a similar incidence, such as metastatic melanoma and Hodgkin's disease, research on IBC is extremely limited.   As a result, the optimal treatments for IBC have not been defined.  Many women with IBC receive bone marrow or peripheral blood stem cell transplantation, a toxic and potentially risky treatment, despite inconclusive results in clinical trials. 

Fundamental questions also remain about the epidemiology of IBC.   It is unknown whether the risk factors for IBC differ from those associated with conventional breast cancer.  A disturbing finding is that survival for African American women with IBC is significantly worse than for whites.  It is not known whether this is due to differences in the disease characteristics or to patterns of medical care.        

            In order to address the virtual "orphan disease" status of IBC and ultimately to improve the state of knowledge about IBC and its treatment, an IBC initiative has been undertaken at Tufts-New England Medical Center (Tufts-NEMC).  Tufts-NEMC is a major tertiary referral center and teaching hospital in downtown Boston, and has been a leading innovator in the breast cancer research and the multidisciplinary care of breast cancer patients.  Over 50 researchers and clinicians at Tufts-NEMC focus on breast cancer treatment, clinical research, and laboratory investigation.  The IBC initiative is led by John K. Erban, MD, Chief of the Division of Hematology and Oncology, Director of the multidisciplinary Breast Health Center at Tufts-NEMC, and a leading breast cancer researcher.

            The activities of the IBC initiative at Tufts-NEMC include:

1.         The systematic review of clinical research on IBC: In a relatively uncommon condition such as IBC, in which only a small number of clinical trials have been performed, clinicians and patients are faced with limited information on which to base critical treatment decisions.  A systematic review of the existing medical literature on IBC is therefore essential, using the rigorous methodology of evidence-based medicine.   Tufts-NEMC researchers are internationally recognized as innovators in evidence-based medicine methodology, including decision analysis and meta-analysis.    Dr. Joseph Lau is the Director of the Tufts-NEMC Evidence-Based Practice Center, one of 12 such centers nationally, funded by a grant from the Agency for Health Care Research and Quality.   Dr. Lau has prepared numerous evidence-based systematic reviews on cancer-related topics.  Dr. Lau, in collaboration with members of the Hematology-Oncology Division, will perform a systematic review of existing research on IBC. The results of this project will provide a comprehensive synthesis of data for clinical decision making and generate hypotheses for future research.

2.          The development of a regional registry of IBC cases:  As noted above, the incidence of IBC appears to be increasing, and it occurs in women younger than those who develop conventional breast cancer.  Survival among African Americans with IBC appears to be worse than in whites.  Little else is known about the risk factors for IBC, its epidemiology, or treatment outcomes (other than in the minority of patients who participate in clinical trials).  Through the extensive network of hospitals in New England that collaborate with Tufts-NEMC in its research efforts, a regional registry of IBC cases will be developed.  Information will be collected on patient demographics and the presence of standard risk factors for breast cancer.  The treatments that patients receive and their responses and outcomes will be tracked.  Long term development may include expansion of the registry to a national level in collaboration with national cancer research groups in which Tufts-NEMC participates, and the development of a tissue bank to collect and store IBC specimens for laboratory research.

3.             Clinical Research Protocols for IBC: Improvements in treatment outcomes for IBC will occur through laboratory research and through rigorous testing of hypotheses in clinical trials.  The small numbers of IBC patients treated at any given research institution have precluded large-scale randomized trials in the past.  Yet such trials have been carried out in other diseases that are relatively uncommon through collaborative efforts among many institutions.  Tufts-NEMC is in an ideal position to spearhead such efforts in IBC, as a main institution of the National Cancer Institute-sponsored Eastern Cooperative Oncology Group.  A working group of leading breast cancer researchers will be convened to develop a national agenda for clinical trials on IBC based on ongoing laboratory research and on hypotheses generated from the systematic  synthesis of clinical data described above.