On October 27 the third annual Barbara J. Johnson Memorial Seminar was held at the Great Neck-Port Washington Elks Hall. These talks were initiated by Barbara Johnson in 1997 with the aim of educating women and their families about the latest advances in breast cancer diagnosis and treatment. Johnson died in 2000 after a 14-year battle with breast cancer but the seminars continue, co-sponsored by her son, County Legislator Craig Johnson and his father, Stuart Johnson. This year's guest speakers were Dr. George Raptis and Andrea Geduld, ACSW, both of Mount Sinai School of Medicine. Dr. Raptis is head of the Clinical Breast Cancer Program and oncology associate at the Derald H. Ruttenberg Cancer Center and Geduld is director of the Breast Health Resource Program, which in addition to its existing patients each year helps 500 new patients and their families cope with the breast cancer diagnosis.
Geduld, who has been with the Clinical Breast Cancer Program since its inception in 1987 introduced herself by saying, "I deal with the human side of breast cancer diagnosis." She said it is very important for people who have received traumatic news to be able to talk about it but that often a person with breast cancer is afraid to burden others with her fears and family members are so overwhelmed they don't know what to say. Talking can help de-mystify basic issues such as "what will I look like with no hair?" and "what's it like to have reconstructive surgery?" Geduld asked the audience to say what they found most frightening about breast cancer and many nodded as one woman said the hardest part was "waking up every day and the first thing I think about is that I have breast cancer." Another said "I don't want to talk to my family about it because I know it hurts them." Geduld described breast cancer as the Sword of Damocles, saying whichever way you turn it is there. But, she said, as time passes and with each success it slowly moves to the side and becomes more of a periphery. Craig Johnson added that the sword analogy is also true for family members remembering the pain he felt at his mother's first diagnosis. The pain receded with time he said but it always hovered at the edges to come back when the prognosis was bad.
Johnson asked Geduld how to broach the subject of breast cancer with children especially as today more women are being diagnosed with the disease in their 30s. Geduld said even young children will sense something is wrong and advised laying out the basic facts as honestly as possible without burdening a child. She said many women don't want to tell others they have breast cancer but it is important to tell a child's teachers because it is common for children to show behavioral changes and these need to be dealt with in context. For teenage girls who are adjusting to their own body changes, Geduld said it is essential to ensure they receive reliable information and know what their health risks are so that later in life they follow preventative and diagnostic guidelines.
At this point Dr. George Raptis joined the seminar and began by talking about some recent reports that have questioned the long-considered benefits of mammograms and self-examinations. He believes these reports were based on poorly constructed trials and said he still maintains that mammograms save lives. He suggests people look instead to the SEER Database, the Surveillance, Epidemiology, and End Results Program of the National Cancer Institute. This comprehensive registry of cancer incidence and survival in the United States shows that today the number of deaths attributable to breast cancer is decreasing. This supports the use of mammography and self-examinations because he said the ability for earlier diagnosis, combined with improving treatment, is saving lives.
Raptis talked about recent developments in breast cancer diagnosis and said digital mammograms are an important breakthrough even though at present they can only be used on small non-dense breasts. He said the computerized images can be revolved in many directions allowing better views of the breast and they are easier to store, which will eventually reduce costs. As the technology evolves Raptis believes digital mammograms will become available for all women. Raptis said it is important to be selective when choosing a mammogram clinic because mammograms show black, white and gray areas and some radiologists read these nuances better than others. He suggested asking a clinic how many radiologists they have, how many readings each does - he would hope for 1,000 a year minimum - and to speak to doctors, friends and breast cancer organizations to get recommendations. If anyone is unhappy at what they are told they should ask for their mammogram images and seek a second opinion. Geduld added that there are laws requiring radiologists to follow up on all abnormal findings but New York State currently has 500 less radiologists than are needed. Raptis said women should have a baseline mammogram at 35 - 40 years of age, and as of 50 years women should have a mammogram every year. A person at increased risk should start this process 10 years earlier but not before 25 years of age, and not more than one a year.
Raptis is very concerned when for the first time a mammogram shows a mass but the woman is told not to worry about it. He said that there are certain types of breast cancer that are very difficult to detect with a mammogram but may be seen using a sonogram or an MRI. He said women, especially those who are high risk or with denser or non-fibrocystic breasts "must get pushy if told to do nothing," because in these cases a sonogram and even a biopsy are indicated. Raptis said while sonograms are not necessary for every routine checkup they are an important tool for high risk cases including those with a first level relative with breast cancer, an instance of breast cancer in the other breast, early menopause and those with denser breasts. Another concern of Raptis is the use of HRT and ideally he would prefer "no women to be on HRT" especially since it has recently been shown to increase the risk of a heart attack. He said HRT is used to treat the symptoms of menopause and for most of these such as osteoporosis and hot flushes there are alternative treatments available. For the few women whose extreme symptoms make their quality of life so poor they are barely functioning Raptis does prescribe HRT but for as short a time as possible. Raptis does not advocate nutritional supplements because he said if it could be proved they did any good the pharmaceutical companies would have marketed them by now. He said "It is corporate responsibility if you give something to someone that it be tested and prove the good it can do. This is not done with nutritional supplements."
Raptis talked extensively about tamoxifen, a preventative drug that works by blocking the signaling of cancer cells to estrogen. In a study of tamoxifen versus a placebo the tamoxifen group were found to have 50% less chance of developing breast cancer. The side effects of this drug are a relatively small increase in risk of heart failure, ovarian cancer, blood clots and the speeding up of the onset of cataracts by three to four years. It can also cause hot flushes, a symptom Geduld describes as being "thermally challenged." Raptis said when choosing a treatment he considers as much scientific data as possible but with preventative drugs that have potential side effects the choice is often driven by an individual's concept of risk and benefit. Many women who do chose tamoxifen are distressed to find they can only take the drug for five years. Raptis said the time limit is based on the findings of two large studies, one that showed no benefit for those taking tamoxifen for more than five years and the other that showed an increased risk because continued exposure to tamoxifen eventually makes the cells resistant to and even dependent on it. However the benefits of tamoxifen last up to 10 years after treatment is stopped and studies, only now reaching the 20-year mark, suggest the benefits extend beyond this. Raptis warns that tamoxifen was initially marketed as a fertility drug but found to cause a small number of birth defects so women on tamoxifen must take precautions against pregnancy.
The seminar was a lively two-hour debate fueled by questions from the audience and providing an amazing amount of detailed, potentially life-saving information. Looking to the future Raptis believes that in his lifetime we will have genome sequencing we can put on a card and take to the doctor's office to look at what's available and what the risks are. But, he said, it still won't be straightforward and there will still be difficult decisions to make. He said "I am optimistic and believe that by the end of the coming decade we will prevent more types of cancer; will see women with metastatic diseases living longer and some even cured." Of the event he said, "Barbara Johnson was a great person and a dear friend and I still miss her. She started a small activity, getting people together to learn about breast cancer and the choices we have and that has continued beyond her lifetime and reaches out to so many." The final word went to Craig Johnson who thanked everyone for attending and asked that they "send a message to your neighbors, your friends and your loved ones that there is hope and a cure is on the horizon."