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Exciting Plans For 1997!

A lot of us think about making changes and improvements when a new year begins -- the Breast Cancer Coalition of North Carolina is no exception. At our strategic planning meeting in January, we discussed the goals for our organization and began planning how we would accomplish them. We are very enthusiastic about what lies ahead and invite you to participate. We offer you a chance to "make a difference" in the way and to the degree that suits YOU best. In this issue of Staying Abreast you will find many ways to move ahead in the effort to eradicate breast cancer.

Whether your area of breast cancer interest or expertise lies in "spreading the word" (Public Relations) or connecting with other people (Communications), we have a way for you to help. If learning or telling others about this disease (Education) is your cup of tea, join us so we can expand our efforts. If representing the patient's point of view with decision-makers is what you would like to do (Advocacy), let us know. If changing or influencing the creation of laws about health care, insurance, etc. (Legislation) is what you are interested in, let us help you get keyed in to the right people. If you would like to interact with others in your community with similar breast cancer interests (Geographic Organization), we can connect you. If you have a "Midas touch" or a flair for finance, we need your ideas.

Whatever your interest and level of commitment, we need you to make BCCNC better. Call 800/419-5481 right now and help us as this year's plans become this year's activities. Here are some of the things we have going on right now:

BCCNC 800 Number

Julie Christopher is now taking messages off the 800 line and needs to know who would like to help with follow-up calls. We get calls on topics such as: information on BCCNC, statistics on breast cancer, or "I just found out I have breast cancer and live in …". Call our 800 number and let us know you can help!

Workshop on Wellness

Jamie Konarski is organizing our annual workshop. Two speakers are already confirmed. This year we will hold a "Celebrate Today" Reception on Friday with the workshop on Saturday. Plans also include exhibitors at the reception! This is a huge effort and Jamie is looking for help. Two areas with immediate needs are: 1) locating & contacting potential sponsors/exhibitors, and 2) coordinating exhibitors. Please call Jamie at 919/758-1161 if you are interested.

Internet

Linda Brown is leading the effort to get us online! BCCNC is developing a World Wide Web site. We also need to let existing breast cancer-related sites know about us! If you are "net savvy" & want to help, please call!

Newsletter

Linda Hendry is always looking for information, articles or suggestions to add to the next quarterly newsletter. We also need help getting the newsletters ready to mail (fold, stamp, label) – this can be a fun group activity! Please call if you want to pitch in.

Resource Directory

Jamie Konarski is continuing the process of gathering & coordinating information from various sources throughout the state for our Resource Directory. She needs more information on breast cancer-related resources in rural northwestern & southeastern counties as well as the Triangle area. If you know of resources in these areas, please send it to us for our directory!

Public Relations

Jan Hartlaub is leading the effort to increase awareness of BCCNC throughout the state. One way you can help is by notifying us of breast cancer-related events going on in your area so we can out send press releases. Also, we need lists of newspapers, radio & television stations (with contact names) in your communities so they can be informed of BCCNC activities. Any suggestions, help or information would be great!

Public Education

Catherine Andrews is putting together a Speakers Bureau including people throughout the state who are interested in giving talks on breast cancer issues to groups. Please call or write if you are interested and include breast cancer topics you are willing to speak about.

Professional Education

Sue Moore is coordinating the effort to help keep medical professionals aware of issues related to breast cancer. This is a huge effort, and Sue could use help from others throughout the state.

Organization & Membership

Dana Litaker is leading an effort to increase breast cancer awareness and member participation by creating local chapters of BCCNC. Piedmont Chapter, our first local, has organized and will spearhead BCCNC activities in Greensboro-Burlington-High Point. Other areas under consideration include Forsyth County, Wilmington, Rocky Mount and Wilson. If you have ideas on how to increase membership and participation in BCCNC activities, or would like to form a local chapter in your area, let us know.

Finance & Fundraising

Marcia Reinholtz is heading this effort and is gathering ideas for an annual BCCNC "signature" fundraiser -- something along the lines of "Dining with Friends" for AIDS, where people invite friends to their home for dinner with the expectation that they will contribute to the cause. Other ideas & people willing to explore possibilities are welcome!

Patient Advocacy In Research

Barbara Parker is coordinating the Patient Advocates in Research (PAIR) program. So far, advocates have been connected with Duke and UNC-Chapel Hill SPORE projects. Let us know if you are interested in becoming a patient advocate.

Environmental Action

Lee Gardener & Cynthia Walker are investigating issues relating to the environment and breast cancer. (See Environmental Alert). Call Lee at 919/233-6913 if you’re interested or for more information.

Legislation & Policy

Emma Lu Bullard is our link to the state and national legislative issues relating to breast cancer. For example, a bill is being introduced in the NC Senate to prevent discrimination based on genetic test results. We will be giving support when the measure reaches the House. For more information or to get involved in other legislative actions, contact us & we’ll put you in touch with Emma Lu.

Annual NBCC Advocacy Conference, Lobby Day & Rally

On May 4-6 the National Breast Cancer Coalition will hold their annual Advocacy Training Conference in Washington, DC, where hundreds of breast cancer advocates from across the country gather to share information, learn the latest in breast cancer research & policy, and enrich their breast cancer advocacy skills. Other events include Lobby Day (when advocates meet with their Senators & Representatives), a Congressional Awards Ceremony, and a rally at which the President & Congress will be presented with the 2.6 million petition signatures from Campaign 2.6.

Details: Conference registration is $75 ($85 after 4/2). Rooms at the Americana are $35/night double occupancy. Meals are extra. Let Emma Lu Bullard know ASAP if you plan to go. She will coordinate carpooling and make other necessary arrangements. Call Emma Lu at 919/243-4098.

New Piedmont Chapter

The Piedmont Chapter (Burlington, Greensboro, High Point, Mebane & surrounding areas) has organized and will spearhead or participate in BCCNC activities at a local level. Projects already in progress include A Woman’s Day on April 11-12, Women’s Only Run on May 3, Triad Breast Cancer Benefit on May 10.

Meetings are held the 3rd Saturday of each month from 10-12. Call Dana Litaker at 910/548-3436 if you would like to know more!

Wanted: BCCNC Secretary

We are looking for a volunteer to be Secretary for BCCNC. This involves preparing minutes from quarterly meetings and writing various routine letters throughout the year. Our elected Secretary needed to resign, and Louise Bland is filling in. Please call our 800 number if you’re interested!

Soy For Women With Breast Cancer

By Dr. Susan Delaney

It is through research in epidemiology that medicine has begun to examine the beneficial effects of dietary soy in the prevention of cancer, especially cancer of the breast. Dr. Cathy Read in her book, Preventing Breast Cancer, The Politics Of An Epidemic, states "the scientific evidence suggests the protective effect of a diet high in soy proteins may at least partly explain the low rates of breast cancer in China and Japan". It is also noted that when Japanese women move to this country and consume the Western diet, their rates of breast cancer increase, becoming similar to the rates of cancer among American women eating the Western meat-based diet. Evidence that diet may significantly contribute to this change is found in a study done by Lee et al., 1991. In this study he assessed the diets of 200 women with breast cancer and 420 women without breast cancer. It was found that women with the highest intake of soy foods had less than half the risk of breast cancer development as compared with those who had a low intake of soy foods. This study shows an increase in the prevalence of breast cancer with a diet low in soy and high in animal proteins. Dr. Barns of the University of Alabama showed that adding a modest amount of soybeans to the diet of rats reduced the incidence of breast cancer by 50%. In animal studies it has been shown that animals given a soy-based diet have substantially fewer breast tumors compared to those on a control diet which does not contain isoflavones from soy.

So what is an isoflavone? It is one of the anti-carcinogenic agents found in soy products, according to Dr. Mark Messina, who presented overwhelming evidence to its effect at the National Cancer Institute in Washington in 1990. Isoflavones are biological compounds that comprise a category of a larger class of compounds known as phytoestrogens. Phytoestrogens are compounds of plant origin that have effects similar to the female hormone estrogen. What is of interest is how these compounds effect the body. Phytoestrogens are of concern to some physicians because they contain estrogen-like compounds. For women who have breast cancer, this concern is particularly heightened.

Though isoflavones have a chemical structure similar to that of naturally-occurring estrogens, they are very weak in their estrogenic effects. Research by Dr. Messina has shown that compared to synthetic compounds, the estrogenic effect of phytoestrogens is one hundred times less potent. Plant estrogens, however, are capable of binding to estrogen receptor sites of the cell, thereby preventing the cell from binding with and responding to stronger estrogen compounds.

This was shown to be true in a study by Setchell et al., in 1984. In this study soy isoflavones were given to study subjects along with synthetic estrogenic compounds. The normal effect of the estrogenic compounds was significantly reduced when given along with soy isoflavones and related compounds. It appears that the phytoestrogens bind to the estrogen receptors on the cell, preventing the synthetic estrogens from binding to the receptors and exerting their effect upon the cell. By this mechanism of receptor binding, isoflavones in soy reduce the overall effect of estrogen on tissues and effectively act as a partial or complete antagonist to estrogen. It is this effect that may result in the reduction of breast cancer in the Chinese and Japanese women who eat a soy-rich diet.

Isoflavones possess other beneficial properties which may also contribute to the anti-carcinogenic effects seen in people eating a soy-based diet. Genistein and daidzein are two components that show other positive anti-cancer effects. A study done by Fotsis et al., 1993, shows that genistein appears to block the process known as angiogenesis (new blood growth), a requirement for tumors to grow. Flavinoids in soy show multiple effects in the body. In the prevention of cancer they act as potent anti-oxidants, free-radical scavengers, and metal chelators (Kandaswami & Middleton, 1994).

As yet, there are no studies showing that the intake of soy products will prevent the recurrence of breast cancer, though the evidence for initial prevention of breast cancer by eating a soy-based diet is substantial. Using the model of cardiovascular disease, it has long been known that reducing fat and increasing fiber, fruits and vegetables will prevent a heart attack. It is now known that once you have cardiovascular disease, these same recommendations will not only decrease chances of a recurrence, but will actually reverse the damaging changes seen in cardiovascular disease. Similarly, preventative diet, exercise and vitamin supplementation for osteoporosis also effectively treat the syndrome. Though the data is not yet available to confirm soy as a treatment for breast cancer, it is absolutely one of the dietary cornerstones of treatment that I recommend for women living with breast cancer.

Along with adding soy to the diet, I also recommend reducing the intake of protein from animal sources. A vegetarian diet is the best, but for meat lovers I suggest a gradual reduction of meat products to not more than four ounces a day (including fish and chicken). The next phase is to reduce meat intake to three times a week. Plant sources, primarily beans and soy, can be used to provide adequate daily protein. Other suggestions include lowering fat intake to less than 20% of the daily diet, which is no easy task. That completely excludes Ben & Jerry! Pizza should be considered a rare treat, if consumed at all.

Whole grains are extremely important. Pasta does not count! Oatmeal, rice, millet and wheat berries (to name a few) are excellent and provide good sources of protein as well. Fiber has also been shown to reduce the levels of estrogens in the body by preventing their re-absorption and encouraging their elimination in the stool. Beans and legumes are also excellent sources of fiber and many, like soybeans, contain isoflavones as well. A serving of each of these is essential every day. Five fruits and vegetables a day are considered minimal, including 2 fruits and 3 vegetables, one of which should be green & leafy.

Exercise is essential and has been shown to lower estrogen levels in women. A study done in 1994 of pre-menopausal women showed that those who exercised four hours a week had a 60% lower rate of breast cancer than women who did not (Family Practice News, Nov. 1994). That translates to 35 minutes a day and should be possible for most women. If not, we need to reexamine our lives and wonder why! Reducing alcohol intake to less than three drinks a week has also shown to be helpful as well. For women with breast cancer, total avoidance or special occasion use is preferable.

The approach for preventing the recurrence of breast cancer is multifaceted, including psychological and emotional support. Diet is a cornerstone of the treatment and cannot be overlooked. Surgery, chemotherapy and radiation may deal with the local effects of the imbalance. But cancer is truly a disease of the immune system which has been ineffective in maintaining order in the body. A whole system approach is advised.

For those unfamiliar with eating soy, I suggest that you start with soy milk. Any health food store should have it. Put a tablespoon of flax seeds and 10-15 almonds in a blender. Grind them up until they appear the consistency of cornmeal. Add a banana, apple or any fruit you have in season. Top with 8 ounces of soy milk and you have a very healthy and quick breakfast! Add honey or vanilla for additional flavors.

Next, try baking tofu. First, marinate overnight or longer in soy sauce, lemon juice, rice vinegar (available at Oriental markets) and grated fresh ginger (about 1 teaspoon). I really can’t give you exact amounts, so play around with the ingredients. I love mine very gingery! Bake it for 35-45 minutes in a baking dish at 350°. Cool and eat it with your rice and vegetables or put it between two slices of bread with lettuce, mustard, onions, or whatever you like. Makes a great sandwich! Soy can be really delicious! Explore the many cookbooks out there incorporating soy. You will grow to enjoy it, and the health benefits are enormous.

In closing, I would like to recommend a soy-based diet to any woman confronted with breast cancer in her life. Conventional medicine has begun to consider diet and nutrition as part of a way to prevent disease. The evidence clearly shows reduced rates of breast cancer among women eating a soy-based diet. Soon research will likely show its benefits as a adjunctive therapy in the treatment of cancer. Until then, keep eating your soy!

Dr. Susan Delaney is a Naturopathic Physician practicing at the Wellness Alliance in Carrboro, NC.

BCCNC To Sponsor Marcia Wallace at "A Woman’s Day"

The second annual "A Woman’s Day" Conference & Exposition will be held at the Koury Convention Center in Greensboro on April 11-12. This event focuses on women’s personal and professional concerns and will feature national speakers such as Carole Simpson of ABC News, Deborah Norville, and Ellen Fein & Sherry Schneider, authors of "The Rules: Time Tested Secrets for Capturing the Heart of Mr. Right".

BCCNC is proud to sponsor speaker Marcia Wallace, comedian and actress. Known as Carol, the witty receptionist from "The Bob Newhart Show", Marcia is also a breast cancer survivor. In her presentation "A Voice of Hope: Marcia Wallace Fights Back", Marcia inspires and invokes thoughts about the implications of being diagnosed with breast cancer.

Also, BCCNC’s Dana Litaker will give a 30-minute talk on breast cancer, and several members will model in a breast cancer survivor fashion show. The BCCNC display booth will be available throughout the two-day conference and will feature Beth Walker’s popular computerized Cancer Risk Assessment. We need help with the booth on Friday & Saturday. Contact BCCNC or Catherine Andrews if you want to help.

North Carolina Triangle
Race For The CureÒ

The first NC Triangle Race For The Cure will be held June 7 at Meredith College in Raleigh. This is a national series of 5k runs/walks to fund breast cancer research, education, screening & treatment. This year, 78 races are planned across the country, including Raleigh and Charlotte (October 4). The Triangle race is looking for volunteers. So, if you’re interested in helping, contact Susan Turner, Coordinator of Volunteers, at 919/846-3545.

 

Environmental Action Alert

Medical waste incinerators have been identified as a top source of the highly carcinogenic environmental contaminant dioxin, which is 300,000 times more carcinogenic than DDT! According to the EPA, burning of certain plastics can produce dioxins which can damage our reproductive and immune systems and developmental systems of children. Some hospitals burn dioxin producing plastics on-site while others transport to incineration sites.

BCCNC is working to encourage hospitals to act responsibly in their use and disposal of plastics. To do this, we are suggesting an "Adopt-a-Hospital" approach for BCCNC members to use in their communities. Here are suggested action plan steps:

Call or write at least one local hospital & ask for written information on their waste management practices.

Advise them that BCCNC is preparing a "Hospital Honor Roll", and you want them become on it.

Ask them if they currently incinerate PCV-type plastics. If so, ask if they know about alternatives to incineration or options for using non-chlorinated plastics.

Have them contact Forsyth Hospital in Winston-Salem to learn about its use of money-saving, on-site microwaving that inhibits the production of dioxins. (For further support, call 919/490-0747 for "Adopt-A-Hospital" materials from NC-Warn)

Have them call Brian Maser of McGaw, Inc., for information on price competitive non-PVC IV bags (800/355-7744, ext. 4077)

Send copies of written materials you receive, your comments, questions & suggestions to BCCNC.

At least once a season, follow up with your hospitals until your hospital is determined to be eligible for BCCNC’s "Honor Roll"

 

Zeta Tau Alpha Alumni & Applebee’s Help in Wilmington

Zeta Tau Alpha Alumni & Applebee’s of Wilmington are again working together to help support BCCNC. On April 1st from 5-9pm, 10% of all checks from dinner will be donated to BCCNC.

Zeta Tau Alpha Alumni will also sponsor the Third Annual Dinner Theater in Wilmington to increase awareness of breast cancer. The event will be held in October for breast cancer awareness.

Lymphedema
By Jan Hartlaub

Here are some questions that seem to come up whenever breast cancer survivors who have developed lymphedema come together and talk about their experiences with this condition: When did you notice that the arm on the side of your mastectomy was swollen? When you saw your doctor, what did he/she say about the swelling? Did you see your surgeon, oncologist, gynecologist or family practitioner? Were you told about your chances of developing lymphedema when discussing breast cancer surgery with your health professionals?

In February, the Greensboro Lymphedema Support Group was formed for people with lymphedema or those interested in learning more about this condition. As members shared their stories, they realized that they had learned a lot about lymphedema through experience, but still needed to know much more. Because of this, they are asking others diagnosed with lymphedema, or those who suspect they may have developed lymphedema, to share information with them. The group wants to share the compiled information with medical professionals to ask for help in (1) trying to decrease the incidence of lymphedema following surgery, and (2) diagnosing and treating lymphedema if it develops independently as a primary condition.

The women who had lymphedema following breast surgery all indicated they felt more threatened by the lymphedema than they did the breast cancer. It is not difficult to hide the scars from cancer surgery, but it is hard to hide lymphedema. When one arm is larger than the other, lymphedema sufferers must wear a compression sleeve that is ugly and hot. They say that in the winter the compression sleeve can be hidden under blouses and sweaters, but in the summer there is no hiding it. "You wear the sleeve, or you have one arm larger than the other," one school teacher said. She added, "My students like to laugh at me when they notice the difference in my arms." Additionally, when the sleeve is removed, many women wrap their affected limbs each night before going to bed. There can be as many as seven layers to a wrap, and the process can take up to 30 minutes.

Oh yes, lymphedema affects legs as well as arms. If lymphedema of the legs goes untreated, it can develop into elephantiasis. When lymphedema develops after surgery or radiation, it is termed "secondary"; but it can also develop in many people for no apparent reason and is then classified as a "primary" condition. There are treatments available however they are only concerned with lowering the swelling and do not address the cause or cure. Currently, the most popular treatment is a combination of massage from a physical therapist, nightly wrapping of the affected limbs, and wearing a compression sleeve. Compression pumps are also available and are recommended by many doctors; however, pumping has recently become controversial, and more information is needed before a consensus on its effectiveness is reached. There are clinics in Charlotte, Asheville, Raleigh and Duke Medical Center which utilize the above treatments.

The Greensboro Lymphedema Support Group would like to hear from other lymphedema sufferers & support groups. We would also like to know about any clinics treating lymphedema. Call Jan Hartlaub at 910/869-2687, or write to BCCNC & we’ll forward it to Jan (please indicate that it is related to lymphedema).

NC HMOs Support Physician-Patient Decisions on Mastectomies

According to a March 12, 1997 PR Newswire article, the North Carolina HMO Association endorsed a bill that leaves the length of hospital stay following a mastectomy up to the patient and physician. "HMOs in North Carolina believe that women who’ve experienced the trauma of breast cancer – along with their physicians – are best qualified to decide how long they should remain hospitalized after a mastectomy," said Paul Mahoney, Executive Director of the NC HMO Association.

PET Imaging Research At Duke

A new clinical research study at Duke Comprehensive Cancer Center is using a computer-imaging technique, PET (positron emission tomography), to determine if breast cancer has spread to surrounding lymph nodes. According to Dr. R. Edward Coleman, "Our goal is to do a simple PET procedure rather than invasive surgery." The 5-year study is funded by NCI.

Source: Duke Comprehensive Cancer Center Notes, Fall 1996

New BCCNC Display Unit

BCCNC has a new display unit that is larger, more portable and more flexible. It will enable us to provide a presence at a variety of conferences, health fairs and other events throughout the state.

Special thanks to Zeta Tau Alpha Alumni and the Donna Cederburg Memorial Fund for donations towards this new unit.

Who Will Tell The People?

The League of Women Voters is sponsoring a Citizens’ Conference on Saturday, April 26, at the McKimmon Center at NCSU. Conference topics include Health Care Reform and Environmental Cancers. The keynote speaker is William Greider, author of Who Will Tell The People. Additional speakers from Duke, UNC-CH, NC Dept of Agriculture and NC Dept of the Environment. Cost is $20 (includes lunch and reception). Registration is suggested since space is limited. Call 919/783-5995 or 800/851-VOTE.

Workshop on Wellness, Sept. 19-20

Hold this date! Plans are well underway for BCCNC’s annual "Workshop on Wellness". This year, we will add a "Celebrate Today" Reception on Friday evening with the Workshop on Saturday. Jamie is looking for help so call 919/758-1161 if you’re interested.

You Can Help . . .

As you can see by this newsletter, we have many plans for 1997. We appreciate your support in the past and hope you will join us again this year so we can continue our work in North Carolina.

If you have not already renewed your annual membership for 1997 (check your mailing label for "exp"), please take a minute and fill out this form.

If you want to join BCCNC and participate in our fight to eradicate breast cancer, please fill out this form & send it to the address below.

We are excited about our plans and we want to accomplish what we’ve set out to do this year! To make us really successful, we need YOUR support and participation!

 Together we can make a difference!