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Daughter's Handbook

If you are a daughter and have breast cancer...

My name is Lillie. Like you, I play many roles. My roles are wife, mother, daughter, sister, nurse and friend. All women play different roles at different times in their lives. With each role we prepare for what will be expected of us in some general sense, and we also rely on our previous experiences to guide us in fulfilling these many roles. One role we usually do not anticipate and one that we are not prepared to play is that of a woman with breast cancer. However 194,000 women in the United States in the year 2001 will have to fill that role.

If you are one of these women, you are no doubt frightened of what may be lying ahead. First, however, take comfort in knowing that you are not alone in this new role. In 1992 at age 38, I was diagnosed with breast cancer. I am now one of more than two million women who are breast cancer survivors and have successfully fulfilled the expectations that are required to become survivors. You, too, can join these elite ranks. You need to know what to expect and how to cope with cancer, its treatment and your recovery, in order to join this club.

The Mothers Supporting Daughters with Breast Cancer (MSDBC) organization will make available to you a listing of recommended books, pamphlets, support group programs and other information to help you successfully become a breast cancer survivor. This particular pamphlet is written to help you utilize your family and friends as support people for your journey ahead so that you can achieve your goal to be a breast cancer survivor club member.

Most women, I believe, want to help everyone else when they are enduring troubled times. Yet we are slow to ask for help ourselves even when we know that we desperately need it. Though it is a time to be strong when diagnosed with breast cancer, it is not a time to be a martyr and decide that you can handle what is ahead by yourself. Even though you may be able to, there is a time to ask others for support. You need to concentrate your energy and time on getting well and on helping your body respond at its maximum best to whatever treatments are required. You need to help your body and mind achieve a healthy cancer-free condition. Stress is an energy drainer, immune system thief and your enemy at this time. Whatever you can do to reduce stress must be done. But, you think, "Well, just knowing that I have breast cancer is stressful." This is true. All the more reason to call on family and friends to provide you the emotional and physical support you need now and in the near future. Let's begin with your mom...

Internet

If you have access to the Internet through your home computer or your modem at work you may want to tap into the world-wide web. To buy the software for home use you will need a modem. There are many software Internet packages to choose from. All give you access to the Internet, e-mail and also offer other features. The average monthly fee is around $15 to $20. MSDBC has two e-mail addresses: msdbc@dmv.com and lilliepie@aol.com.

msdbc@dmv.com is the headquarters office and personal e-mail of Charmayne Dierker, the president of the organization.

lilliepie@aol.com is responsible for one of the regional offices and is the vice president and a breast cancer survivor as well as the co-founder.

MSDBC also has a website address on the Internet that tells about what we offer and our mission: www.mothersdaughters.org.

There is a support group area on Internet to post and receive messages. It is called the "Cancer Network." Hundreds of breast cancer survivors post messages in this section! This is a site developed in 1999 by the American Cancer Society to provide cancer patients and their families with easy ways to connect with other patients and families like themselves. There is a narrative section to read and an audio section to listen to other cancer survivor stories. Their website address is: www.cancersurvivorsnetwork.org. There you will find many resources available to you and your mother!

Intelihealth is a medical information website whose medical information comes from Johns Hopkins and Harvard faculty. On their home page is an icon for "cancer zone" as well as one for "women's health." Both icons will take you to their breast cancer information section which is packed with good information about breast cancer and its treatment. For women newly diagnosed, there is a special document called Breast Cancer--Making the Right Choices for You, which received a national consumer health information award in 1998 for "Excellence in health information." Take advantage of this document and apply it to your own situation so that you can ensure that you are in good hands for wherever you choose to receive your breast cancer treatment.

You will also find OncoLink in this section which provides a wealth of information for you on breast cancer. "OncoLink was founded in 1994 by Penn cancer specialists with a mission to help cancer patients, families, health care professionals and the general public get accurate cancer-related information at no charge. Recent changes have been made to OncoLink to update the look and feel of our site.

"OncoLink is designed to make it easy for the general public to navigate through the pages to obtain the information that they want. The home page has buttons and hypertext links. If you click on the buttons or the underlined text with your mouse, you will go directly to your area of interest.

"Through OncoLink you can get comprehensive information about specific types of cancer, updates on cancer treatments and news about research advances We update the information every day and provide information at various levels, from introductory to in-depth. If you are interested in learning about cancer, you will benefit from visiting OncoLink."

Other areas in the OncoLink segment where the University of Pennsylvania has carried video and audio portions of conferences held can be seen in the OncoLink TV section.

The Johns Hopkins Breast Center also has a website that will interest women who want more breast cancer information. This site was developed by Lillie Shockney and is updated weekly. It contains information about breast cancer, its diagnosis and treatment, audio tapes of educational seminars held on various topics related to breast cancer and its treatment, as well as a list of upcoming events, an audio tape of Lillie Shockney sharing her own personal experiences with breast cancer and an electronic medical journal called Artemis. This monthly journal, dedicated to breast cancer educational information, is free to subscribers. There is also available from the home page of the website, a quality of care/patient satisfaction survey that Johns Hopkins encourages women to complete no matter where they have received their treatment. This survey tool is tied to a database for the purpose of benchmarking/comparing results with the hope to develop national quality standards for breast cancer diagnosis and treatment in the United States. This website is also the recipient of national awards for excellence in educational information about breast cancer. The address is:
Johns Hopkins Breast Center
601 North Caroline Street, Room 8031-A
Baltimore, MD 21287
Telephone: 410-955-4851

The Johns Hopkins Breast Center has been recognized as one of the top ten breast centers in the world. There is an electronic journal called Artemis on the website as well. It is a free subscription that can be received every month via your e-mail.

You can also view archived issues. It is electronically published monthly and includes the latest cutting edge research information about breast cancer and its treatment.

This NABCO website may be of interest also. At NABCO's Breast Health Post Office send a Breast Health Postcard to Your Favorite Woman! You can help the women in your life (and the men who love them!) to take good care of their breast health by sending them one of our online postcards. Remind them about screening guidelines, tell them about NABCO's Email ReminderSM, give them NABCO's toll-free number, or send a flower with your own special message.

Create your postcard following the steps below, then click send. Your friend will receive an email message telling her to pick up her postcard at the NABCO Post Office (note that messages are kept on hand for three months -- after that, you'll need to mail again!).

Choose and send as many as you like to your mom, your friends and relatives, teachers and colleagues. All messages remain private mail in the NABCO Post Office.

For assistance regarding your cancer chemotherapy have your doctor or social worker call to talk with someone about the Access Program that is sponsored by Bristol-Myers Squibb Oncology. The toll-free number is 1-800-272-4878.

If you would be interested in joining an online breast cancer support group, American Online Breast Cancer Sisters is a very good one. They meet monthly in a chat room on AOL. To participate in the live chat you will need to be an AOL member. If you are not on AOL however, you can still take advantage of this group and the wonderful support they can provide by sending an e-mail to Heather Gilbert at: MsHeatherG@mindspring.com

Questions Women with Breast Cancer Frequently Ask About Health Insurance Benefits

From past experience myself as well as having talked with many breast cancer patients, there are some key questions that arise related to health insurance coverage that might be helpful for you to know. Concerns about what your health insurance does and doesn't cover can add unnecessary anxiety and worry to you at a time that you don't need it. By being proactive you can contact your insurance company and get information up front about what they do and don't cover. This information below will also help advise you how to optimize the coverage you do have.

Will my insurance company cover my mastectomy/ lumpectomy surgery if I am an inpatient?

Most insurance companies, including managed care organizations, will cover an overnight stay. However there has been a trend toward outpatient surgery unless you are having reconstruction done at the same time or you have other medical conditions warranting hospitalization. Depending in what state you live, there might be specific legislature related to ensuring coverage for overnight stays as well. The need to be an inpatient or an ambulatory surgery patient should be decided by you with input from your surgeon. Discuss this with your surgeon first then talk with your insurance company if you are planning to be hospitalized. (Johns Hopkins makes it the patient's choice to be an inpatient or outpatient for mastectomy surgery without reconstruction based on input from her surgeon. We are strong advocates that only hospitals who have developed comprehensive patient education programs which are conducted in advance of the patient's surgery should be performing mastectomies on an outpatient basis. We know from experience however that patients prefer going home the day of surgery ninety-two percent (92%) of the time and do very well. They score us high on patient satisfaction surveys and feel confident that they made the right choice in electing to have their surgery performed on an outpatient basis. It requires a commitment of time, effort, and resources to develop a program that works well however. Not many facilities have invested this time and energy unfortunately. So ask your doctor how many patients have been done on an outpatient basis if he is considering recommending to you to have your surgery done in this way. Pressure from insurance carriers should not dictate whether you are done on an inpatient or outpatient basis. Decisions about this must rest with you and your doctor.)

Most insurance companies will cover reconstruction of all types, but check to see if they place a time limit when you can have it done. There is active legislature now (Sept 1997) which, if passed, will require that all insurance companies cover reconstruction of all types for an unlimited length of time after the initial mastectomy surgery. Presently, there are some insurance companies who require that the reconstruction be done within one year of the initial mastectomy surgery, if it is to be a covered benefit.

I don't know if I want to have reconstruction yet. Will it still be covered if I choose to wait until a later time, or is it only covered if done as part of my breast cancer surgery now? Will my insurance cover any type of reconstruction, such as tram flap, saline implant, or dorsal flap?

Most insurance companies will cover reconstruction of all types, but check to see if they place a time limit when you can have it done. In October 1997 legislation was passed that requires insurance companies to cover reconstruction of all types for an unlimited length of time after the initial mastectomy surgery.

I've decided not to have reconstruction. I'd prefer to wear a breast prosthesis. How expensive are they, and how much will my insurance cover?

This is a tricky question. Breast Prostheses range in price from $50 (made of cloth with tiny pillows for fillers inside) to $1400 (made of silicone and created from a mold of the other breast), with the standard prosthesis costing about $350. Silicone prostheses usually come with a two year warranty. There are also breast prostheses designed for swimming; these range in price from $15 to $40. If an insurance company only covers one prosthesis, make sure you submit the sales receipt of the permanent silicone breast prosthesis to your insurance company, not the receipt of the swimmer's prosthesis or a less expensive model such as the cloth prosthesis. Since the insurance company will only cover one you need to submit the more expensive one to them, otherwise you will be stuck with a large bill and they will have technically paid for a prosthesis even if it is a swimmer's model or cloth model. This can result in serious financial hardship which is avoidable if you know how to submit your insurance bills up front. Also make sure you get a prescription from your surgeon ordering that you be fitted for a breast prosthesis as well as mastectomy bra. Without the prescription you will probably have trouble getting fitted and definitely trouble getting your insurance company to pay the bill. Most insurance companies pay eighty- to 100- percent (80% to 100%) of the bill for prostheses. Some companies are rigid and only cover the purchase of one prosthesis for a lifetime.

This is an important benefit to ask about. Other companies will cover reimbursement for a prosthesis every two years.

What happens if my body changes in size and my prosthesis no longer fits properly? Can I get a replacement, and is it covered by my insurance?

Most insurance companies will cover replacements for this reason, provided there is a prescription from a doctor stating the reason for the replacement.

Can I go anywhere to get a breast prosthesis, or are there only certain locations approved for me to go?

Most insurance companies will let a patient go anywhere she chooses. It is wise to choose a store that employs certified fitters who are specially trained to fit women for breast prostheses. Being fitted for a mastectomy bra and/or breast prosthesis is very intimidating, and can be degrading if not done by a highly professional staff dedicated to making the experience a nonstressful one. Ask the health care professionals if they have a list of stores who they recommend and who have certified fitters there. You will probably find that many of the mastectomy supply shops are owned by women who have had breast cancer themselves. These women have chosen to help others like you and I. These women know how you feel because they've been there themselves...Feel free to ask when you call to make a fitting appointment if any of the fitters are breast cancer survivors.

Are mastectomy bras covered by my insurance, and if so, how many will they cover per year?

There is some variance among insurance companies about this particular benefit. Most insurers will cover two bras a year, provided they are accompanied with a prescription from a doctor. During the month of October, National Breast Cancer Awareness Month, many mastectomy supply shops have sales on their mastectomy supply items. This is especially important if your insurance company doesn't cover reimbursement for mastectomy bras beyond the initial coverage of two bras. Bras are expensive and take advantage of sales! (Mastectomy bathing suits, by the way, are not covered by insurance companies. These items are almost always on sale around Labor Day.)

I've been told I might need chemotherapy. Is it covered by my insurance? What if I choose to participate in a clinical trial? What drugs are and aren't covered?

This varies from company to company. Call and ask them specific questions. It is best to also ask the oncologist if a research grant will cover any drug and treatment costs if you do participate in a clinical trial. There is a positive trend developing now, which is good news, of insurance companies covering health expenses related to clinical trial participation.

I might need radiation therapy. Is this covered by my insurance?

Check to see what sites are covered for radiation therapy. Sometimes patients assume they will receive all medical care at the place they were diagnosed and initially treated, and are later surprised to discover that the site for radiation treatment is in a different location and will be provided by health care professionals who are not part of the patient's original treatment team. If this is the case, you need to know up front to prevent anxiety about it later.

Based on my understanding of the type of chemotherapy I'll be receiving, I might lose my hair. Will my insurance company cover the cost of a wig? How soon can I get one? Does my hair have to be completely gone in order to get one?

Insurance companies do cover this expense up to a maximum of $340. It might require sending a letter to the insurance company from your doctor verifying that you are on medications that cause hair loss. If the wig you are selecting costs more than your coverage allows, you must pay the difference. You can also check with the American Cancer Society who has a wig loan closet, or, check with the Breast Center where you are being treated; they might have access to wigs for you if this is a financial burden for you. There are various organizations and hospitals who have a supply for "recycling" to newly diagnosed patients who are in need of such an item. It is advisable to be fitted for a wig before you begin to lose your hair. This way, the wig will be easily matched to your hair color and hair style.

I've been told that I may need a bone marrow transplant as part of my chemotherapy treatment. Is this covered by my insurance?

Today bone marrow and stem cell transplants are only being done as part of clinical trials. This is an expensive procedure which is showing great promise for helping women beat this disease. Your insurance company may cover part of it or possibly all of it. There is wide variation among insurance carriers about this. Some companies still consider its value as experimental and therefore don't cover it at all. If you are anticipating needing this procedure done check with your insurance company and get information in writing from them about what they do and don't cover related to this specific treatment.

My doctor plans to do my procedure (mastectomy or lumpectomy with axillary node removal) as an outpatient procedure. Arrangements are going to be made by the Breast Center for a home health nurse to come to my home the night of my surgery and the next day. Is this expense covered by insurance?

Most insurance companies do cover home health care following this type of surgery. They usually cover two visits and there must be extenuating medical circumstances to warrant approval of additional visits. There are special forms that the doctor or nurse fill out for the insurance company and for the home health nurse to help assist with ensuring coverage. Insurance companies usually contract with specific home health care agencies too. Ideally the home health nurse caring for you is familiar with out patient mastectomy care. (Johns Hopkins has trained home health care nurses specifically for this purpose to ensure they know what is expected of them when conducting a home health visit. This better ensures continuity of care for you.)

I might be switching insurance companies in the middle of my treatment. Will my new insurance company cover the continuation of my current cancer treatments?

If at all possible it is best not to switch insurance companies in the midst of treatment. There can be serious problems with insurance coverage for continuation of your breast cancer care. If you are leaving your present place of employment you might want to strongly consider continuing your current insurance coverage by paying the monthly premiums yourself at least until your treatments are completed. You should also check with your new insurance company about their policies regarding "pre-existing conditions." Some companies picking you up as a new member will continue your coverage for breast cancer treatment and others may not for a specified period of time.

What can I do to influence changes in insurance coverage if I think that my insurance company is being unreasonable about my treatment benefits?

First talk with the member relations manager for your insurance company to see if you can come to some agreement about what is reasonable coverage and what is not. If you are unsuccessful in getting satisfactory help, you may need your doctor to write a letter on your behalf explaining the medical need for certain treatments and such. If the problem is one related to your insurance company not providing a specific benefit at all or a limited benefit (for example, one prosthesis for a life time) you may want to write to your insurance commissioner or even contact your local congressman or senator who may be able to promote legislation requiring certain types of coverage for all women unrelated to the type of insurance they have.

The Cancer Information Service
By telephone: toll-free 1-800-4-CANCER

This is a division of NCI, National Cancer Institute, which offers free information about cancer diagnosis and treatment as well as a list of cancer centers who offer specific clinical trials depending on the type of cancer you have, its stage and grade of the disease. They will answer your questions on the phone as well as mail you free literature within 24 hours of your call.

These numbers are assessable from 9 a.m. to 10 p.m. Alaska: 1-800-638-6070 on weekdays and from 10 a.m. until 6 p.m. on Sat. Hawaii: 1-800-524-1234

The Cancer Information Service be reached by mail at:
Office of Cancer Communications
National Cancer Institute
Bethesda, Maryland 20692

This organization will provide you information about the newest treatment for breast cancer as well as send you literature in the mail about diagnosis and treatment.

American Cancer Society
1599 Clifton Road NE
Atlanta, GA 30329
1-800-ACS-2345

This organization will send you information on treatment, detection, prevention, as well as local services available in your own area. They offer three (3) specific programs for breast cancer patients.

Dr. Susan Love's Breast Book
by Susan Love, M.D. August 2000

This is an excellent book that includes drawings. Addison Wesley Publishing Company and descriptions of answers to nearly every question a woman or her family may have about breast disease, with a 90 percent focus on breast cancer.

Journey of Hope: Couples Speak Out about Breast Cancer
by Lillie Shockney, RN, BS, MAS

Published by Samsung Telecomunications America and Sprint PCS, 2000

The Informed Woman's Guide To Breast Health
by Kerry Anne McGinn, RN

Bull Publishing Company

Breast Cancer Survivors' Club: A Nurse's Experience
by Lillie Shockney, RN, BS, MAS

Real Health Books 2000, 970-663-0831, Ext. 24

You can also order from a local book store or order online from Amazon (amazon.com) or Barnes & Noble (bn.com). You can also order it from MSDBC to receive an autographed copy.

How can my mother be a support person to me?

Some women have a wonderful relationship with their mothers and confide in them routinely when they are in need of emotional support; others call their mother last when dealing with a situation that is a physical, emotional or financial burden. When you are confronted with a diagnosis of breast cancer in a fundamental way, it doesn't really matter what your past relationship with your mother has been. This disease is going to have a major impact on your mother. She will fear losing you; she will be upset that her "baby" has cancer and will fear that she may also get this disease; or she may feel guilty if she herself is already a "club member." Your mother, being a mother, will need to help you. She just may not know how. One of your jobs is to help her identify ways in which she can help that are constructive and aid in reducing stress, rather than adding stress, for you.

I believe firmly that people do their best in a situation when they have adequate information about what they are dealing with. Therefore, provide your mother with as much other information about your type of breast cancer and the recommended treatment as you feel comfortable doing. Too little information might cause her more worry and to think only negative thoughts. Too little information might also cause her to ask you more questions during times when you don't feel like talking. So share with your mother what you know, then direct her to information about breast cancer so that she can read and understand the terms and treatments. Her first reference material can be the companion pamphlet to this one in which we explain what mothers need to know about their daughters' breast cancer, published by Mothers Supporting Daughters with Breast Cancer (MSDBC).

"Cancer Survivors* Network" is a new site developed in 1999 by the American Cancer Society to provide cancer patients and their families with easy ways to connect with other patients and families like themselves. There is a narrative section to read and an audio section to listen to other cancer survivor stories.

Young Survival Coalition

Our numbers are small, but our battle is real. Any young woman diagnosed with breast cancer is faced with the fact that she is a minority. Outside of the breast cancer community she is a young woman battling a potentially fatal disease that otherwise healthy young women can't begin to comprehend. Inside of the breast cancer community, she is the minority and most of her needs are not the same as her older fellow survivors. Her cancer is usually a more aggressive one. She has not had the same life experience as older women, and therefore her support system is not as solid, and her daily life issues are different.

The majority of the research within the breast cancer community is concentrated around women over the age of 45. Most support groups are attended by women over the age of 45. The legislation around mammograms is focused on women who have Medicare as their primary insurance carrier. It seems that young women are a silent minority overlooked by the breast cancer community, and we wish to give a louder voice to our cause.

We are a group of young survivors trying to bring people together to further the issues and activities surrounding breast cancer in young women. We have defined our mission statement as such:

Mission: Develop a volunteer network of survivors who will bring attention to issues surrounding breast cancer in young women. As a point of contact for breast care activities in the New York Metropolitan area, we seek to focus support and dollars for breast cancer research, technology, education and outreach dedicated to issues surrounding young women and breast cancer.

Campaigns: In order to accomplish our mission, we intend to launch a number of campaigns over the coming months. These include A Young Survival Newsletter included on the website www.youngsurvival.org which discusses issues of young women fighting breast cancer; an awareness campaign for OB/GYNs and breast surgeons to bring to light issues surrounding young women and breast cancer. These issues may include early detection for young women, addressing the specific needs of young women, and post-treatment options. A campaign to raise the number of research studies surrounding young women and breast cancer. These studies should include early diagnosis, cure, treatment options, post-treatment drugs, pregnancy, and childbirth.

The Community Breast Health Project is dedicated to improving the lives of people touched with breast cancer by providing information and functioning as a clearinghouse for information and support. It is grass roots driven. By phone you can reach them by calling: 650-326-6686 or writing them at the following address:
Community Breast Health Project
545 Bryant Street
Palo Alto, CA 94301
Their website address is: www-med.stanford.edu/CBHP/

Above all else, THINK POSITIVE!

If ever there is someone who must remain optimistic, it is you! Breast cancer can be beat! Surgery, radiation and chemotherapy are only a part of the treatment. cancer can be beat! Remember that eighty-five percent (85%) of women diagnosed today with breast cancer will become long-term survivors like me. Surgery, radiation and chemotherapy are only a part of the treatment. Your optimism and unrelentless love is the other part.

Decisions about your treatment options are yours to make based on recommendations from credible physicians that are experts in the field of diagnosing and treating breast cancer. No doubt you will want to discuss the options with your spouse (or significant sweetie), but there is no need for you to feel compelled to ask other family members for their opinions. Their role in your decision-making process is to support your decision... not to make it for you.

Your mother will no doubt be upset when she learns of your diagnosis. This is an opportune time for both of you to have a good cry and probably several cries together. She needs your guidance as to how she can best be of help to you. Below are some suggestions of what you might ask her to do for you. Remember, your mother is a woman. She has the same basic instincts that most women have: to help. Because she is your mother, these instincts are magnified three fold. If you don't identify constructive ways for her to help, she will seek out her own ways, which, in your opinion, may not really be helpful to you. So remove the mystery and let her know what you need! Here are some suggestions:

Ask her to watch the kids while you and your spouse or friend have a quiet time together, perhaps for dinner or even a movie. You're thinking, "Go to a movie?! How can I go to a movie? I have breast cancer!" Well, even though you have breast cancer you still have a life. One of the most valuable things to do is to plan enjoyable activities that will help to reduce your stress. I personally love a movie with lots of comedy in it. You might prefer a heart-wrenching romantic movie. In that way, a good cry can be a helpful emotional outlet for you.

Have your mother chauffeur you back and forth for your treatments if you need follow-up therapy such as radiation or chemotherapy. This time together provides benefits: for example you will be advised that you shouldn't drive yourself for chemotherapy treatments, or after a series of radiation treatments, you may feel too tired to drive. Having a spouse or close friend take off from work to do the chauffeuring is a wonderful thought, but perhaps not practical. After all, when your treatments are all done aren't you going to want to celebrate with a real vacation? So save those vacation days for more serious health visits such as follow-up check-ups with your doctors, for real vacations, and for that dreamed of cruise to the Islands!

Ask your mother to pick up nightgowns that are "one size fits all" for you to wear after surgery. They should have a large opening for your head and armholes. She will feel good about getting them for you and you will appreciate how versatile they are to wear during your post-operative period. They nicely accommodate any drainage tubes that you may have.

Consider having your mom be the person to change your dressings and empty your drain devices. Most women do go home with at least one and sometimes two drainage tubes in the incision. Drainage tubes are too awkward and emotionally challenging for you to manage yourself. Also you may not feel comfortable having your spouse handle them. A mother's touch can be the perfect thing. If so, plan to have your mom either come to the hospital the morning of your discharge or request a Home Health care nurse to come to your home the first day. A nurse will show your mother the procedure for emptying and recording the amount in the drainage devises.

Ask your mother to provide information to other family members about your progress. This will keep the phone from ringing off the hook at your home and will provide an efficient way for all necessary family and friends to be informed on a regular basis.

Your mom is going to want to know how you are feeling, physically and emotionally. Many mothers can read their children's faces or telephone voices like a book, so don't try to hide your feelings from her. If you open up, so will she. You will find that breast cancer binds women together--especially mothers and daughters. Recognize that and use the bond to your advantage at this time. This experience can bring you closer to your mother if you wish for that outcome. She needs you and you need her right now. No matter what kind of relationship you have experienced before, this is an opportunity to form new bonds with your mother.

Love,
Lillie D. Shockney

A Message from MSDBC about Emotional Needs of Women with Breast Cancer

  1. A woman's highest anxiety level is usually between the time a breast health problem is identified and the time of confirmation of diagnosis. This is due to fear of the unknown. Physicians should do whatever they can to shorten that window of time.
  2. A woman feels she has lost control of her life when informed she has breast cancer. In addition, family members feel they too have lost control. A mother, or other family member, may feel responsible. We must empower the patient and her family to help them regain a sense of control. Educating the patient and her family who will be directly involved with her care and treatment is a positive way to empower patients and enable them to participate in the decision making about her care and treatment options.
  3. It can be hard for doctors to address the emotional needs of their patients. Doctors function as the "captain of the ship" yet may leave out an essential component of care--the emotional needs of the woman and her family. If they are unable to meet these emotional needs they must have resources immediately available as a part of the health care team taking care of the patient. One of these individuals can be a trained breast cancer survivor.
  4. Every patient must have a "care partner." This partner is a family member--band, boyfriend, mother, sister or other close person. This individual needs emotional support as well.
  5. Post-treatment syndrome must be a new priority. After the intensity of treatment, a woman is never the same as before, though she and other people expect her to be. There is constant fear that the cancer will return, manifesting itself as aches and pains that previous to having breast cancer would have been shrugged off as merely a minor problem. The patient, her mother and other family members are caught up in this fear. The primary care physician is called on to alleviate these fears, thus driving up health care costs. A "weaning" plan is needed after the intensity of the treatment is officially completed. Seeing the patients at six-week- then three-month- then six-month-intervals by a nurse practitioner can help fulfill this need and reduce anxiety. Encouraging patients to continue to talk about their feelings is important too. Support groups with an effective facilitator can serve this need in many cases or one-on-one counseling.

ATTITUDE ON LIFE

The longer I live, the more I realize the impact of attitude on life. Attitude is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company, a church, a home. The remarkable thing is that we have a choice every day regarding the attitude we will embrace for that day. We cannot change the past. We cannot change the fact that people will act a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10 percent what happens to me and 90 percent how I react to it. And so it is with you. We are in charge of our attitudes. --Charles Swindoll in The Newsletter

Prepared and distributed by: MSDBC Mothers Supporting Daughters with Breast Cancer. For more information, contact: www.mothersdaughters.org

MSDBC
c/o Charmayne S. Dierker
21710 Bayshore Road
Chestertown, MD 21620-4401
Phone: (410) 778-1982
FAX (410) 778-1411
e-mail: msdbc@dmv.com

MSDBC
c/o Lillie Shockney
307 Bond Avenue
Reisterstown, MD 21136-1405
Phone: (410) 833-1837
e-mail: lilliepie@aol.com





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