When a mother learns that her daughter has breast cancer, one of the first things she might do is become more knowledgeable about the disease. There are many sources of information that can be helpful:
When a mother learns that her daughter has breast cancer, one of the first things she might do is become more knowledgeable about the disease. There are many sources of information that can be helpful:
The Cancer Information Service
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.
By telephone: toll-free 1-800-4-CANCER
These numbers are accessible 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 Center can 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
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.
There is a wide variety of educational booklets and pamphlets that can be procured from The American Cancer Society. Among them are:
There are many others.
Dr. Susan Love's Breast Book
by Susan Love, MD 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.
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 970-663-0831, Ext. 24
Journey of Hope: Couples Speak Out about Breast Cancer
by Lillie Shockney, RN, BS, MAS
Published by Samsung Telecomunications America and Sprint PCS, 2000
Living Beyond Breast Cancer: A Survivor's Guide for When Treatment Ends and the Rest of your Life Begins
by Marisa C. Weiss, MD and Ellen Weiss
Published by New York: Times Books, 1998
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:
This 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 on the Internet that tell what we offer, our goals and objectives, our mission, a map of the United States showing where we have our mother volunteers, a bulletin board for posting messages and an electronic newsletter.
You will also find OncoLink on the Internet 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 at OncoLink TV.
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. The address is:
Johns Hopkins Breast Center
601 North Caroline Street
Baltimore, MD 21287
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.
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
They also can be contacted by FAX at (650) 326-6673
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.
Access to Clinical Trials: There is a Clinical Studies Support Center (CSSC) at the National Cancer Institute (NCI). Patients can now call directly to the CSSC at 1-888-NCI-1937 from 9:00 a.m. to 5:00 p.m., Monday through Friday, to find out if they might qualify for any of the more than 150 cancer clinical trials NCI is now conducting. If, after a screening appointment, a patient does qualify for a clinical trial and decided to enroll, NCI will pay for travel costs and medical expenses involved with the clinical trials.
Patients can also find online a listing of all clinical trials taking place at National Institute of Health.For a global search for clinical trials, try this website cnetdb.nci.nih.gov/trialsrch.shtml
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:
America Online has abreast cancer support group. Go to Health Forum, choose men/ women/ children's health, then choose support groups. Within the support groups section you will see "breast cancer support." You can post messages in this section and receive responses by private e-mail (if requested) or public e-mail.
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.)
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. 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 one hundred 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, so 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?
All insurance companies now cover at least two (2) home health care visits following this type of surgery. 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.
Local Chapter of your American Cancer Society
To receive literature about breast cancer support groups in your area.
Contact local hospitals including the one where your daughter is having treatment:
Ask them if they have support groups for breast cancer patients as well as for families. They probably won't have a special support group for families of loved ones with breast cancer, but they may have one for all types of cancer. This, too, would be valuable for you. Having the chance to talk with other mothers about cancer is emotionally beneficial. You are all suffering a crisis, no matter what kind of cancer your loved one has.
Talk with your pastor, rabbi or other religious leader.
Oftentimes, we don't turn to those who are standing ready, willing, and able to help us. Prayer is as powerful a tool in the fight against cancer as there is. Your church, synagogue or other religious organization may also have support group meetings for members who are also going through the trials and tribulations of such a disease. Remember, there is also power in numbers.
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. Your optimism and unrelentless love is the other part. If you're feeling down, see someone whom you trust to talk to and confide in. This is imperative. If your attitude is negative and/or depressing, try to keep this from your daughter. If not, your daughter may avoid you, tune you out and not include you in her treatment process--when she needs you the most.
Perhaps a minimum of twenty-five percent (25%) of mothers who request MSDBC information have difficult or poor relationships with their daughter. Try not to let "guilt" from past difficulties interfere with the support your daughter needs at this time. This is not the time to try to mend "old wounds." Your daughter has enough on her mind during the process of diagnosis, surgery and treatment and doesn't need the burden of dealing with your guilt and problems. Instead, put your energy to use by educating yourself about your daughter's diagnosis.
When you know the treatment/surgery date:
As soon as the surgeon sets the date for the surgery or other therapy, there are some decisions that must be made. First, determine how you as the mother of the breast cancer victim can help your daughter to become a survivor.
Some mothers are fortunate enough to be able to assist their daughters in all three of these categories. Other relationships are strained in some area(s), making it impossible.
After the surgery
If a mastectomy is used as the cancer treatment, there is usually only a one-night stay in the hospital. The next day, the patient is sent home with drains in the cavities. (My daughter had two of these hemo-vacs each time that she had mastectomy surgery.) These drains must be emptied, the contents measured and the quantities recorded at certain intervals for several days, until she returns to see the surgeon. The record of the drainage accompanies the patient when she returns to see the surgeon.
Assisting Your Daughter
Sometimes the mother and daughter live so far apart that it might be impossible to be present physically. If there is a financial crisis that accompanies the medical crisis, perhaps the mother could relieve some of the stress by helping financially during this time. Sometimes there are difficulties that have kept the mother-daughter relationship from being comfortable. There are some of these strained relationships that improve as a result of this crisis; other times they worsen. Emotional support is imperative. Regardless of the situation, sort out the elements and determine how helpful you can be.
Examples of providing physical support:
Medical bills can add up quickly and are frequently the cause of added stress. It is important to do whatever is possible to help relieve unnecessary stress so that everyone's attention can be spent on getting your daughter well again. Some parents are in a financial situation themselves that allows them to provide a great deal of financial support to their children; others are not, however, but that doesn't mean that mothers cannot help out monetarily at this time.
If you are financially able to help with medical bills then please offer to do so. Initially medical bills are covered for the most part by health insurance but copays and deductibles can run into large sums of dollars over time. There are also additional expenses that aren't recognized as being medically related but they are. These include parking expenses at hospitals where your daughter is receiving care, gasoline to and from the medical facility, buying food out when treatments require a lot of time and run into regular meal hours.
Below are some ways that you can contribute if your own financial resources are limited. These gestures can be very much appreciated and can help to make you feel better by contributing to your child's care in an indirect way.
It is important to acknowledge that the decisions that she must make about her healthcare are hers to make and not for other family members to determine for her. Respect her decisions as long as they are not irrational and might be harmful to her. For example, she may want to have immediate reconstruction done at the same time as her mastectomy. You may personally feel that reconstruction is unnecessary. That is your opinion though and not hers. What is important to her is what now must be important to all. Therefore, you need to support her decision to have this additional surgery done.
An example of an irrational response might be her decision to refuse chemotherapy because it will cause her to lose her hair. Without chemotherapy, however, her doctor says that she runs a seventy percent (70%) risk of mortality within the next five (5) years. Clearly it is in her best interest for you to intervene here and strongly encourage her to have chemotherapy, offering to help in every way possible through this ordeal. To encourage and support her you might help her get fitted for a wig that matches her hair color and style as close as possible. Reinforce that her hair will grow back but without chemotherapy her hair on her head won't matter because she runs a risk of ending her life. Obviously, other family members also need to promote healthy decision-making.
Never was there a time that a daughter needed her mother more than now. Just sitting and holding each other's hand can be a supportive gesture. It helps both of you. Let her talk openly and freely to you. Even though you are emotionally upset, try to be strong and under control whenever possible. This is difficult, but very important. If she sees that you are not coping well with this situation she will steer away from talking to you about it. The result is that the support that she so badly needs will not be sought from you because she is concerned that you aren't emotionally strong enough to help her at this time.
Pick up some fragranced bubble bath for her, or a new lipstick that she has been anxious to try. Also get her other feminine items like fragranced talc, cologne, sachets for her lingerie drawer... All of these things help to maintain and restore her feminine image that is being threatened by breast cancer treatments.
Give her a gift certificate for a romantic dinner for two. If she has young children, watch the grandchildren at your house so the romance can maintain its momentum once your daughter and her spouse or sweetie return home.
Celebrate milestones of completing each treatment phase with her:
Additional Ways to Help
If your daughter is scheduled for chemotherapy, shortly before her first treatment, consider having a "hat party" for her. You also might help someone else organize one.
It might also be helpful to know that many ACS state branches offer free wigs and breast prosthesis for those in need.
Make the most of every minute to assure your daughter, all other family members, as well as yourself that she will be able to overcome this disease that has frightened her and even attempted to take her from this world. An optimistic view by all who come in contact with her is imperative. This inner fight, an inner belief that all will be well, has proven to be an important component in breast cancer treatment.
As was quoted in the Eastern Shore Episcopalian, a publication of the Diocese of Easton (Maryland):
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
c/o Charmayne S. Dierker
21710 Bayshore Road
Chestertown, MD 21620-4401
Phone: (410) 778-1982
FAX (410) 778-1411
c/o Lillie Shockney
307 Bond Avenue
Reisterstown, MD 21136-1405
Phone: (410) 833-1837