American Cancer Society Screening Guidelines: Breast Cancer
The American Cancer Society released new guidelines for mammography and MRI screening.
New Screening Guidelines:

  • Women ages 40 to 44 should have the choice to start annual breast cancer screening with mammograms (x-rays of the breast) if they wish to do so
  • Women age 45 to 54 should get mammograms every year
  • Women 55 and older should switch to mammograms every 2 years, or can continue yearly screening
  • Screening should continue as long as a woman is in good health and is expected to live 10 more years or longer
  • All women should be familiar with the known benefits, limitations, and potential harms linked to breast cancer screening. They also should know how their breasts normally look and feel and report any breast changes to a health care provider right away

Guidelines for High Risk Women:

  • Woman who are at high risk for breast cancer based on certain factors should get an MRI and a mammogram every year

High Risk Factors Qualifying Women for MRI:

  • Have a lifetime risk of breast cancer of about 20% to 25% or greater, according to risk assessment tools that are based mainly on family history
  • Have a known BRCA1 or BRCA2 gene mutation
  • Have a first-degree relative (parent, brother, sister, or child) with a BRCA1 or BRCA2 gene mutation, and have not had genetic testing themselves
  • Had radiation therapy to the chest when they were between the ages of 10 and 30 years
  • Have Li-Fraumeni syndrome, Cowden syndrome, or Bannayan-Riley-Ruvalcaba syndrome, or have first-degree relatives with one of these syndromes

Mammography and MRI Screening for High Risk Candidates
If MRI is used, it should be in addition to, not instead of, a screening mammogram. This is because although an MRI is a more sensitive test (it’s more likely to detect cancer than a mammogram), it may still miss some cancers that a mammogram would detect.

For most women at high risk, screening with MRI and mammograms should begin at age 30 years and continue for as long as a woman is in good health. But because the evidence is limited about the best age at which to start screening, this decision should be based on shared decision-making between patients and their health care providers, taking into account personal circumstances and preferences.

High Risk Factors That Do Not Meet Criteria for MRI Screening
The American Cancer Society reports there is not enough evidence to recommend MRI screening for the following high risk patients:

  • Having a personal history of breast cancer, ductal carcinoma in situ (DCIS), lobular carcinoma in situ (LCIS), atypical ductal hyperplasia (ADH), or atypical lobular hyperplasia (ALH)
  • Having dense breasts (“extremely” or “heterogeneously” dense) as seen on a mammogram—American Cancer Society 2017

Reading Recommendations

Breast Cancer Treatment Handbook
Judy C. Kneece, RN, OCN Publisher: EduCare Publishing Inc.; 9th Edition, 2017
Available at www.educareinc.com
Recurrent and Metastatic
Breast Cancer Treatment Handbook

Judy C. Kneece, RN, OCN Publisher: EduCare Publishing Inc.; 1st Edition, 2019
Available at www.educareinc.com
Breast Cancer Support Partner Handbook
Judy C. Kneece, RN, OCN Publisher: EduCare Publishing Inc.; 9th Edition, 2017
Available at www.educareinc.com
Sexuality After Cancer Treatment
Judy C. Kneece, RN, OCN Publisher: EduCare Publishing Inc.; 1st Edition, 2017
Available at www.educareinc.com
Breast Cancer Survival Manual:
A Step-by-Step Guide for the Woman With Newly Diagnosed Breast Cancer John Link, M.D.
Publisher: Holt Paperbacks; 2007
Sexuality and Fertility After Cancer
Leslie R. Schover, Ph.D. Publisher: Wiley; 1997
 Male Breast Cancer Treatment Handbook
Judy C. Kneece, RN, OCN Publisher: EduCare Publishing Inc.; 1st Edition, 2018
Available at www.educareinc.com
Timeless Healing
Herbert Benson, M.D., Marg Stark Publisher: Scribner; 1997
Coping Skills  
The Feeling Good Handbook
David D. Burns
Publisher: Plume; 05/1999
Life Strategies:
Doing What Works, Doing What Matters
Phillip C. McGraw, Ph.D. Publisher: Hyperion; 2000
The Human Side of Cancer: Living With
Hope, Coping With Uncertainty Jimmie C. Holland, M.D., Sheldon Lewis Publisher: Harper Paperbacks; 2001
I Am Not My Breast Cancer

Ruth Peltason
Publisher: Harper Paperbacks; 2009
The Courage to Grieve:
The Classic Guide to Creative Living, Recovery, and Growth Through Grief Judy Tatelbaum
Publisher: William Morrow; 2008
The Portable Therapist:
Wise and Inspiring Answers to the Questions People in Therapy Ask the Most
Susanna McMahon, Ph.D.
Publisher: Dell; 1994
You Don’t Have to Suffer:
A Handbook for Moving Beyond Life’s Crises

Judy Tatelbaum
Publisher: Skyhorse Publishing; 2012
Diet and Exercise  
The Breast Cancer Survivor’s Fitness Plan (Harvard Medical School Guides)
Carolyn M. Kaelin, M.D., M.P.H., Francesca Coltrera, Josie Gardiner, Joy Prouty Publisher: McGraw-Hill; 2006
Dr. Ann’s 10-Step Diet: A Simple Plan for Permanent Weight Loss and Lifelong Vitality
Ann Kulze, M.D.
Publisher: Top Ten Wellness & Fitness; 2008
Complete Guide to Nutrition for Cancer Survivors
Abby S. Bloch, PhD, RD and Barbara Grant, MS, RD, CSO, LD
Publisher: American Cancer Society; 2010
Eating Well Through Cancer Holly Clegg, Gerald Miletello, M.D. Publisher: Self Published; 2001
Inspirational  
Cancer: 50 Essential Things to Do; Third Edition
Greg Anderson Publisher: Plume; 2009
The Healing Journey
Dr. O. Carl Simonton, Reid Henson Publisher: iUniverse; 2002
Chicken Soup for the Breast Cancer Survivor’s Soul: Stories to Inspire, Support and Heal
Jack Canfield, Mark Victor Hansen, Mary Olsen Kelly
Publisher: Health Communications; 2012
The Triumphant Patient: Become an Exceptional Patient in the Face of Life- Threatening Illness
Greg Anderson
Publisher: iUniverse, Inc.; 2000
Finding the “CAN” in Cancer
Terri Schinazi, Nancy Emerson, Susan Moonan Publisher: Lulu.com; 2007
 

Resources for Breast Cancer Patients

ADVOCACY GROUPS/ORGANIZATIONS

National Breast Cancer Coalition
www.breastcancerdeadline2020.org

Grassroots advocacy group of hundreds of member organizations and tens of thousands of individuals fighting breast cancer through action, advocacy and public education.

National Coalition for Cancer Survivorship
www.canceradvocacy.org
Advocates for quality cancer care for all Americans and the empowerment of cancer survivors through federal policy initiatives.

Patient Advocate Foundation
(Employment, Insurance and Debt Issues) www.patientadvocate.org
A national non-profit organization that serves as an active liaison between the patient and her insurer, employer or debt holders in matters relating to a diagnosis through case managers, doctors and attorneys. Seeks to safeguard patients through effective mediation, ensuring access to care, maintenance of employment and preservation of financial stability.

Susan G. Komen for the Cure
www.komen.org
Provides information on all areas of breast cancer treatment and support.

BREAST RECONSTRUCTION

American Cancer Society
www.cancer.org | Search: breast reconstruction
Provides information about breast reconstruction after mastectomy.

BreastCancer.org
www.breastcancer.org/pictures/treatment/
Pictures of breast cancer patients with different types of breast reconstruction.

Breast Implants
www.fda.gov | Search: breast implants
Information on choosing an implant, the associated risks, FDA regulations and manufacturers of implants.

Medline Plus
www.nlm.nih.gov | Search: breast reconstruction Guide to different types of breast reconstruction.

Microsurgical Breast Reconstruction
www.diepflap.com
Provides a description of DIEP and SGAP reconstruction; includes timelines and before and after photos.

Reconstruction Procedure Articles
www.mauricenahabedian.com
Clinical articles written by Dr. Nahabedian, Professor of Plastic Surgery at Georgetown University and an Associate Professor of Plastic Surgery at Johns Hopkins University.

CANCER TREATMENT/CLINICAL ASPECTS
American Society of Clinical Oncology (ASCO)
www.asco.org
Provides educational resources and general standards of practice.

Cancer.gov: Breast Cancer Clinical Trials
www.cancer.gov/clinicaltrials
Information on choosing and participating in clinical trials, results of recent trials and resources for finding a trial.

Inflammatory Breast Cancer Research
www.ibcresearch.org
General information, research, articles, news articles, discussion and commentary on inflammatory breast cancer.

National Cancer Institute
www.cancer.gov
A cancer treatment database providing prognostic, stage and treatment information on more than 1,000 protocol (treatment) summaries.

National Comprehensive Cancer Network: Breast Cancer Treatment Guidelines for Patients
www.nccn.org
Provides decision trees to aid patients in choosing treatment and follow-up options. Also available in Spanish.

CHILDREN AND FAMILIES
Caring Bridge

www.caringbridge.org
Non-profit service that provides a free website to anyone going through a health crisis.

Kids Konnected
www.kidskonnected.org
A non-profit organization that provides for the needs of the children of cancer patients. Informative website, a 24-hour hotline, leadership training, support groups, online forums, a teddy bear outreach program and support tools for children and families.

COMPLEMENTARY AND ALTERNATIVE MEDICINE (CAM)
Office of Dietary Supplements, NIH

www.ods.od.nih.gov
Research resources, frequently asked questions and fact sheets about supplements to help the public make informed decisions.

CAM-CANCER
http://www.cam-cancer.org/ | Select: CAM
Evidence-based summaries on different types of complementary care for cancer patients.

EMPLOYMENT CONCERNS
Americans With Disabilities Act

www.ada.gov
Provides basic information about the Americans with Disabilities Act.

Family and Medical Leave Act
www.dol.gov/whd/fmla
Provides a fact sheet about FMLA. The toll-free number reaches the Wage and Hour Division at the Department of Labor. They can provide the number of the office nearest to you.

National Coalition for Cancer Survivorship (NCCS) Employment
www.canceradvocacy.org
Provides information on your employment rights as a cancer survivor, including a free download of their publication, Working It Out.

The US Equal Employment Opportunity Commission
www.eeoc.gov
Includes frequently asked questions about cancer in the workplace and patients’ and survivors’ rights under the Americans with Disabilities Act.

GENERAL RESOURCES
Association of Cancer Online Resources

www.acor.org
Cancer information site that archives online support groups, information on treatments and clinical trials, links to other cancer education, advocacy groups on the Internet and much more.

BreastCancer.org
www.breastcancer.org
Breast cancer education site that includes articles, news, newsletters and chats. Archives the latest news about breast cancer and allows quick and specific searches.

CancerIndex.org
www.cancerindex.org
Index of cancer resources that provide information and support, along with a collection of media clips on the various breast cancers. To access media clips, choose “Breast Cancer” from the list on the main screen and then click on “Multimedia Breast Cancer Resources.”

Chemocare.com
www.chemocare.com
Provides the latest information about chemotherapy side effects and self-care for patients, families and caregivers. Regularly updated by Cleveland Clinics.

Merck Manual Online Medical Library
https://www.merckmanuals.com/home
Explains disorders, their symptoms, how they are diagnosed and how they can be treated.

National Cancer Institute (NCI)
www.cancer.gov
Provides comprehensive information on breast cancer diagnosis, treatment, statistics, research, clinical trials and breast cancer news.

HAIR CARE AND MAKE-UP
Look Good … Feel Better

www.lookgoodfeelbetter.org
A comprehensive online guide about caring for your hair and skin during cancer treatment. Contact your local American Cancer Society for free classes and instructions on make-up application and hair care during treatment.
Facing Our Risk Empowered (FORCE)

HEREDITARY BREAST CANCER
Facing Our Risk Empowered (FORCE)

www.facingourrisk.org
A national nonprofit organization devoted to hereditary breast and ovarian cancer. The mission includes support, education, advocacy, awareness and research specific to hereditary breast and ovarian cancer.

LYMPHEDEMA
National Lymphedema Network

www.lymphnet.org
Provides education and guidance to lymphedema patients and healthcare professionals.
American Cancer Society

MALE BREAST CANCER
American Cancer Society

www.cancer.org | Search: male breast cancer
Information and links to other websites focusing on male breast cancer.

PREGNANCY AND BREAST CANCER
Breast Cancer.org
www.breastcancer.org | Search: pregnant Information about treatment during pregnancy.

Fertile Hope
www.fertilehope.org
A national, non-profit organization dedicated to providing reproductive information, support and hope to cancer patients whose medical treatments present the risk of infertility.

Pregnant With Cancer Network
www.pregnantwithcancer.org
Connects pregnant women with cancer to women who have lived through the experience.

PROSTHESIS, WIGS & CAMISOLES
American Cancer Society

www.tlcdirect.org
Boutique offering prostheses, bras, camisoles, wigs and other post-surgical products.

ReForma
www.myreforma.com
Offers reusable, hypoallergenic and self-adhering prosthetic nipples. Available in two sizes and three colors.
Softee

www.softeeusa.com
Offers a wide selection of post-surgical products for recovery, including camisoles.

Wigs.com
www.wigs.com
Offers a full selection of wigs, including baseball caps with attached bangs and ponytails.

SEXUALITY
International Academy of Compounding Pharmacies

www.iacprx.org
Allows patients to search for a local compounding pharmacist.

Pure Romance
www.pureromance.com
Offers a range of sexual products and in-home parties. The Sensuality, Sexuality, Survival (SSS) program serves as a resource for patients who have questions about restoring their intimacy.

SUPPORT GROUPS/ORGANIZATIONS
African-American Breast Cancer Alliance (AABCA)

www.aabcainc.org
Provides education to African-American women on breast health, early detection and breast cancer support groups.

Cancer Care, Inc.
www.cancercare.org
Offers free counseling, education, referral and direct financial assistance to cancer patients.

Living Beyond Breast Cancer
www.lbbc.org
Provides interactive conferences, toll-free information and support line, teleconferences, free newsletters and a networking program.

Local Support Groups
1-800-ACS-2345
Call the national American Cancer Society number and ask for local support group information. Call your cancer center and ask for local support group information.

National Coalition for Cancer Survivorship (NCCS)
www.canceradvocacy.org | Search: Cancer Survival Toolbox
Survivorship information and support. The Cancer Survival Toolbox, a CD of survival skills, is provided free (also available in Spanish).

Pink-Link
www.pink-link.org
A free online breast cancer support network with access to a member forum, online journals and breast cancer resources.

Sharsheret (Jewish Women)
www.sharsheret.org
Provides support for young Jewish women facing breast cancer. Offers a peer support network that connects young women with others who share similar diagnoses and experiences, as well as education and outreach programs.

Sisters Network Inc. (African-American Women)
www.sistersnetworkinc.org
An African-American breast cancer survivorship organization. Promotes the importance of breast health through support, breast education programs, resources, information and research.

The Young Survival Coalition
www.youngsurvival.org
Advocacy and awareness organization for young women who are diagnosed with breast cancer. Offers support, information and education.

SURGERY
Breast Cancer Network of Strength

1-800-221-2141 (24-Hour Hotline-English) | 1-800-986-9505 (24-Hour Hotline-Spanish) www.networkofstrength.org
Gives referral information to major cancer treatment centers for second opinions or treatments not offered in some localities.

Caring Connections
www.caringinfo.org/stateaddownload
Provides free advance directives and instructions for each state.

SURVIVORSHIP MAGAZINES
Breast Cancer Wellness

www.breastcancerwellness.org
The mission of the magazine is to empower the mind, body and spirit of women diagnosed with breast cancer. Offers a paid subscription.

Coping With Cancer
www.copingmag.com
Magazine for people whose lives have been touched by cancer. Offers a paid subscription.

CURE
www.curetoday.com
CURE provides information on recent advancements in diagnosis, treatment and prevention of cancer. Offers a free subscription.

SURVIVORSHIP RESOURCES
Imaginis

www.imaginis.com
Provides education and the latest news in breast cancer for professionals and patients. Sign up for the online newsletter to receive the latest news and breast cancer information.

Reach To Recovery
www.cancer.org | Search: Reach To Recovery
American Cancer Society program offers in-home visits from volunteers. Volunteers will share helpful information for recovery, including range of motion exercises for the surgical arm.

Survivorship A-Z: Practical Information for Living Successfully After a Diagnosis
www.survivorshipatoz.org
Provides practical information survivors need to thrive in the new normal that exists after a life- changing diagnosis.

Family Support
Helping Someone You Love Who Has Cancer
If someone you love has cancer, how can you best help?

  • One of the most important things you can do is to simply be there when needed. It is important to listen to the patient. Ask what they need or want. Accept the patient’s behavior, knowing that stressful events such as a cancer diagnosis will often cause one to act out of character. The patient may express anger, resentment, discouragement and act depressed
  • This is not uncommon after a diagnosis. Avoid judgmental comments and conflicts
  • If you are not a close family member, and are not sure when to visit, simply send a card, email or call. Ask when would be a good time to visit. “Would it be convenient for me to come by today, or would it be better if I wait until next week?” Dropping by unexpectedly may cause stress if the patient is not feeling up to a visit
  • When visiting, keep it brief. Patients are overwhelmed with making treatment decisions after a diagnosis. During treatment, energy levels may not be up to long visits
  • Ask for specific ways to help. “May I bring over a casserole?” “Can I drive the children to school this week?” “Can I pick up some groceries while I am doing my shopping?
    am available to drive you to your treatments if you would like.” Offering what you can do instead of being vague is very helpful and appreciated.
  • Ask about food preferences before you prepare and take meals. “I am making a chicken casserole. Does your family eat this?” or “What´s the family´s favorite food?”
  • During cancer treatment, helping the mate and children also helps the patient. Remember to ask the mate specifically what you can do to help during this time.
  • When visiting, resist asking direct questions about diagnosis or treatment. Patients may not want to talk about it or may want to share the details with only a few people. Let the patient guide your discussion about their illness. Allow the patient the opportunity to discuss it with you if they desire
  • Do not tell the patient stories of other people you know who have had something similar, unless the news is good. Depressing stories could cause additional stress
  • Avoid comparing the illness with someone else you know. Breast cancer is a common name for more than 15 different types of breast tumors. Patients very seldom have enough in common to be compared with another patient’s treatments and outcomes
  • Before leaving, ask if you can call and talk to a family member or another support person for medical updates. Calling daily or even weekly may be a burden to someone already under tremendous stress

Support Tips for Family Members
The one you love has received the diagnosis of cancer. Because you love the patient, you need to understand how you can best help during this experience. Listed below are support components that other patients have said were essential to their recovery.

Support Tips:

  • Assure the patient that you will be there to support them when needed—that cancer will not change your relationship with them. The greatest fear is being left alone to suffer or feeling that they are a burden to the family unit because of the illness
  • Allow the patient to verbalize fears, concerns and thoughts without critical or judgmental input from you. A person who cannot communicate openly with family members may not master the emotions the illness creates, and this can impede recovery. Feelings may change as time passes. Please be patient and encourage the patient to share freely
  • Accept tears as a necessary part of healing. Tears are a common reaction to loss of health status, such as a diagnosis of cancer. A person who does not cry when suffering great change in health is a person who is probably not in touch with the reality of loss. Tears are not a sign of weakness, but a sign that healing is taking place. Do not fear that the patient will be upset if they see your tears; instead, seeing your tears gives them permission to openly cry with you. This is often the time that emotional healing begins in a family. Tears serve as a salve to the soul, for both the patient and the family members
  • Allow the patient time to be alone to sort through the loss and personal feelings. Sometimes family members wrongly believe that the patient must be talking to or surrounded by family members after the diagnosis; but often the person wants and needs time alone to silently think about what is occurring. Do not think that this is a sign the patient is shutting you out. Instead, it is a sign that they are thinking through their problems. Some people need more privacy than others. Allow them this silence and offer assurance that you are there to talk openly if and when needed
  • Understand that the patient cannot talk openly to everyone about their feelings. Often patients will choose only one, or a few, family members or friends for open communication because it may be very uncomfortable to talk with everyone about their situation. Do not insist that the patient keep retelling the “illness” story or sharing their feelings. As long as the patient is talking to one or more persons openly they will do well
  • Recognize that the most stressful and damaging event that can slow the healing process is family conflict. Family stress can alter the patient’s immune system function, thus blocking the key factor to recovery. If the immune system is compromised it cannot perform properly; therefore, healing cannot take place. Even the most medically advanced cancer treatments cannot work if the patient is under constant stress at home. Attempt to minimize any conflicts in her environment. It is essential that the patient is in an atmosphere where they feel safe and removed from conflict. Do your part to avoid conflict with the patient while not secluding them from normal family life
  • Support the patient in the way they need and want help. Do not assume you know what the patient needs; ask. Some patients feel stripped of their roles and feel useless when other family members suggest that they are unable to fulfill previous family responsibilities. The patient needs to feel that they are still a vital and essential part of the family. Do not take away roles or responsibilities unless the patient is too weak or requests relief from the routine family duties
  • After a cancer diagnosis, there is much to be learned and many decisions to be made about the diagnosis and treatment. If the patient agrees, it may be helpful for a family member or friend to gather accurate, useful information through which the patient can make decisions to best meet needs. It is also beneficial for this family member or friend to accompany the patient to appointments where these options will be discussed to help facilitate and verify the decision-making process
  • Offer to go with the patient to a support group to learn more about illness and to find ways to assist them to effectively cope

Remember:

  • This is the same person that you knew before diagnosis. The patient would like as little change as possible
  • Let the patient talk openly and freely when needed.
  • Do not feel that tears are a weakness
  • Allow the patient to maintain former roles in the family as much as possible.
  • Eliminate as much stress as possible from the environment
  • Help the patient learn as much as possible about the disease
  • Offer to go with the patient to support groups or to seek additional coping skills if needed
  • You are a vital part of the recovery process. Your support may be as important as the medications the patient will receive