Collaboration: National Treatment Assistance Fund

The costs of breast cancer treatment can impose a significant financial burden on survivors. The Susan G. Komen® National Treatment Assistance Fund helps bridge the gap for individuals who are actively undergoing breast cancer treatment. 

The aim of the National Treatment Assistance Fund is to increase the number of individuals who remain in the breast cancer continuum of care by providing financial assistance to ensure adherence and completion of breast cancer treatment. Funding helps individuals of any age who have been diagnosed with breast cancer, at any stage of the disease.

The fund provides two types of financial assistance – assistance grants and co-pay – based upon need and eligibility requirements. This limited financial assistance program is currently administered by CancerCare and the co-pay program is currently administered by Patient Advocate Foundation.

Limited financial assistance grants of $300 are awarded to underinsured or uninsured individuals across the country in need of:

• Pain and anti-nausea medication
• Lymphedema support and supplies with a prescription
• Durable medical equipment ordered by their physician
• Transportation to and from treatment
• Childcare and/or eldercare necessitated by treatment
• Oral medication for cancer treatment

Co-Pay Relief up to $5000 is provided for insured patients who qualify medically and financially to help with the co-pays for their prescriptions and/or pharmaceutical treatments.

For both programs, financial assistance is granted to individuals who meet pre-determined eligibility criteria.

Learn more: http://ww5.komen.org/WhatWeDo/IntheCommunity/NationalCommunityHealthPrograms/NationalCommunityHealthPrograms.html

Collaboration: Metastatic Breast Cancer Alliance

Metastatic breast cancer is breast cancer that has spread beyond the breast to other organs in the body. In the U.S., most women with metastatic cancer develop it when cancer returns at some point after their initial breast cancer diagnosis and treatment. An estimated 155,000 women and men are living with metastatic breast cancer in the U.S.

In October 2013, Susan G. Komen® joined forces with 14 other cancer charities and advocacy groups to form the Metastatic Breast Cancer Alliance (MBC Alliance).

The MBC Alliance aims to unify the efforts of its members and to increase awareness and education while advancing research and policy – efforts for metastatic breast cancer that have the potential to extend life, enhance quality of life and ultimately find a cure.

Learn more at http://www.mbcalliance.org/

Watch the MBC Alliance’s video about the experiences of women living with MBC:  https://www.youtube.com/watch?v=HewanXqBDlM

Additional information on Metastatic Breast Cancer: http://ww5.komen.org/BreastCancer/SupportforPeoplewithMetastaticBreastCancer.html

http://ww5.komen.org/BreastCancer/MetastaticBreastCancerHome.html

Collaboration: Young Women

Though most women who get breast cancer are over age 50, young women can and do get breast cancer. Five percent of all breast cancers diagnosed in the U.S. each year occur in women under 40.
A breast cancer diagnosis can be especially shocking and challenging for young women. At a time in life most often reserved for family and career, issues of treatment, recovery and survivorship take priority for young women with breast cancer.

Here are some Komen collaborations focused on young women with breast cancer:

SUSAN G. KOMEN/DR. SUSAN LOVE RESEARCH FOUNDATION/YOUNG SURVIVAL COALITION

In Fall 2013, Susan G. Komen® partnered with the Dr. Susan Love Research Foundation (DSLRF) and the Young Survival Coalition (YSC) to advance research into side effects of breast cancer treatment, along with research into the causes of, and preventive strategies for, breast cancer. 

Learn more: http://www.businesswire.com/news/home/20130930005441/en#.VBtnlxaAQmM

Young Survival Coalition – Research Think Tank

In February 2013, Komen was a sponsor for the Young Survival Coalition (YSC) Research Think Tank in order for approximately 60 researchers, medical experts, and educated research advocates to gather in Arlington, VA. In true think tank fashion, the attendees shared their knowledge and helped YSC prioritize unanswered research questions affecting young women with breast cancer.

Read the resulting report: http://www.youngsurvival.org/sites/default/files/uploaded_files/ResearchAgenda-201.pdf

Conference Sponsorships

From 2008 through 2014, Komen was a proud to be Lead Sponsor of the Annual Conference for Young Women Affected by Breast Cancer, funding travel scholarships to provide much needed financial assistance for young survivors and patients to attend the annual conference. More commonly known as C4YW, this meeting was a collaborative production between Living Beyond Breast Cancer and Young Survival Coalition. The final C4YW was held in February of 2014 in Orlando, FL.

Komen is a sponsor of the international Breast Cancer in Young Women, funding travel scholarships specifically allowing patient advocates to attend this scientific meeting and ensure that the patient voice is incorporated into the research conversation. This bi-annual conference is an opportunity for the latest updates on this field and a platform for generating future research concepts and collaborations. It will cover epidemiology, molecular biology, genetics, pathology, surgery, radiotherapy, systemic therapy and fertility preservation in young women with breast cancer.

Komen is sponsoring patient and patient advocate travel scholarships for the inaugural YSC Summit in March 2015 in Houston, TX. This three-day national conference will feature inspirational speakers, workshops addressing the unique issues that young women with breast cancer face, and special wellness activities. Find the most up-to-date, evidence-based information and tools. Attendees will have the opportunity to connect with a community of other young survivors and co-survivors from across the country. Learn more: http://www.youngsurvival.org/conferences

Collaboration: Global

At Susan G. Komen®, we believe that where a woman lives shouldn’t determine if she lives. So Komen is fighting breast cancer in countries across the globe to reduce breast cancer mortality worldwide.
Here are two examples of Komen global collaborations:

Africa: Pink Ribbon Red Ribbon

Breast and cervical cancers take a particularly devastating toll on women in developing countries. In fact, they’re the leading causes of cancer deaths among women in sub-Saharan Africa. Komen is partnering with numerous U.S. and African organizations and working to put an end to these cancer deaths.

Pink Ribbon Red Ribbon (PRRR) was cofounded in September 2011 by Susan G. Komen®, the George W. Bush Institute, the U.S. Presidents’ Emergency Plan for AIDS Relief (PEPFAR) and the Joint United Nations Programme on HIV/AIDS (UNAIDS). PRRR aims to cost-effectively integrate cervical and breast cancer services into existing health service delivery platforms, beginning by leveraging the PEPFAR infrastructure for HIV/AIDS. Programs are active in Zambia and Tanzania.

Susan G. Komen’s/PRRR’S overarching global objective is to save the lives of women diagnosed with breast cancer by down-staging the disease at diagnosis and facilitating access to timely treatment. Early stage diagnosis of breast cancer is associated with significantly improved treatment outcomes.

Learn more: http://ww5.komen.org/WhatWeDo/AroundtheWorld/Africa/Africa.html

Latin America: Komen and the Caterpillar Foundation

Breast cancer is the most common cancer and leading cause of cancer deaths in women of Latin America. Several countries exhibit some of the highest mortality rates in the world. Komen works with the Ministries of Health and local organizations in Latin America to help improve awareness of breast cancer and break down barriers to help women access breast health care.

In Latin America, Susan G. Komen and the Caterpillar Foundation have partnered to improve detection of breast cancer and save lives by increasing awareness, strengthening services, and removing barriers to accessing early screening, treatment and cancer care in program communities.
The project initiated in 2011 as two-year collaboration with the Caterpillar Foundation and received additional partnership funding resulting in a three-year extension for activities to continue through 2016. Programs are active in Brazil, Mexico and Panama.

Learn more: http://ww5.komen.org/WhatWeDo/AroundtheWorld/Americas/LatinAmerica.html

Collaboration: Komen Helpline

1-877 GO KOMEN (1-877-465-6636)

The Susan G. Komen® helpline offers breast cancer education, psychosocial support and information about resources callers need to cope with breast cancer issues.  The helpline also serves as an expert resource and support system, helping patients and families to problem solve by providing information and emotional support and access to Komen’s excellent resources.  The helpline service hours are 9 am – 10 pm ET, Monday - Friday.

The most common inquiries are for breast health information, low-cost mammography resources, financial assistance and support and educational resources.  This dedicated helpline staff of bilingual specialists is overseen by Masters-level social workers and assists about 13,000 people a year.

A helpline specialist may assist a caller in the following ways:

• Provide information about breast health issues and/or breast cancer
• Help callers develop a list of needs in order of their priority
• Provide support and information about relevant community or national resources
• Educate on coping skills that can help them deal with their cancer diagnosis
• Reassure clients that their feelings and concerns are typical—that they are not alone in the ways they feel
• Evaluate the need for emotional support
• Identify and provide information about other organizations that provide financial assistance and other support services
• Teach the client how to better communicate with their health care team
• Rehearse to prepare for doctors’ appointments and to help clients formulate questions and find ways to remember the answers

http://ww5.komen.org/BreastCancer/hq1800.html

Breast Cancer Research: Susan G. Komen Tissue Bank at the IU Simon Cancer Center

Since 2007, Susan G. Komen® has invested more than $7 million to support the Susan G. Komen® Tissue Bank at the Indiana University Simon Cancer Center – the only healthy breast tissue repository in the world! By studying normal tissue, the tissue bank accelerates research on the causes and prevention of breast cancer.

The Komen Tissue Bank is the only repository in the world for normal breast tissue and matched serum, plasma and DNA. By studying normal tissue, we accelerate research for the causes and prevention of breast cancer. To more deeply understand the evolution of the disease, it is necessary to compare abnormal, cancerous tissue against normal, healthy tissue. We are committed to making a difference by acting as advocates for thinking, sharing and understanding NORMAL.

Learn more about the Komen Tissue Bank: http://komentissuebank.iu.edu/

Read more about the history and work of the Komen Tissue Bank: http://ww5.komen.org/uploadedFiles/Content/ResearchGrants/Tissue%20Bank%20one%20pager%20FNL.pdf

Read a first-hand account of tissue collection days: http://blog.komen.org/?p=995

Breast Cancer Research: Research Advocacy

Research advocates bring the patient’s voice to research, ensuring that the unique and valuable perspectives of breast cancer patients, survivors and co-survivors are integrated into the scientific dialogue and decisions, which impact progress toward ending breast cancer.

Research advocates play a variety of roles throughout the research process. Advocates do everything from educating others about research to participating in research grant peer reviews and working with or as part of scientific teams to help prioritize, develop and implement research projects.

Susan G. Komen®’s Advocates in Science (AIS) program is a community of dedicated volunteer advocates who work to reduce the burden of breast cancer in their communities.

Learn more: http://ww5.komen.org/WhatWeDo/WeFundResearch/BringingthePatientVoicetoResearch/BringingthePatientVoicetoResearch.html

Breast Cancer Research: Clinical Trials

When it comes to cancer, clinical trials are one of the biggest reasons we’ve seen gains in breast cancer survival over the past 30 years. And improved survival hasn’t been the only benefit. Quality of life for people living with cancer has also improved as trials have helped identify more targeted treatments that can help limit many of the side effects of cancer therapies. Most of us have heard the term “clinical trials” but haven’t given it much thought. Like a lot of important things that fly under the radar, clinical trials have had a huge impact on society.

At their most basic, clinical trials studies done in people that test the safety and effectiveness of ways to prevent, detect or treat disease. Participants may benefit from clinical trials themselves, or their participation may benefit others in the future. They are the first to receive new treatments under investigation and, in cancer clinical trials, are guaranteed to receive the best standard care possible. And, clinical trials offer a way for women with breast cancer to play an active role in their own health care and help others by adding to medical research.

For clinical trials of new cancer treatments, there are four main types of trials, though there can be some overlap between types depending on the study.

Phase 1 (phase I): Trials that test to see if a new treatment is safe to use

Phase 2 (phase II): Trials that test to see how well a new treatment works on a certain type of cancer
Phase 3 (phase III): Trials that test to see how well a new treatment works compared to the best standard treatment (standard of care)
Phase 4 (phase IV): Trials that test the continued effectiveness and safety of a treatment after it’s been approved for use

There are many sources you can use for finding clinical trials. Each is a little different and some allow searching for trials based on factors like age, gender, breast cancer history, treatment history and geographic area as well as study-type preferences. For example, BreastCancerTrials.org in collaboration with Susan G. Komen®, offers a custom matching service that can help you find a clinical trial that fits your health needs. Though these sites can be helpful search tools, the best approach is to ask your health care provider or local medical center for help finding an appropriate clinical trial.

Learn more: http://ww5.komen.org/BreastCancer/ClinicalTrials.html

Breast Cancer Research: Young Researchers

Susan G. Komen® is again looking to the future of breast cancer research by designating this the year of the “Young Investigator” for the Komen Research Program. Recalling our history, you’ll find Komen’s promise to “energize the science” has included funding young investigators since 1990. Now, some of those first young investigators are some of the best “seasoned” breast cancer researchers in the world.

They are dedicated to Komen and breast cancer research and are now guiding new young minds to join them.

The field of breast cancer research has consistently attracted new minds to the pursuit of the cures. Unfortunately, with lagging funding everywhere and fewer jobs available, it is hard to keep young scientists in the field of breast cancer research. Without these future leaders and a dedicated workforce, our progress against the disease will not happen. That’s where the Komen Research Program comes in – by providing critical funding that supports the continued research, and thus the continued careers, of these promising scientists. But, we need everyone to help raise the dollars to fund the research.

Research is our investment in the future for our children and friends, an investment in a future without breast cancer.

Learn more about how Komen funds research: http://ww5.komen.org/WhatWeDo/WeFundResearch/HowWeFundResearch/HowWeFundResearch.html

 

 

Breast Cancer Research: Triple Negative Breast Cancer

About 15 to 20 percent of breast cancers diagnosed today in the U.S. are triple negative breast cancers (TNBC). These tumors tend to occur more often in younger women and African American women. Women who carry a mutated BRCA1 gene tend to have breast cancers that are triple negative. Triple negative tumors are often aggressive. Today there are no targeted therapies specifically for TNBC. However, triple negative breast cancer can be treated with surgery, radiation therapy and chemotherapy. More research is needed to better understand how this cancer develops and how it can be treated more effectively. And that is what Susan G. Komen® is doing.

Komen has invested more than $74 million in more than 100 research grants focused on triple negative breast cancer since it was first identified as a distinct type of breast cancer in 2006. This research has helped us to understand that:

• There are at least 6 different subtypes of TNBC, each with different abnormalities, which may be treated using drugs that are specific to these abnormalities.
• A combination of a new drug that targets a “death receptor” in TNBC cells and standard chemotherapy may be more effective at killing TNBC than chemotherapy alone.
• A blood test that measures the presence of a specific set of genes may be used to identify TNBC patients with BRCA mutations, resulting in earlier intervention and improved treatment.

Learn more: http://ww5.komen.org/BreastCancer/TripleNegativeBreastCancer.html

Breast Cancer Research: Progress Toward the Cure

Because of medical research leading to effective treatments and earlier diagnosis, the death rate for breast cancer is 34 percent lower than it was 25 years ago. Today, more than 3 million people in the U.S. are breast cancer survivors. Susan G. Komen®’s investment in medical research over the past 30 years has contributed to many of the advances that now help women and men affected by breast cancer live longer and healthier lives.

Major changes have had an impact, including:

• Increase in awareness, screening, and early detection
• Less invasive surgery
• Improvements in breast reconstruction
• More effective chemotherapy
• More effective hormonal therapy
• Development and use of targeted therapy
• Extended survival and better tolerated treatment for metastatic disease
• Dramatic changes in quality of life for survivors
• Widespread option for conservative surgery
• Extensive use of sentinel node biopsy

Learn more about Komen’s research accomplishments: http://ww5.komen.org/WhatWeDo/WeFundResearch/ResearchAccomplishments/ResearchAccomplishments.html

Breast Cancer Research: Komen’s Impact

Research is one of our best weapons against breast cancer. Over the past 30 years, it’s fueled our knowledge of breast cancer and helped us understand that breast cancer is not just a single disease but many diseases, unique to each individual.

Susan G. Komen® funds more breast cancer research than any other nonprofit, while also delivering real-time help to those facing the disease. Since 1982, Komen has funded more than $800 million in research. Thanks to the generosity of donors and supporters, Komen is funding lifesaving research in all areas of breast cancer, from basic biology to prevention to treatment and to survivorship.

With continued support, this scientific research will address some of the most pressing issues in breast cancer today:

• Identifying and improving methods of early detection
• Ensuring more accurate diagnoses
• Developing new approaches to prevention
• Enabling personalized treatments based on breast cancer subtypes and the genetic make-up of a tumor 

Komen also continues to support all levels of breast cancer researchers, scientific research and clinical trials, research partnerships and collaborations, scientific conferences and research education.

Read more about the impact of Komen-funded research: http://ww5.komen.org/WhatWeDo/WeFundResearch/WeFundResearch.html

Survivorship: Post-Diagnosis

Breast Reconstruction
Breast reconstruction can help restore the look and feel of the breast after a mastectomy. Performed by a plastic surgeon, breast reconstruction can be done at the same time as the mastectomy ("immediate") or at a later date ("delayed"). Many women now get immediate breast reconstruction. However, the timing depends on your situation and the treatment you will have after surgery. Not all women can have immediate reconstruction. It is important to discuss your options with your plastic surgeon, breast surgeon and oncologist (and your radiation oncologist if you are having radiation therapy).

There is no one best reconstruction method. There are pros and cons to each. For example, breast implants require less extensive surgery than procedures using your own body tissues, but the results may look and feel less natural. However, there are fairly few complications with any of the current techniques, especially when a woman is properly selected for a procedure. Most breast reconstruction methods involve several steps. Both immediate and delayed reconstructions require a hospital stay for the first procedure. However, follow-up procedures may be done on an outpatient basis.

Screening/Rediagnosis

Breast cancer survivors have an increased risk of getting a new breast cancer compared to those who have never had breast cancer. That is why it is important to get the follow-up care your doctor recommends. With proper follow-up, your doctor can keep track of how you are doing. This includes checking for and treating side effects. Follow-up care can also help ensure any recurrence of breast cancer can be found early when treatment is most effective. 
The National Comprehensive Cancer Network offers these guidelines for follow-up of breast cancer treatment:

• Have a mammogram every 12 months. (For women treated with lumpectomy, have a mammogram six months after radiation therapy ends, then every 12 months.)
• Have a physical exam every three to six months for the first three years, every six to 12 months for years four and five, then every 12 months.
• Have a pelvic exam every 12 months if taking tamoxifen and have not had the uterus removed(have not had a hysterectomy).

Follow-up Tests
Depending on the symptoms, blood tests (including tumor marker tests) and imaging tests (including bone scans, CT scans, PET scans and chest X-rays) may be used to check for metastases. Using these tests to check for early metastases in people with no symptoms of metastases does not increase survival. For people with no symptoms of metastases, blood and imaging tests (other than mammography) are not a standard part of follow-up care.

Learn more about breast reconstruction: http://ww5.komen.org/BreastCancer/BreastReconstruction.html

Learn more about medical care after breast cancer treatment: http://ww5.komen.org/BreastCancer/MedicalCareAfterTreatment.html

Survivorship: Intimacy

Being diagnosed with breast cancer can take a physical toll on your body, not to mention your intimate and sexual health. Breast cancer and treatment for breast cancer can sometimes make it difficult to be sexual and intimate with another person, and that is okay and natural.

Self-Image

A woman’s breasts symbolize so many things, including motherhood, sexuality and being a woman. For some women, breasts now represent cancer. Most women, and their partners, will need to take time to grieve the loss of (or changes in) their breast(s). Joining a support group may help you cope with the changes in your body and self-image. Remind yourself that healing takes time and at some point, you will become more comfortable with your new normal.

Accepting yourself as you are is all part of the process.

How to Talk with Your Partner

While there is no such thing as a perfect time to talk, some times are better than others. Choose a moment when you are alone and relaxed. When you feel comfortable, give yourself and your partner permission to talk about your feelings, both good and bad. Above all else, be honest.

• Your biggest fears. You may not feel pretty or worry that your partner finds you less attractive. You may be afraid your partner will reject or leave you due to your breast cancer.
• Your partner’s fears. Your partner may be afraid of physically hurting you during sex. He/she may be confused or unsure of the best way to show support and affection and is waiting on you for cues on when to resume an intimate and/or sexual relationship.
• Birth control. Treatments such as radiation or chemotherapy and tamoxifen can cause birth defects, so it is import to talk to your partner about birth control. After treatment, do not assume that you can no longer become pregnant.
• Your “new” sex life. Breast cancer may change what you like to do and how you like to be touched during sex. You may not even want to have sex for a while, so it is important to talk to your partner about how you are feeling.

Other Things You Can Do

• Get romantic. Bring romance back by planning a candlelight dinner, taking a bubble bath or other romantic gestures. Take the time to nurture your sexuality.
• Go slow. Kissing and touching can provide pleasure and help with intimacy. Do not rush into something until you feel comfortable with it.
• Get comfortable. Sex may be painful because of changes in your body, due to breast cancer treatment. Try using water-based lubricants just before sex. To help with vaginal dryness, try an estrogen-free vaginal moisturizer. These products are available over the counter without a prescription. Since they do not contain estrogen, they’re safe for breast cancer survivors. If vaginal dryness is still a problem, contact your doctor.
• Try something different. Change your sexual routine and try new things and have fun!
• Get some advice. Consider seeking advice from a marriage counselor, sex therapist or joining a support group. You can go with your partner or by yourself.

Make sure to share this information with your partner. Getting the intimacy you need should not be your responsibility alone.

Learn more: http://ww5.komen.org/BreastCancer/SexandSexuality.html

Survivorship: Psychosocial Factors and Breast Cancer

One in eight women will be diagnosed with breast cancer in her lifetime, and 40,000 women in the U.S. will die from the disease this year. It is no surprise that, when faced with this news, women possibly experience shock, fear, sadness, disbelief or other feelings of psychosocial distress. Many women are able to adjust to and manage the disease, survivorship and their “new normal.” Some women will experience times of persistent psychosocial distress and would benefit from interventions. Intervention is important because distress can interfere with a woman’s ability to cope with cancer treatment and can extend along the continuum from common feelings of vulnerability fear, and sadness, to true depression, anxiety, panic and feeling isolated.

Coping with a Breast Cancer Diagnosis
Learn about breast cancer at your own pace. Get information about clinical trials, treatment options and side effects. Doctors can make suggestions, but decisions should be made together.
Seek professional help if you need help managing your issues with breast cancer and how to cope with your feelings.

• Talk to your doctor honestly about your breast cancer journey.
• Be patient. Coping with breast cancer requires time, acceptance, a fighting spirit and support.
• Lean on your network of family and friends. They can help
• Lend support from diagnosis through treatment and beyond
• With day-to-day tasks
• Gather information for you about breast cancer

Coping with Fear of Recurrence

It is normal to have thoughts and concerns about recurrence (being re-diagnosed with breast cancer). Fears of recurrence often peak right after treatment, but they can happen at any time. You can take control of your fears and learn effective triggers and coping strategies to keep these fears from consuming you. Some of the strategies include:

• Get and stay informed. Learn about your cancer and risk of recurrence, continue your follow-up-care plan and take care of yourself.
• Remove any blame. Never blame yourself for your cancer diagnosis. Cancer does not choose to punish people and it doesn’t discriminate. Cancer can happen to anyone.
• Exercise. Talk to your doctor and begin an appropriate exercise program. It can improve your mood and make you feel healthy, confident and strong.
• Relax. Find ways to relax like yoga, meditation, prayer, etc.
• Acknowledge your feelings. Talk to family, friends or other survivors. Journal, craft or find creative ways to give voice to your emotions.
• Focus on the positive. Find ways to stay hopeful and use your energy to stay as healthy as possible.
• Control what you can. Empower yourself by taking an active role in your healthcare team.

Learn more: http://ww5.komen.org/BreastCancer/QualityofLife.html

Learn more about breast cancer recurrence: http://ww5.komen.org/BreastCancer/FearofRelapse.html

Survivorship: Family/Co-Survivors

A breast cancer diagnosis can be confusing, overwhelming and scary. Make sure that you build and search for a support community to support you in your journey. The support of others who care about you and your well-being can give you the strength to cope and retain a sense of control during this challenging time.

At Susan G. Komen, we consider a person a survivor from the moment a breast cancer diagnosis is confirmed. Co-survivors can be family members, spouses or partners, friends, health care providers or colleagues who are there to lend support from diagnosis through treatment and beyond.

Getting the Support You Need

There are three main types of support: informational, emotional and practical. You may need different kinds of support at different times and from different people.

• Informational Support provides you with information about breast cancer. This might include finding facts about your type of breast cancer or gathering information about your treatment options. The Komen helpline provides free support services to anyone with questions or concerns about breast cancer. 1-877-GO KOMEN (1-877-465-6636)
• Emotional Support looks after your emotional well-being. Emotional supporters listen to you, give you the chance to express your feelings and just be there when you need a friend.
• Practical Support helps you with specific tasks. This might include rides to appointments, help with cooking or cleaning or going to the doctor with you to take notes.

Building your Support Community

Write down the names of people (co-survivors) who might support you in different ways. Your list may include your partner, children, other family members, friends, support group members, co-workers, clergy, neighbors or even health care providers. Look outside your existing network of support people, too. Have you met someone who has experienced breast cancer that you could reach out to?

Write down what kind of support you would like most from each person on your list. For instance, you may want your doctor to give you informational support, your best friend to give you practical support, your sister to give you emotional support, and your partner to give you all three types of support.
Tell each person exactly what he or she can do to help you and be specific. They can help with laundry, the bills, cleaning, etc. Sometimes all it takes is asking.
Have a “back-up” support person. Although it is true that you are the one who has breast cancer, the special people in your life have also been affected by your illness. Sometimes co-survivors will need to deal with their own feelings before they can support you.

Benefits of Co-Survivor Support

• Reduced anxiety and psychological distress
• Reduced depression and feelings of pain
• Improved mood and/or self-image
• Improved ability to cope
• Improved feelings of control

What Can I Do? What Can I Say?

• It doesn't take time-consuming and heroic gestures to be a good co-survivor. Sometimes being there and listening is all that matters. Here are just a few ideas of what co-survivors can do to help a breast cancer survivor:
• Run errands
• Send a “Thinking of You” card
• Take them to an appointment
• Create an online calendar to organize meal deliveries, rides and other tasks
• Bring together family, friends and coworkers to help support and care for your loved one through a caring social network and planner. CaringBridge provides sites where friends and family can stay connected and updated on someone’s health event and leave messages of hope and encouragement. The planner also gives you the power to set a community of support in motion by organizing meals, tasks and other helpful activities.

Advice for the Caregiver
Communicate: Keep communication between you and your loved one open and honest. Understand that he/she will often worry just as much about you as you do about him/her.
Understand: Learn more about the experiences of others diagnosed with breast cancer.
Talk Medicalese: Learn to better communicate with your loved ones health care team. This can be a big help when you accompany your loved one to appointments.

Talking to Your Children About Your Diagnosis

Each child and each family is unique, and helping children cope with a loved one’s diagnosis can present many challenges. However you decide to tell your children, be as open and honest as possible no matter how hard it may seem. You decide how much you want to say. Remember that children, just like adults, will fill in wherever you leave gaps. And because children may not know as much as adults, it is more likely that what they fill the gaps with will be wrong.

Encourage your children to talk to you and to ask questions. Giving honest, realistic answers to their questions will help lessen their fears. If you are going to be gone for a few days, if you are getting sick from the treatment or if you are losing your hair or a breast, let your children know why this is happening. Explain anything that changes their daily routine. It is a good idea to let your children’s teachers know what you are going through — especially for younger children. The teachers may be able to help the children cope if they spend most of the day at school.

Finally, just as your children depend on you, you can depend on them too. They can be, and probably want to be, a source of support for you. They will want to listen to you, hug you, kiss you and spend time with you. Let them.

Learn more: http://ww5.komen.org/BreastCancer/FriendsampFamily.html

Learn more: http://ww5.komen.org/BreastCancer/SupportIntroduction.html

Survivorship: Complementary & Integrative Medicine

Many people use complementary therapies (such as acupuncture and prayer) during or after their breast cancer care to improve quality of life and relieve some side effects of treatment or breast cancer itself. When combined with standard medical care, complementary therapies are often called integrative therapies.

Types of Integrative Therapies

• Natural Products (Herbs, Vitamins, Minerals, etc.)
• Mind & Body Medicines (Meditation, Prayer, Art Therapy, etc.)
• Manipulative & Body-Based Practices (Massage, Chiropractic Medicine, Acupuncture, Reflexology, etc.)
• Movement & Energy Medicine (Reiki, Therapeutic Touch, etc.)
• Whole Medical Systems (Homeopathic Medicine and Naturopathy, Traditional Chinese Medicine and Ayurveda)

Is Complementary Therapy Right for You?

 STEP 1: Talk With Your Health Care Provider

You should never hesitate to bring up to your health care provider issues that can impact your health. Working together, you and your provider can make informed decisions about your health.

STEP 2: Use a Complementary Therapy Only as an Addition to Standard Treatment
Complementary therapies should never be used instead of or apart from standard medical care. Standard cancer treatments have proven benefits. It is not safe to replace standard treatment with less-studied complementary therapies.

STEP 3: Take the Initiative

Learn all you can about complementary therapies. Research safety and effectiveness and note any harmful interactions with standard cancer treatments or other complementary therapies.

STEP 4: Be Wary of Wild Claims

No complementary therapy has been proven to cure cancer. If this claim is made, it is a sign that the product could be unsafe and not effective.

STEP 5: Don’t Equate “Natural” with “Safe”

Natural does not necessarily mean safe.

STEP 6: Choose Reputable Brands

With dietary supplements, there is little guarantee that what is on the label is what is actually inside the bottle. Choose supplements from well-known makers. These will include a “USP verified” stamp on the label.

STEP 7: Choose Licensed Complementary Therapy Practitioners
Visiting a licensed practitioner isn’t a guarantee you will receive good, safe care. Still, a license to practice does show that a provider has passed the requirements in their field.

Questions to Ask Your Doctor about Complementary Therapies

• How do you feel about complementary therapies?
• Have you ever referred someone to a complementary therapy practitioner?
• What’s the best way to find a licensed complementary therapy practitioner?
• I am using these complementary therapies (name therapies). Should I stop using them during and/or after my breast cancer treatment?
• Should I let you know before I start a new complementary therapy? Which therapies should I not use?
• Is this complementary therapy (name therapy) safe? Is there research showing it is safe?
• Are there any side effects with this complementary therapy (name therapy)? If yes, what are they and what should I report to you?
• Are there clinical trials studying this complementary therapy (name therapy)?

Learn more: http://ww5.komen.org/BreastCancer/ComplementaryTherapies.html

Local Impact: Survivorship Services and Genetic Testing

Susan G. Komen Kansas is proud to partner with the Midwest Cancer Alliance (MCA), a network of hospitals and research organizations united to bring leading-edge clinical trials, screening tools and educational opportunities to the region. The University of Kansas Cancer Center has been selected for National Cancer Institute (NCI) designation. NCI designation enhances the long-standing relationship of the Cancer Center with the Midwest Cancer Alliance, providing opportunities to expand research and link new discoveries made in the lab at the University of Kansas to the MCA network of hospitals and health care organizations in an ongoing effort to enhance the quality and delivery of cancer care at all levels.

With more than a dozen members, the Alliance's goals are to:

• provide access to the latest advancements close to home
• advance cancer prevention, early detection, treatment and survivorship
• offer professional education, networking and outreach opportunities

This grant cycle the project will focus on "Enhancing Access to Survivorship Services and Genetic Testing and Counseling". By assessing current survivorship program resources and identify needs among MCA Member sites, the program will assist in identifying  organization program priorities and result in development of an individual organization plan to enhance survivorship services. The program will also facilitate a train the trainer program for specific genetic testing and counseling to increase access to genetic testing services at member sites.

Visit Midwest Cancer Alliance to learn more http://www.kucancercenter.org/cancer-research-and-education/education-resources/midwest-cancer-alliance-programs/#sthash.U2MGxNDN.dpuf

Local Impact: Working Together to Reduce Late Stage Diagnosis in African American Women

She had put it off, she said, because she didn't want to face the possibility of being diagnosed with breast cancer if she had a mammogram. She didn't have time for breast cancer.

Among African-American women in Kansas, while breast cancer incidence rates are lower than those among Caucasian women, 14 percent of those cases are diagnosed in either stage III or stage IV, double the percentage of  stage III or stage IV among Caucasian women.

The grassroots effort, Witness Project of Kansas, got started with Komen Kansas' help, Executive Director Gayle Thomas said, adding that her main concern was not research but helping women who have breast cancer find out about it. Thomas said that breast cancer is not as common in black women as in white women, and because of that and other reasons, black women often don’t talk about breast cancer or get tested. The result is that when they do get breast cancer, it is caught later, and the women often die in their 40s or 50s.

“I’m a small operation but I am 100 percent for women at risk whether they are African-American, English as a second language, or incarcerated.” said Thomas.

The Witness Project is a culturally informed, community-based breast cancer education program. It provides education and outreach programs using African American volunteer cancer survivors and community lay health advisors.  It is designed to effectively increase awareness, knowledge, and motivation, thereby increasing screening and early-detection among African American women, Gayle Thomas works with volunteers in Wichita that go to such places as churches, hair salons and food banks to reach African American women who may not otherwise receive screenings for breast cancer. Most of the volunteers are survivors themselves who deliver lifesaving messages such as:

• Take care of yourself first. Otherwise you won't be any good to your family
• It's important to know one's body and to be your own advocate.
• Ask questions about the tests your doctor orders, ask more questions about the results and treatment options,

This year Komen Kansas has partnered with The Witness Project as they continue to educate African American women by raising awareness in early detection through screening, helping them navigate the heathcare system, and enroll in the Early Detection Works program if needed. Working together we will reach the goal to ultimately lower the continuing rise of the African American breast cancer mortality rate in Kansas.

Read more here: http://www.kansas.com/news/local/article1086107.html#storylink=cpy

Read more here: http://www.kansas.com/living/health-fitness/article1073939.html#storylink=cpy

Read more here: http://www.kansas.com/living/health-fitness/article1073939.html#storylink=cpy

Read more here: http://www.kansas.com/living/health-fitness/article1073939.html#storylink=cpy

Local Impact: Navigating Breast Cancer Care in Western Kansas

“To find the barriers that keep women from getting screened and benefiting from early detection, you have to get out there.” said Nicole Spray, APRN with the HaysMed Breast Care Center (BCC), a grant recipient of Susan G. Komen Kansas.

The partnership with Komen Kansas helps the Hays BCC reach out to women in western Kansas by    providing for a Breast Health Nurse Navigator to enhance breast cancer care. The Nurse Navigator guides patients through each step of the health care system from breast biopsy, diagnosis, treatment to survivorship. By identifying barriers to care such as transportation, financial issues, and language; Ashley Bauck, RN, BSN can help link patients to resources that will help overcome these barriers. Additionally, she helps identify patients who are at high risk for breast cancer and link them with resources to help them manage their increased risk.There are over 820 breast cancer survivors living in the region.  Bauck works to raise awareness of the need for quality survivorship care.

Patients are able to complete routine breast exams and imaging tests at the same location.  In addition the BCC provides risk analysis for women who have not been diagnosed with cancer along with genetic counseling and testing.  Survivors are able to access more in-depth health monitoring and counseling for lifestyle changes such as diet and exercise.  Any side effects resulting from cancer treatment can also be monitored. The partnership with Komen Kansas has allowed for survivorship educational programs, outreach breast awareness programs and a gas card program.

“We are honored to receive Susan G. Komen grant funds”, said Dr. Anne O’Dea, Medical Director of the Breast Care Center. “We feel passionate about providing quality, comprehensive breast services to the women in Western Kansas and are fortunate to have these additional resources to meet the needs for those in our region.”

To learn more about the services http://www.haysmed.com/breast-care-center

Local Impact: Pink Has Become the Color of Hope in Southeast Kansas

Since early detection is so important for survivorship, finding that five counties in southeast Kansas have around 42% of women over 40 reporting they had not had a mammogram in the past 12 months was a red flag for Komen Kansas. By reaching out to partner with the Crawford County Health Department, a grant from Komen Kansas provides funding for local breast cancer support groups, assistance in reducing the financial barriers preventing women from having their annual mammogram, and breast cancer awareness events such as the annual breast cancer awareness candlelight vigil.

“This is the 15th year that Early Detection Works and the Susan G. Komen Kansas have gotten together for this event,” said Shelly Hipfl, southeast Kansas regional nurse for Early Detection Works. She said that the event is designed to raise awareness about breast cancer, celebrate the women who are living with the disease and remember those who are gone.

“Pink has become the color of hope,” said Kelly York, Early Detection Works southeast Kansas regional outreach coordinator.

Fear is one of the biggest things cancer provokes. So courage comes into play for those with breast cancer. It takes courage to take the step to be diagnosed. It takes courage to get out of bed each morning, courage to come in for treatment time after time.  It takes courage to survive.

So by reaching out through events such as health fairs, working with the local high schools, awareness events, support groups, and giving assistance to those in need; Komen's partnership with the Crawford County Health Department is assisting the courageous women of southeast Kansas with the support needed to improve their breast health.

The Crawford County Health Department strives to provide optimal community health services throughout the lifespan with special emphasis on the prevention of disease and the education of persons in their care. For more information on breast health events and screening call 620-231-5411 or visit http://www.crawfordcountykansas.org/cco.nsf/web/Health-Department

• By ANDREW NASH
  THE MORNING SUN
  Morning Sun

  By ANDREW NASH
  THE MORNING SUN
  Posted Oct. 10, 2013 @ 8:56 pm

 

       

Uncle Buck for TV

              

 

Local Impact: Komen Kansas and UMMAM, Bridging the Gap in Southwest Kansas

After the last Community Profile, Seward County was chosen as a target community because of the high percentage of women who reported not receiving a mammogram in the last 12 months (39.9 percent) and it has the highest percentage of Hispanic residents in Kansas (56.6 percent).  Hispanics often face barriers to obtaining mammograms such as language, lack of insurance, and cultural barriers.  These barriers have resulted in Hispanic women being among the lowest screening rates of all racial and ethnic groups.  This has lead, in part, to breast cancer being the leading cause of mortality among Latina women and five-year survival rates for Latina women being among the lowest of any racial or ethnic group.

Just 66% of Hispanic women in Kansas over the age of 50 reported having a mammogram in the past two years. Important barriers such as an inability to speak the language, popular misconceptions about mammography and breast cancer, an inability to afford services or a lack of sufficient autonomy to structure their day so as to access breast health services and screenings all erect barriers between women and better breast health. 

This led Komen Kansas to reach out to a partner in southwest Kansas to help bridge the gap between women needing to be screened and women actually being screened. A strong grassroots approach within each community could create programs that reach out to combat misconceptions about breast cancer and help to facilitate access to screening services. United Methodist Mexican American Ministries (UMMAM) has provided medical and social programs to thousands of people in Southwest Kansas. A non profit service agency, UMMAM serves people of all races, colors and faiths. All UMMAM programs are designed to improve the lives and health status of individuals and families, thus building a stronger community.

With UMMAM as a partner, Komen Kansas grants provide screening mammography and ultrasounds for women under the age of 50 who are medically underserved. UMMAM also provides breast health education outreach and survivor support programs. UMMAM works with Early Detection Works, another Komen Kansas partner to provide screening services. Through this outreach, Komen Kansas and UMMAM hope to bridge the gap between southwest Kansas women and better breast health.

 

 

Local Impact: The Breast Cancer Lady in Geary County

How do you encourage women (and men) to pay attention to their breast health?  According to Erma Patterson, BSN, Health Educator with the Geary County Health Dept., you go to the churches, you go to the beauty shops, and you talk to people at Wal-Mart or Dillons. Patterson said she holds the outreach programs anywhere and everywhere she can.

“I’ve literally walked the streets of Junction City getting the education and information out.” said Patterson.   “The town knows me as the breast cancer lady and that’s okay.”
 

The Geary County Health Department partners with Susan G. Komen Kansas to get the word out regarding breast cancer education. Four years ago the Komen Kansas community profile that showed late stage breast cancer diagnosis in African American women was really high in Geary County.

“What is missing, how do we get the message across?” Patterson asked when discussing how to help African American women understand the need for regular mammograms and breast exams.
Since then Patterson has been working to educate all women in Geary County about breast cancer health and awareness.

Kirsten Bruce, Education and Grants Coordinator for Susan G. Komen Kansas explained that they reached out to the Geary County Health Department about assisting them with providing educational outreach.

“We talked to them about the numbers. Since then Erma has spent the past four years making sure that women have the information that they need to get screenings, and resources to help them get screenings if they don’t have insurance,” said Bruce.

 

Patterson feels the support of Komen Kansas, her administrator and the community.  The Komen grant is providing breast health screenings, mammograms/follow-up referrals, and breast cancer risk education in Geary County. Komen Kansas recently conducted another community profile and Bruce said that the late stage diagnosis numbers have decreased in Geary County.

 

“Geary County did not come up with statistics this year as higher incidents in late stage diagnosis. We haven’t done specific longitudinal research on it but I think, even in those four years, we’ve seen an improvement in the numbers just from the work that Erma has done,” Bruce said.

And Erma Patterson will continue her work to encourage women (and men), young and old to take care of their breast health and to help them navigate the process.

 

“If someone needs information, I’ll be there with my Komen DVD and education materials; whatever needs to be done.”

You can reach Erma Patterson at the Geary County Health Department 785-762-5025 to inquire about breast health education and services. The Geary County Health Department has been serving the Junction City, Geary County and the Fort Riley area since 1949.

Local Impact: Early Detection Works

Breast cancer is the most common cancer among Kansas women. According to the Kansas Cancer Registry and Office of Vital Statistics, around 2,000 Kansas women will be diagnosed with breast cancer each year, with around 400 related deaths. Increasing survival rates depends on early detection through routine mammograms, clinical breast examinations and breast self-examinations. When breast cancer is diagnosed at an early, local stage, five-year survival rates are as high as 97%.

Each year Komen Kansas partners with Early Detection Works (EDW), a program to reduce death from breast and cervical cancer among the women of Kansas by providing education, screening, diagnosis, case management, and referral for cancer treatment. Knowing that early detection can save your life, Komen Kansas makes an impact across the state by helping to make sure underserved Kansas women receive the breast screenings and diagnostic procedures they need.              

 

Currently, over 90 contractors serve the 5 regions in Kansas, and public education coalitions have been established in many Kansas counties. Through these collaborative efforts, EDW has built networks across Kansas to deliver the lifesaving message, "The Best Protection Is Early Detection" to thousands of women. Simply put, you must take care of yourself before you can take care of others.

 

For more information or to inquire about services through Early Detection Works

http://www.kdheks.gov/edw/ks_women.html

or call toll free 1-877-277-1368

Webinar Wednesday: Waking Up Your Sleeping Beauty

Join Susan G. Komen® for our next informative and impactful webinar for National Breast Cancer Awareness Month (#NBCAM):

Waking Up Your Sleeping Beauty

1130AM CT to 1230PM CT | 10.08.2014
Presented by Barbara Musser | Founder of Sexy After Cancer

Register here: https://attendee.gotowebinar.com/register/6172601464891869697

Hosted by the North Central Region of Susan G. Komen

Many women experience challenges to their body image and self-esteem after a breast cancer diagnosis and treatment. It can be a time of downward spiral, but can also be an opportunity to empower yourself. During this webinar we'll explore your relationship with yourself, which is the key to feeling good about your body and yourself after cancer. Join Barbara Musser (author of 'Sexy After Cancer' and respected intimacy and sexuality speaker, educator, coach, and facilitator) to learn how to shift your internal dialog, love yourself, and create a great relationship with you in order to define beauty on your own terms.

Barbara Musser is a respected and inspiring intimacy and sexuality speaker, educator and coach, facilitator and author. She was diagnosed with breast cancer in 1989 as a young single woman. She married and had a child after treatment. Since then, she has worked with thousands of women, couples, and health care professionals, specializing in creating programs to help heal the trauma of cancer treatments to body image, intimacy, sexuality and relationships. She does this with wisdom, humor and grace.

Barbara is the founder and CEO of Sexy After Cancer. She is the author of Sexy After Cancer ~ Meeting Your Inner Aphrodite on the Breast Cancer Journey. She is a member of AASECT, the American Association of Sex Educators, Counselors and Therapists and ISSWSH, the International Society for the Study of Women’s Sexual Health. She writes a weekly Sexy Saturdays blog, and also blogs for Breast Cancer Wellness Magazine, The Women's Survivors Alliance and Breast Cancer Answers. She has contributed chapters to several books.