This June Celebrate Survivors

The first Sunday of June was National Cancer Survivors Day, an annual celebration that is held in hundreds of communities nationwide. This day provides an opportunity to draw attention to the ongoing challenges of cancer survivorship in order to promote more resources, research, and survivor-friendly legislation to improve cancer survivors’ quality of life. With 3 million breast cancer survivors and growing, Susan G. Komen is investing in survivorship to improve quality of life eveeryday.

After surviving breast cancer, most find that "normal" is usually not what it was before, in fact many call it finding their "new normal". We all work through things in different ways. Sometimes the hardest issue is dealing with the anxiety that the cancer will return. Developing a plan and a philosophy around this fear is a major step in finding your "new normal".

There are many steps you can take to improve the chance of staying healthy. The first is to fully understand your prognosis for recurrence, the potential long term side effects of your treatment, and associated options for follow-up. Keep a regular schedule of wellness visits.The fact is the primary cause of death in women who have had breast cancer is not cancer; it's heart disease. So working toward a healthy lifestyle of a balanced diet, a healthy weight, exercising regularly, not smoking and getting enough sleep, while not a guarantee, is a positive step for life beyond breast cancer.

Successfully negotiating survivorship takes courage, humor, and a healthy dose of patience; starting with some realistic expectations. The first year the body is in repair mode, you are getting use to the longer-term physical effects of treatment, and dealing with post treatment anxieties. And after facing a life challenge, you may find your "before" life goals no longer fit. Life beyond breast cancer is different and getting used to whatever it will be takes awhile.

For more information

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