Excellent comprehensive 60 page guide written for patients about Stage IV Breast Cancer and published by the National Comprehensive Cancer Network (NCCN). Read online, download pdf or order from Amazon.
Metastatic breast cancer information and support for patients, family and friends by long-time advocate and author Musa Mayer.
Message board for metastatic breast cancer postings.
Source for information on brain metastases in breast cancer. The site is organized by Musa Mayer and other advocates working with government researchers.
A non-profit organization dedicated to providing reliable, complete and up-to-date
information about breast cancer. Enter metastatic in the search box for specific information.
www.Cancer.gov /800-4-CANCER / M-F 9am - 4:30 pm EST (English and Spanish)
The National Cancer Institute's comprehensive site for cancer patients to understand types of cancer, clinical trials, statistics, research and available resources.
www.Cancer.net / 888-651-3038 / M-F 8am - 4pm EST
Comprehensive consumer site providing timely, oncologist approved information to help patients make informed health-care decisions. Sponsored by ASCO (American Society of Clinical Oncologists), the site includes cancer overviews, coping, and advocacy.
Ask the Expert from Johns Hopkins. Click on metastatic breast cancer and type in your question.
Living Beyond Breast Cancer (LBBC) is a non profit organization whose mission is to connect breast cancer patients to trusted information and a community of support. From the home page, click on I am living with metastatic breast cancer to find information specific to metastatic disease. LBBC also offers annual conferences, informative webinars and a hotline.
Susan G. Komen has added a section to their website on Metastatic Breast Cancer. click on Understanding Breast Cancer>metastatic breast cancer
This site, sponsored by NBCC, National Breast Cancer Coalition, a national advocacy group, gives information on the latest research, advocacy issues, and the overarching politics and priorities for breast cancer legislation and government funding.
A service of the National Cancer Institute that provides a free database search of over 19 million life science and medical journals for the advanced user who is familiar with medical/scientific terminology and research methods.
National Center for Complementary and Alternative Medicine
A comprehensive site with useful information from the National Institute of Health (NIH) including herbs, A-Z topics, definitions of complementary, alternative and integrative, and how to find a practitioner.
Memorial Sloan Kettering Cancer Center Integrative Medicine
Memorial Sloan Kettering Cancer Center in New York offers a comprehensive site on integrative medicine, including information on therapies, herbs and botanicals and integrative research.
Symptoms, Diagnosis, Treatment, Research - Male Breast Cancer
Online Support Forum - Male Breast Cancer
Federal agency, National Cancer Institute (NCI), provides a detailed summary for each trial listed. If you are intimidated or confused by the search options, their Cancer Information Service is staffed with understanding and knowledgeable cancer information specialists who will search NCI’s list of cancer clinical trials for you; has one of the most complete and up to date lists of cancer clinical trials available. Also shares information on support groups, financial assistance, referral to cancer centers and clinical trials with you.
How to Find a Cancer Treatment Trial: A 10-Step Guide from the National Cancer Institute can be found here: www.cancer.gov/clinicaltrials/education/treatment-trial-guide
• 1-800-422-6237, Monday to Friday, 8am to 8pm ET in English and Spanish. A LiveHelp online chat is also provided Monday to Friday 8am to 11pm ET.
Informative and easy to follow for basic information on clinical trials.A non-profit organization, provides reliable, complete, and up-to-date information about breast cancer, including clinical trials and how to join one. Opportunity to join a “Discussion Board” to share information on latest research and study results. Its stated mission is “to make sense of complex medical and personal information about breast cancer in order to make the best decisions”.
• 610-642-6550, Monday to Friday, 9am-5pm ET.
This site offers a matching service to search for clinical trials that apply to you. You need to enter specific medical information. You can also save this information and they will automatically send you emails for new trials you may be interested in that match your profile.
Call 415-476-5777 (California), or email firstname.lastname@example.org
You need to search by the type of cancer as all cancers are included, and then search by your location.
Provides current information about clinical trials for cancer and other diseases and conditions. A free service of the National Institute of Health developed by the National Library of Medicine. Main difference with the NCI listing above (the first one on this list) is how information is searched and displayed.
There is a feature to create your own profile to "match" you with a trial.
Stated mission is to “Quickly and accurately connect patients with appropriate clinical trial options through personalized education and one-on-one support with Clinical Trial Navigators who identify and fix barriers that might otherwise interfere with enrolling in clinical trials.” The company provides this service free of charge to patients and physicians to raise awareness and facilitate access to clinical trials. With permission, navigators also provide updates when new clinical trials or therapies in development emerge that match the patient’s clinical or genomic profile.
• 1-800-601-8601, 9am to 5pm ET, Monday to Friday.
The focus is Triple Negative. They provide tips for general knowledge and direct you to www.clinicaltrials.gov for details.
• email: email@example.com
Coalition of Cancer Cooperative Groups is a nonprofit organization with the stated goal of “improving patient awareness of cancer clinical trials, facilitating access, and promoting participation. The Coalition offers a variety of programs and information for physicians, patient advocate groups, and patients designed to increase awareness of, and participation in, cancer clinical trials.” The site includes a trial screening questionnaire and a trial lookup.
• 877-520-4457; E-mail: firstname.lastname@example.org
Sarah Cannon Research Institute sponsors oncology clinical trials through its affiliation with clinical oncology practices.
The site separates out clinical trials for metastatic breast cancer as ER+, Her2+, TNBC and first, second or refractory line of treatment.
• 1-877-691-7274, email@example.com
FDA Patient Network:
What Patients Need to Know about clinical trials including types of trials, informed consent, and institutional review board
FDA patient Network that explains other treatment options besides clinical trials such as Expanded Access (compassionate use) and Off-label Use of Approved Drugs.
www.cancerlegalresourcecenter.org / 866-843-2572 / M-F 9am-5pm PST
Joint program of the Disability Rights Legal Center and Loyola Law School in California. Provides free and confidential information and resources through telephone counseling on cancer-related legal issues such as insurance coverage, employment issues, and potential legal problems.
www.patientadvocate.org / 800-532-5274
Patient Advocate Foundation is a non profit founded in 1996 to solve insurance and
health access issues. They offer legal counseling to patients dealing with managed
care, insurance, financial issues, job discrimination, and debt.
Cancer and Careers is a program of the CEW Foundation, the charitable arm of
Cosmetic Executive Women, Inc., a New York-based non-profit trade organization of
4,000 executives in the beauty, cosmetics, fragrance, and related industries. They
offer legal and insurance information and lists of resources to deal with job related
issues including disability. Click on Legal and Insurance Issues.
www.cancerlinc.org / 877-644-5462
Legal Information for Cancer is a non-profit community-based organization, serving the Greater Richmond, Virginia community. They provide education, information, counseling and referral services for legal assistance to individuals with a cancer diagnosis.
If no other resources are available, they assist financially with costs related to wigs, prostheses, lymphedema products and costs of chemo and medications.
Read this handout first: MBCN's TOP 12 TIPS FOR FINDING FINANCIAL HELP
www.211.org or call 211 information
Many communities have a 211 information and referral service funded by The United Way. Find help with food, housing, employment, health care, counseling and more. Available in English and Spanish
American Cancer Society
www.cancer.org / 800-227-2345
Based on your location, assistance is offered to reimburse expenses related to cancer treatment.
www.CancerCare.org / 800-813-HOPE / M-F 8am - 8pm EST
Non-profit organization founded in 1944 offering counseling, support groups, education and financial aid. Avon Cares Program offers limited aid for homecare, childcare and transportation. Linking Arms Program provides limited funds for oral chemo, pain, and anti-nausea medications through Komen funding. Cancer Care provides information on other aid programs. They do not offer funds for basic living expenses. Eligibility is based on assets - defined as savings, CDs, checking, 401K. From the Home page, go to Financial Help > Financial Assistance > pdf application available online to be mailed in.
Cancer Care Co-Payment Assistance Foundation
www.cancercopay.org / 866-552-6729 / M-Th 9am - 7pm; F 9am - 5pm EST
Non-profit foundation affiliated with cancercare.org that specializes in copay assistance since April 2008. They offer full or partial assistance with your copay. You must be insured (private or Medicare) with income less than 4 times the poverty level with consideration for high cost of living areas. You can apply online or on the phone.
CancerFinancial Assistance Coalition
A group of 14 organizations who provide a searchable database of resources available to you based on your diagnosis and zip code. Enter both and get a list of organizations that can potentially help you, incluing those local to your state or area.
Cancer Fund of America
www.cfoa.org / 800-578-5284
A physician must certify your diagnosis and financial need for assistance with costs
of medical supplies and products.
Genevieve's Helping Hand
Offers small financial grants to be used by young breast cancer patients (under age 40) to extend their recuperation period after cancer related surgeries and procedures.
Government Benefits Screening
An online tool which informs citizens of benefits they may be eligible for, including information on how to apply for assistance. On the home page, click the Start Benefit Finder button to take a quick questionnaire which will provide you with potential benefits. You do not need to provide your name or any other personal identifying information. There is also a Search box on the home page if you prefer to target a specific program or benefit. This site does not restrict search results very well so you may get more assistance programs than you are eligible for and/or interested in, so some careful analysis of the results may be necessary.
The Health Well Foundation
www.healthwellfoundation.org / 800-675-8416 / M-F 9am - 5pm EST
A non-profit organization that reduces financial barriers to care for underinsured patients with chronic or life-threatening diseases. They provide financial assistance to eligible individuals to cover coinsurance, copayments, health care premiums and deductibles for certain medications and therapies. To see if you qualify and if there is funding available click on the Get Assistance Now button on the home page or call for help with the application process. If no current funding is open for breast cancer, check back throughout the year as more funding may become available.
Help Now Fund
Provides emergency financial assistance to help people in active treatment with their rent and utilities. No phone number available to call. The website provides an email to direct questions to if necessary.
Medicaid Benefits by State (Kaiser Family Foundation)
Medicaid benefits database--look up available benefits by state.
National Cancer Institute
www.cancer.gov / 800-4-CANCER (226237) / M-F 8am-8pm EST
Government cancer research agency created in 1937; mission expanded in 1971 to include cancer information dissemination, including financial, insurance and legal information. All information is available directly on the website, by speaking with someone on the telephone, using email or having a 'Live Help Online Chat' session with an NCI cancer specialist. For easy access to any of these options, start on the Home page and click on ’We Can Answer Your Questions’ near the bottom left of the page.
National Council on the Aging (55 yrs and older)
www.BenefitsCheckUp.org / 202-479-1200
Non-profit organization formed in the 1950's to serve and advocate for older Americans. This comprehensive web-based service screens for benefits programs for seniors with limited income and resources. Their services include finding comprehensive benefits, prescription drug assistance, and medicare prescription drug assistance. You need to click on one of the three links and answer the questions to receive an on-screen list of recommendations for benefit assistance.
www.needymeds.com / HELPLINE: 800-503-6897 M-F 9am-5pm EST
Non-profit organization founded in 1997. They provide information on medicine and health care assistance programs. They do not provide direct aid. They offer information on Patient Assistance Programs run by pharmaceutical companies and show a listing of free clinics and other government assistance programs. On the Home Page click on ‘Getting Started’ -> ‘Welcome New Users’ and answer the appropriate questions for your needs.
Patient Access Network Foundation
www.panfoundation.org / 866-316-7263 M-F 8am-5pm EST
For those eligible, financial assistance is offered for co-pays, deductibles and medications.
Patient Advocate Foundation on CoPay Relief
www.copays.org / 866-512-3861 / M-F 8:30am - 5pm EST
Non-profit organization providing assistance with copays for prescription drugs based on financial eligibility and monthly disease fund availability. You must be insured (private or Medicare). Eligibility is on a case-by-case basis. You can complete the application online from the Home page (click on Start The Application Process) or by calling a counselor at the toll free number.
Patient Advocate Foundation
www.patientadvocate.org/report.php / 800-532-5274
They solve insurance and healthcare accesss problems. The National Financial Resource Guidebook for Patients is a state-by-state directory of information for patients seeking financial relief for a broad range of needs.
Partnership for Prescription Assistance
www.pparx.org / 888-477-2669 / M-F 8am - 9pm EST
This organization, sponsored by the pharmaceutical companies, is a single point of contact for drug assistance programs. They recommend programs and you can download the application, or have it sent to you by mail. This service is for those who are uninsured for prescriptions. Income eligibility limits vary by drug and program.
Patient Services Incorporated
www.uneedpsi.org / 800-366-7741
Based on availability of funding, PSI offers assistance in obtaining health insurance
coverage and ways to satisfy various copays. Their current program covers bone metastases - not breast cancer.
The Pink Fund
http://www.thepinkfund.org/ 877-234-PINK (7465)
Short term financial aid during treatment.
www.rxoutreach.com / 800-769-3880
For those who financially qualify, they offer a 90-day supply of prescription medications for $20 - $40, regardless of the number of pills in the prescription.
Social Security Disability (SSDI)
Stage IV cancer automatically qualifies you for disability and expedited processing of your application under the compassionate allowances program--a diagnosis that is terminal. See http://www.ssa.gov/compassionateallowances/. You have to have a work history and cannot currently be earning more than $1000 month. There are also benefits for your dependents and you become eligible for Medicare after a 2 year waiting period from the date of your eligibility. To apply click here.
American Cancer Society Hope Lodge / 800-227-2345
The site provides info on free temporary housing when in treatment in another city, for patients and their caregivers. Includes which cities have a Hope Lodge. Eligibility requirements vary by location.
Hospitality Homes / 888-595-4678
This organization provides info on free, no-cost, short-term housing in private homes of host volunteers for families and friends of patients when they travel to the Boston area for patient care. Temporary housing for the patient is determined on a case-by-case basis.
Joe's House / 877-563-7468
This online service helps patients and their families find lodging options near treatment centers. They partner with hotels that offer discounted rates to patients when they travel for treatment. (Note:If you call, the phone is answered by Cancer Support Community, which allows Joe's House to use their phone number and refers callers as needed.)
Nat. Assoc. of Hospital Hospitality Houses / 800-542-9730
This site includes nearly 200 organizations across the country that provide lodging and support services to patients and their families while receiving medical treatment away from their home communities. The cost of accommodations at member facilities varies from free to reduced cost. Click on FIND LODGING to view availability in the city and state of choice.
www.cancer.org / 800-227-2345
Road To Recovery is a program sponsored by the American Cancer Society to provide transportation for cancer patients to and from treatment, according to the needs and available resources in each community. Volunteer drivers donate their time and use of their cars. Call or go online to check availability in your area.
www.corpangelnetwork.org / 866-328-1313
Charitable organization whose mission is to ease the emotional stress, physical discomfort, and financial burden of travel for cancer patients by arranging free flights to treatment centers, using empty seats on corporate aircraft. You must be able to walk unassisted. Financial need is not a requirement. Call or email at least 3 weeks in advance.
www.lifelinepilots.org / 800-822-7972 7:30am - 4:30pm CST
Midwest non-profit group that flies financially needy patients to medical centers. Patients must be able to walk unassisted and require no medical assistance in flight; must be financially needy; able to fly in small 4-6 passenger plane. You need to provide your own transportation to the airport.
www.patienttravel.org / 800-296-1217 (contact available after hours)
Free referral service to facilitate patient access to appropriate charitable medical air transportation as well as long distance ground transportation resources in the U.S.
www.aircharitynetwork.org / 877-621-7177
Network of angel flights organizations that provide free air transportation for financially needy patients. Patients must be able to walk unassisted and require no medical assistance in flight; must be financially needy; able to fly in small 4-6 passenger plane; provide your own transportation to the airport. This network includes www.angelflight.com .
When you go to the website of each organization, you can call the phone number
or click on the CONTACT US button to request a brochure.
MBCN / 888-500-0370/ Metastatic Breast Cancer Diagnosis Brochure
Cure / 214-367-3306 / magazine for cancer patients; includes all cancers
Willow (in Canada) / 888-778-3100 / Living With Metatatic Breast Cancer (brochure)
LBBC /888-753-5222/Understanding Treatment Options for Advanced Breast Cancer (brochure)
The Wellness Community - Frankly Speaking About Advanced Breast Cancer (brochure & DVD)
Young Survival Coalition / 877-YSC-1011/ The Beautiful 8 (DVD)
Breast Cancer Org - Understanding Metastatic Breast Cancer (brochure)
Bone and Cancer Foundation - PDFs on breast cancer and bone metastases, Vitamin D, pain, and surgery.
Breast Cancer Options www.breastcanceroptions.org
ph: 845/339-HOPE (4673)
Contact: Hope Nemiroff
Metastatic Breast Cancer Retreat: Breast Cancer Options began this free retreat because there are few resources and services for women with advanced breast cancer. Participants are in a welcoming supportive environment where they find understanding and support. The retreat offers an opportunity to look at the issues surrounding their breast cancer, gather information, and move beyond an intellectual understanding of the disease. It is usually offered in the Fall.
Breast Cancer Recovery www.bcrecovery.org
call (888) 821-1140 or email Breast Cancer Recovery today at firstname.lastname@example.org .
The Infinite Boundaries metastatic breast cancer retreats are held at Sundara Inn and Spa in Wisconsin Dells, Wisconsin. Participants enjoy guided discussions about issues specific to women with metastatic breast cancer, including dealing with difficult feelings, communicating with friends and family and living with advanced breast cancer. Women learn practices to decrease stress and explore new creative outlets. Retreaats usually offered in May, September and November. See 2015 schedule
Free Cleaning Service
Yes... they really will clean your house for free - once a month for 4 months! You must submit proof of medical diagnosis.
The Jack & Jill Late Stage Cancer Foundation helps you create travel memories for families with children. Patients must be referred by their oncologist.
Personalized Web Page
www.caringbridge.org / 651-789-2300
Free internet service with a personalized web page for you to post your info and provide updates for friends without having to make phone calls or send individual emails. It is available 24/7.
www.lotsahelpinghands.com/ Contact us at email@example.com
Free, private, web-based communities for organizing friends, family, and colleagues - your ‘circles of community' - during times of need. Easily coordinate activities and manage volunteers with our intuitive group calendar. Answers the question: What can I do to help?
Offers professional counseling (in person or over the telephone), support groups, educational programs (past programs can be heard on their website) and practical help. Call (800) 813-HOPE to learn more or order their pamphlet "Caregiving for your Loved One with Cancer".
Caring Bridge Personalized Web Page
Free internet service with a personalized web page for you to post your info and provide updates for friends without having to make phone calls or send individual emails. It is available 24/7.
For Customer support, M-F 8-5pm CST. 651-789-2300
Lotsa Helping Hands - Aid for all who ask How Can I Help?
Free, private, web-based communities for organizing friends, family, and colleagues - your ‘circles of community' - during times of need. Easily coordinate activities and manage volunteers with an intuitive group calendar. Answers the question: What can I do to help? Contact: firstname.lastname@example.org
For husbands and partners, information on coping and emotional support including an article on what to do in the first 48 hours after learning the diagnosis.
Helpful articles on caregiver challenges and financial and legal planning.
Blog review of children's book The Cancer That Wouldn't Go Away by Hadassa Field
Family Medical Leave Act
The FMLA entitles eligible employees of covered employers to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave.
Articles of interest: