Metastatic Breast Cancer

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Look inside for details on accessing alternative options Vocabulary to Know Options to Access Alternative and Emerging Treatment Options Helpful Resources and Federal Adjuvant Therapy: workplace Researchers today are discovering A clinical trial may require travel so it This option allows patients access to Advanced BC.org National Cancer Institute Treatment given after removing protections. new treatment options that target specific is important to consider transportation, effective investigational drugs that are in www.advancedbc.org www.cancer.gov the cancer with surgery. genetic changes in cancer cells. These lodging and food expenses. Some clinical Phase 3 or beyond of the clinical trial stage. www.cancer.gov/clinicaltrails BC Mets.org BRCA: new protocols can provide you and your trials will cover those expenses but only if Although these treatment options may not www.bcmets.org Breast Cancer susceptibility genes physician the ability to customize treatment requested by the patient. If you are working yet have been approved by the Food and National Underinsured make proteins that help control cell based on your unique tumor type and while accessing treatment via clinical Drug Administration, to access, there must Resource Directory Breast Cancer Trials growth. If you have a family history genetic mutations. This method has also trials, consider activating any workplace be reasonable evidence that the risk of www.patientadvocate.org/ Metastatic Breast www.breastcancertrials.org of breast or ovarian cancer genetic been found to reduce exposure to ineffective protections you may be eligible for, the drug is not greater than the risk from underinsured or less effective treatment protocols. including protected leave under the Family the disease and that the drug will prolong testing can identify your chances of BreastCancer.org Medical & Leave Act and applying for short- survival or improve your quality of life. Nueva Vida developing those cancers. www.breastcancer.org Cancer Guide Clinical Trials – Clinical trials offer the and long-term Disability benefits to protect www.nueva-vida.org ability to access an emerging treatment In this situation, your insurance may not Estrogen Receptor: your income during extended absences Cancer and Careers option otherwise unavailable outside of cover the cost of the treatment or drugs to Patient Resources, Inc. A protein found inside some from work. www.cancerandcareers.org www.patientresource.com/ cancer cells that is stimulated by the trial. Clinical trials are conducted in address any side effects. You may find it Metastatic_Breast.aspx the hormone estrogen and is a series of steps, called phases and many Accessing Investigational Drugs - If you helpful to discuss treatment options and Cancer Care dependent upon estrogen to times contain medication that has shown do not qualify for a clinical trial, you may financial obligations with your insurance www.cancercare.org Pink Link Breast Cancer grow. Also called ER. promising results in research. consider requesting treatment through an company or case manager if considering Social Network “Expanded Access” program (also known an Expanded Access program. Cancer Connect www.pink-link.org Expanded Access: as “compassionate use”). www.cancerconnect.org A program started by the FDA Caring for Your Emotional Side Breast cancer can happen to anyone, This guide delivers expert advice specifically for Metastatic Breast Cancer SHARE that allows certain promising Cancer Support Community regardless of whether they are old or www.sharecancersupport.org earning that you have metastatic breast cancer can patients to help avoid common insurance and care barriers. investigational therapies to be made www.cancersupportcommunity.org young, male or female, or whether be an overwhelming experience – one that leaves you available to people with serious or or not they have high or low risk Sharsheret feeling numb, frightened, vulnerable and alone even life-threatening illnesses without FORCE: Facing Our Risk of L factors. Breast cancer is considered Genetic and Genomic Testing www.sharsheret.org when you are surrounded by family and friends. other treatment options, before Cancer Empowered Metastatic, or Stage 4, when there is ncorporating knowledge specific your risk for developing a particular disease treatment found effective against reducing www.facingourrisk.org being formally approved for use. Sisters’ Network This is a time where you need to put yourself first. evidence cancer cells have spread to Engaging With Your Medical Team to the individual genetic makeup or type of cancer. This analysis of your or killing that cellular behavior. Many times www.sistersnetworkinc.org Metastatic breast cancer is treatable even if not curable. areas outside the breast or nearby Food and Drug in your body as well as your exact individual DNA can detect inheritable genes genomic testing also identifies ineffective Know Your Breast Cancer I Become informed about all of your treatment options, lymph nodes. Metastatic breast hen faced with a metastatic breast • Ask your provider to show you diagrams Administration (FDA): cancer as part of your treatment plan and chromosomes that have been found treatment options that can be avoided www.knowyourbreastcancer.com Susan G. Komen and have a clear head when you are making decisions cancer patients are likely to have cancer diagnosis or a recurrence or drawings that may help increase An agency in the federal can be highly beneficial and lend itself to be linked to a higher risk for hereditary by your doctor. Talk to your insurance ww5.komen.org regarding how you want to proceed. symptoms that affect other organs of breast cancer, there are many your understanding. government responsible for Lazarex Cancer Foundation W to more informed and targeted decisions disorders. For example, a defective BRCA company for coverage details about whether of the body, including the bones, aspects to consider during your wellness www.lazarex.org ensuring drugs, medical devices, on care. This concept, called “personalized (breast cancer) gene increases the odds that your plan will cover genomic testing related Triple Negative Breast Learn more about your treatment team by It’s important to know that feeling stressed and anxious is lungs, liver or brain, where the journey, such as available treatment options and equipment are safe for use in medicine” is a rapidly developing field of you will be susceptible to breast or ovarian to your breast cancer. If your insurance Cancer Foundation asking the following questions: Living Beyond Breast Cancer normal. Talking to someone may be the first step in helping cancer cells grow and multiply. and utilizing a proactive strategy to reduce the United States. treatment within the cancer community. cancer over the course of your life. Genetic company will not cover the testing, reach www.tnbcfoundation.org How many metastatic breast cancer patients www.lbbc.org you live well with metastatic breast cancer. You may feel insurance barriers. • The “Genetic” and “Genomic” terms are very testing can be done on patients of all ages out to the manufacturer of the test to Metastatic breast cancer patients do you treat each year? like you should stay strong but it is also important for you to Gene Therapies: similar but actually refer to different types or who do not show any signs of illness. If a inquire about the availability of financial Triple Step Toward The Cure along with their caregivers face As a metastatic patient, you will likely Therapies that alter the genetic Men Against Breast Cancer find people who have experience in what you are facing, can • What has been your experience with the of information. gene mutation is positively identified, it does assistance to help cover the cost. www.triplesteptowardthecure.org complex medical situations with start to hear numerous new medical and structure of a tumor cell, making www.menagainstbreastcancer.org comfort you and are available to share their story. Trying to results of this treatment? not mean that the patient will definitely be accompanying financial challenges, technical clinical terms. To help make them more susceptible to either the Young Survival Coalition carry this burden alone while pretending everything is fine is sense of your situation, consider these tips How will my treatment affect my affected by the condition. Metastatic Breast intricate treatment decisions, long- • immune system or chemotherapy. www.youngsurvival.org not a good idea and can impact your overall health. when discussing your treatment: daily activities? Cancer Network term workplace and employment Under provisions Biomarker Testing may be completed concerns and many other unique Hormonal Therapy: www.mbcn.org Be honest with your treatment team about any emotional • Write down your questions before your visit. • How do you stay up to date on the latest of the Affordable Care Act, with genetic testing. Biomarkers refer to issues. While metastatic breast Treatment that adds, blocks, or strains and how you are feeling, as there may be support List the most important ones first to ensure treatment options and medical advances? new health plans are required the molecules found in all blood or tissues METAvivor cancer cannot be cured, it can be they are answered, and write down the removes hormones. To slow or services directly provided by your cancer treatment center • Do you enroll patients into clinical trials to pay for genetic counseling and that can be measured to indicate an www.metavivor.org treated and managed allowing the answers in case you forget. stop the growth of breast cancer, and available to help you and your family members. Another should I want to participate in one? and genetic testing for women abnormal condition or disease. Depending patient many quality years of life synthetic hormones or other drugs option is to take advantage of counseling benefits available • If you don’t understand what the healthcare on the specific biomarker, this genetic My BC Team ahead. This guide is designed to • Who do you recommend I see for a may be given to interfere with who have a demonstrated through your insurance plan, as this may be a way to express team is recommending, ask to speak with an testing can be used to identify risk of www.mbcnetwork.org provide practical advice to patients second opinion? the body’s ability to stimulate the high risk of having the yourself without feeling a burden of sharing with those oncology nurse to discuss your concerns. a disease, early detection through and their loved ones as they live with growth of breast cancer cells. BRCA gene. affected personally by your diagnosis. And lastly, there are • Would you consider having genomic testing screening or even help diagnosis a • Consider electronically recording the visit so many cancer organizations that offer emotional support, a metastatic breast cancer diagnosis. done on my tumor? specific cancer type. you or a family member can refer to it later. Human Epidermal Growth Factor including in-person support groups, one-on-one 24/7 phone

Government Benefits that May be Hard to Face Monoclonal Antibody: Social Security Disability Maintaining comfort and trust in Legal paperwork relevant to patients A type of protein made in a Insurance (SSDI) laboratory to bind to a particular your medical team Advanced Directives, also known as living substance in the body, including It is important to be comfortable when wills, are a set of written instructions that mmediately upon diagnosis of cancer cells. They can be used speaking with your healthcare team. If communicates your treatment preferences metastatic breast cancer (stage IV), alone or to carry drugs, toxins or you are not getting the information you to your healthcare team and family Iyou are eligible to apply for disability radioactive materials directly to need, you dislike the doctor, your doctor members in a situation where you are benefits under the Compassionate cancer cells. Allowances program. The program is is in an inconvenient location or you are incapable of making the decision. This intended to expedite the processing not satisfied with what you are being assures that your wishes are carried out Mutation: of Social Security Disability Insurance told, you may want to consider finding and relieves some of the decision-making Any change in the DNA sequence (SSDI) and Supplemental Security a new physician. The doctor-patient burden from your loved ones. You do not of a cell. Mutations can be harmful, Income (SSI) claims for applicants relationship has been shown to be critical need to have an advanced directive to beneficial or have no effect. Certain whose medical conditions are so severe to overall patient outcomes, so do not feel authorize a “do not resuscitate” (DNR) order mutations may lead to cancer or that their conditions are known to awkward or embarrassed if you want to in your medical record, but you will need to other diseases. meet the Social Security’s definition of Federal Workplace Protections Critical to seek another provider. make this known to your medical providers

disability. Decisions are usually expedited in order for it to be documented. Progesterone Receptor: Employed Metastatic Breast Cancer Patients A protein found inside some depending on how quickly you submit Discussing costs with your doctor Power of Attorney is a document that cancer cells that are dependent the requested information and medical The Family and Medical Leave Act breast cancer patients and provides an If you find it challenging to pay for your gives someone the authority to handle all on progesterone to grow. Also documentation arrives from your doctor. (FMLA) exists to help patients maintain avenue to request accommodations treatment, discuss financial concerns financial, legal and/or health affairs if you called PR. employment and employer-based health that support your ability to remain in with your treatment team. Being honest are unable to do it for yourself. You need to In most cases, after 24 months of insurance benefits while being treated the workforce. about any anxiety related to cost with trust the person you select is both able and Relapse or Recurrence: receiving SSDI benefits, you are eligible for serious illness. This protection allows Potential Insurance Understanding Treatment Options your doctor may open up a dialogue that willing to perform these duties during these A return of cancer after for Medicare insurance benefits you to take up to 12 weeks of unpaid leave Under the ADA law, employers cannot ultimately allows you to connect with critical and emotional times. Be sure that Inquire about out-of-pocket responsibilities treatment or after a period of Complications ost treatment for metastatic Hormone Therapy – prevents cancer regardless of age. from work related to your diagnosis and inquire whether you have cancer or any additional options. you discuss your wishes with them in detail before you agree to receive services. time during which the cancer breast cancer works to prevent cells from receiving estrogen, thus be eligible to return to work. You must other medical condition upon interview Compassionate Allowance speeds the and alert them of this documentation so that Palliative is distinctly different than hospice cannot be detected. with Chemotherapy or slow the disease progression halting their growth. This is usually provide documentation from a physician or during the hiring process. ADA also M There are financial assistance programs care, although it is frequently confused with application and disability designation; they are prepared to execute your choices. while easing symptoms and managing the first treatment option for hormone that supports the request for leave and protects your privacy if you do share your available to assist with your medication and other end-of-life services. Targeted Therapy: Many new medications are however, even when found disabled by medical information at a later point to treatment side effects. There are several receptor-positive patients. provide this to your employer. Once treatment co-payments through nonprofit A type of treatment that uses drugs available orally offering the SSDI, you will not begin to receive your your employer, as your employer may You can also designate a Medical Power forms of treatment for metastatic breast approved, leave can be taken in one large organizations or through your medication’s Hospice Care is available to those whose and antibodies to attack specific patient the option for Targeted Therapy – designed to attack disability checks until the beginning of not share this information with of Attorney to someone to make medical cancer patients. Your treatment history block, or a few hours at a time. FMLA is manufacturer. If you are employed, you life expectancy is six months or less. Hospice types of cancer cells with less harm home-centered treatment. a certain molecular agent or pathway the sixth month after your disability date. unauthorized colleagues. decisions for you without giving them and response to therapy will determine calculated and recorded annually and may be able to recover some costs through care focuses on maintaining comfort when to normal cells. Some targeted However, for treatment such as responsible for cancer development. the authority to handle your financial the type of treatment your doctor can be renewed the following year if a a flexible savings or health savings account there are no curative treatments available therapy blocks the action of chemotherapy, which is offered Supplemental Security Income (SSI) Once employed, the ADA also allows or legal affairs. may recommend. qualifying medical condition continues. that can accompany your health insurance certain enzymes, proteins or other Radiation Therapy – targets the tumor patients the right to request an or when you make the personal choice not both with intravenous infusion SSI is a separate governmental program plan. You may also find a list of grant or These distinctions are relevant during the to continue treatment. Care is available molecules involved in the growth and oral pills, each form may be to kill the cancer cells and can provide accommodation related to your treatment. that provides benefits to people who are It is important to know that not all financial assistance programs on breast and spread of cancer cells. These relief from the pain associated with Examples of reasonable accommodations period you are receiving medical care. at home or in a care facility. Hospice staff categorized differently by the disabled and have very little income and employers are required by law to cancer support websites that can help. Unless otherwise documented, these powers members are there to support you and your treatments can be given alone or in insurance company. For example, If you have the cancer. include the ability to take periodic breaks assets. SSI provides monthly payments offer FMLA leave. Consult with your combination with chemotherapy. or have access to a private area to take will expire at the time of your death and will family members with your preferred end- intravenous chemotherapy is been diagnosed with to low-income individuals who do not human resources department about Chemotherapy – treatment that attacks medication, the ability to have a modified not carry over to allow decisions related to of-life care. Hospice teams provide medical normally covered under the metastatic breast cancer, qualify for SSDI because they have either your company policy. all cells indiscriminately in the hope of your estate and burial. care, emotional support and spiritual Triple Negative: medical benefit of your insurance work schedule or shift change, the call your insurance reducing the growth of rapidly dividing never worked or who have insufficient resources to people in the last stages of This cancer tests negative for plan, while oral medications are Employers have the right to require that ability to leave for doctors appointments, company and enroll in a cancer cells. Available intravenously credits on their earnings record. If you a terminal illness. Hospice benefits are estrogen, progesterone and the you use any available paid vacation and permission to work from home, modified Beyond active treatment covered through the prescription case management program. qualify for SSI benefits in most states, you HER2 protein. These tumors are or via pill form, this treatment can be work environment temperature or available under most insurance policies. benefit of your insurance plan. If are also eligible for Medicaid benefits. sick time before you are allowed to take The goal of Palliative Care is to focus on not responsive to current targeted Charged with coordinating prescribed alone or in combination with permission to use work telephone to call The hospice benefit usually includes all you are prescribed the oral form, unpaid FMLA leave. When you return to quality of life during long-term medical therapies, although they usually your care, case managers other treatment. doctors and coordinate care. services, medications and equipment this means you are responsible for work, your employer must return you to care. Palliative care can be given alongside respond well to chemotherapy. bridge the gap between you, necessary to treat the hospice diagnosis. your drug pharmacy co-pay before Surgery – a provider manually removes your original position or an equivalent any other forms of active treatment you your medical providers and If you have exhausted the 12 weeks of you can pick up your prescription. the tumor and its surrounding tissue job with the same pay, benefits and other are receiving to treat your cancer, and be Tumor Response: the insurance company, leave allowed under FMLA, and you are from your body. Two types of common employment terms. relevant at any point in your treatment The shrinking of a tumor If you and your oncologist tackling any healthcare not yet ready to return to work, ADA Breast cancer can happen to breast cancer surgery are called journey. The palliative care team helps following treatment. determine that oral chemotherapy FMLA also protects caregivers and family provides another avenue to request anyone, regardless of whether roadblocks you “lumpectomy” and “mastectomy.” manage symptoms or side effects you may is your best treatment option, you members who assist you during your extended leave as an accommodation. they are old or young, male or may encounter. Surgery is frequently no longer a encounter during treatment. may find it challenging to afford journey, and provides them the option viable treatment option alone during Additional provisions specific to cancer female, or have high or low the high out-of-pocket expenses. for protected leave to support you during Palliative care may be covered under the the metastatic stage because the cancer Request the PAF guide on patients may be found at the Equal risk factors. Explore co-payment assistance your medical journey. hospice benefit, standard medical benefits has spread beyond the confines of Maintaining Eligibility for Insurance Employment Opportunity Commission programs or other financial of your insurance plan, or contained within the breast. for more information on The Americans with Disabilities Act website: http://www.eeoc.gov/laws/types/ assistance options. long-term care insurance plans. benefits and protections. (ADA) protects the privacy of metastatic cancer.cfm. Look inside for details on accessing alternative options Vocabulary to Know Options to Access Alternative and Emerging Treatment Options Helpful Resources and Federal Adjuvant Therapy: workplace Researchers today are discovering A clinical trial may require travel so it This option allows patients access to Advanced BC.org National Cancer Institute Treatment given after removing protections. new treatment options that target specific is important to consider transportation, effective investigational drugs that are in www.advancedbc.org www.cancer.gov the cancer with surgery. genetic changes in cancer cells. These lodging and food expenses. Some clinical Phase 3 or beyond of the clinical trial stage. www.cancer.gov/clinicaltrails BC Mets.org BRCA: new protocols can provide you and your trials will cover those expenses but only if Although these treatment options may not www.bcmets.org Breast Cancer susceptibility genes physician the ability to customize treatment requested by the patient. If you are working yet have been approved by the Food and National Underinsured make proteins that help control cell based on your unique tumor type and while accessing treatment via clinical Drug Administration, to access, there must Resource Directory Breast Cancer Trials growth. If you have a family history genetic mutations. This method has also trials, consider activating any workplace be reasonable evidence that the risk of www.patientadvocate.org/ Metastatic Breast www.breastcancertrials.org of breast or ovarian cancer genetic been found to reduce exposure to ineffective protections you may be eligible for, the drug is not greater than the risk from underinsured or less effective treatment protocols. including protected leave under the Family the disease and that the drug will prolong testing can identify your chances of BreastCancer.org Medical & Leave Act and applying for short- survival or improve your quality of life. Nueva Vida developing those cancers. www.breastcancer.org Cancer Guide Clinical Trials – Clinical trials offer the and long-term Disability benefits to protect www.nueva-vida.org ability to access an emerging treatment In this situation, your insurance may not Estrogen Receptor: your income during extended absences Cancer and Careers option otherwise unavailable outside of cover the cost of the treatment or drugs to Patient Resources, Inc. A protein found inside some from work. www.cancerandcareers.org www.patientresource.com/ cancer cells that is stimulated by the trial. Clinical trials are conducted in address any side effects. You may find it Metastatic_Breast.aspx the hormone estrogen and is a series of steps, called phases and many Accessing Investigational Drugs - If you helpful to discuss treatment options and Cancer Care dependent upon estrogen to times contain medication that has shown do not qualify for a clinical trial, you may financial obligations with your insurance www.cancercare.org Pink Link Breast Cancer grow. Also called ER. promising results in research. consider requesting treatment through an company or case manager if considering Social Network “Expanded Access” program (also known an Expanded Access program. Cancer Connect www.pink-link.org Expanded Access: as “compassionate use”). www.cancerconnect.org A program started by the FDA Caring for Your Emotional Side Breast cancer can happen to anyone, This guide delivers expert advice specifically for Metastatic Breast Cancer SHARE that allows certain promising Cancer Support Community regardless of whether they are old or www.sharecancersupport.org earning that you have metastatic breast cancer can patients to help avoid common insurance and care barriers. investigational therapies to be made www.cancersupportcommunity.org young, male or female, or whether be an overwhelming experience – one that leaves you available to people with serious or or not they have high or low risk Sharsheret feeling numb, frightened, vulnerable and alone even life-threatening illnesses without FORCE: Facing Our Risk of L factors. Breast cancer is considered Genetic and Genomic Testing www.sharsheret.org when you are surrounded by family and friends. other treatment options, before Cancer Empowered Metastatic, or Stage 4, when there is ncorporating knowledge specific your risk for developing a particular disease treatment found effective against reducing www.facingourrisk.org being formally approved for use. Sisters’ Network This is a time where you need to put yourself first. evidence cancer cells have spread to Engaging With Your Medical Team to the individual genetic makeup or type of cancer. This analysis of your or killing that cellular behavior. Many times www.sistersnetworkinc.org Metastatic breast cancer is treatable even if not curable. areas outside the breast or nearby Food and Drug in your body as well as your exact individual DNA can detect inheritable genes genomic testing also identifies ineffective Know Your Breast Cancer I Become informed about all of your treatment options, lymph nodes. Metastatic breast hen faced with a metastatic breast • Ask your provider to show you diagrams Administration (FDA): cancer as part of your treatment plan and chromosomes that have been found treatment options that can be avoided www.knowyourbreastcancer.com Susan G. Komen and have a clear head when you are making decisions cancer patients are likely to have cancer diagnosis or a recurrence or drawings that may help increase An agency in the federal can be highly beneficial and lend itself to be linked to a higher risk for hereditary by your doctor. Talk to your insurance ww5.komen.org regarding how you want to proceed. symptoms that affect other organs of breast cancer, there are many your understanding. government responsible for Lazarex Cancer Foundation W to more informed and targeted decisions disorders. For example, a defective BRCA company for coverage details about whether of the body, including the bones, aspects to consider during your wellness www.lazarex.org ensuring drugs, medical devices, on care. This concept, called “personalized (breast cancer) gene increases the odds that your plan will cover genomic testing related Triple Negative Breast Learn more about your treatment team by It’s important to know that feeling stressed and anxious is lungs, liver or brain, where the journey, such as available treatment options and equipment are safe for use in medicine” is a rapidly developing field of you will be susceptible to breast or ovarian to your breast cancer. If your insurance Cancer Foundation asking the following questions: Living Beyond Breast Cancer normal. Talking to someone may be the first step in helping cancer cells grow and multiply. and utilizing a proactive strategy to reduce the United States. treatment within the cancer community. cancer over the course of your life. Genetic company will not cover the testing, reach www.tnbcfoundation.org How many metastatic breast cancer patients www.lbbc.org you live well with metastatic breast cancer. You may feel insurance barriers. • The “Genetic” and “Genomic” terms are very testing can be done on patients of all ages out to the manufacturer of the test to Metastatic breast cancer patients do you treat each year? like you should stay strong but it is also important for you to Gene Therapies: similar but actually refer to different types or who do not show any signs of illness. If a inquire about the availability of financial Triple Step Toward The Cure along with their caregivers face As a metastatic patient, you will likely Therapies that alter the genetic Men Against Breast Cancer find people who have experience in what you are facing, can • What has been your experience with the of information. gene mutation is positively identified, it does assistance to help cover the cost. www.triplesteptowardthecure.org complex medical situations with start to hear numerous new medical and structure of a tumor cell, making www.menagainstbreastcancer.org comfort you and are available to share their story. Trying to results of this treatment? not mean that the patient will definitely be accompanying financial challenges, technical clinical terms. To help make them more susceptible to either the Young Survival Coalition carry this burden alone while pretending everything is fine is sense of your situation, consider these tips How will my treatment affect my affected by the condition. Metastatic Breast intricate treatment decisions, long- • immune system or chemotherapy. www.youngsurvival.org not a good idea and can impact your overall health. when discussing your treatment: daily activities? Cancer Network term workplace and employment Under provisions Biomarker Testing may be completed concerns and many other unique Hormonal Therapy: www.mbcn.org Be honest with your treatment team about any emotional • Write down your questions before your visit. • How do you stay up to date on the latest of the Affordable Care Act, with genetic testing. Biomarkers refer to issues. While metastatic breast Treatment that adds, blocks, or strains and how you are feeling, as there may be support List the most important ones first to ensure treatment options and medical advances? new health plans are required the molecules found in all blood or tissues METAvivor cancer cannot be cured, it can be they are answered, and write down the removes hormones. To slow or services directly provided by your cancer treatment center • Do you enroll patients into clinical trials to pay for genetic counseling and that can be measured to indicate an www.metavivor.org treated and managed allowing the answers in case you forget. stop the growth of breast cancer, and available to help you and your family members. Another should I want to participate in one? and genetic testing for women abnormal condition or disease. Depending patient many quality years of life synthetic hormones or other drugs option is to take advantage of counseling benefits available • If you don’t understand what the healthcare on the specific biomarker, this genetic My BC Team ahead. This guide is designed to • Who do you recommend I see for a may be given to interfere with who have a demonstrated through your insurance plan, as this may be a way to express team is recommending, ask to speak with an testing can be used to identify risk of www.mbcnetwork.org provide practical advice to patients second opinion? the body’s ability to stimulate the high risk of having the yourself without feeling a burden of sharing with those oncology nurse to discuss your concerns. a disease, early detection through and their loved ones as they live with growth of breast cancer cells. BRCA gene. affected personally by your diagnosis. And lastly, there are • Would you consider having genomic testing screening or even help diagnosis a • Consider electronically recording the visit so many cancer organizations that offer emotional support, a metastatic breast cancer diagnosis. done on my tumor? specific cancer type. you or a family member can refer to it later. Human Epidermal Growth Factor including in-person support groups, one-on-one 24/7 phone

Receptor 2 (HER2): Genomic Testing is done on a cancer tumor support, connection to a mentor or fellow survivor, or online • Bring someone with you to your A protein that controls how cancer itself and looks for specific mutations that disease-specific forums to guide you through the process. appointment. They can ask questions you cells, grow, divide and repair may not think of and help you take notes. enetic Testing is performed on are present within the cancer cells. Results themselves. HER2 positive indicates blood or tissues of an individual to can provide valuable information on how that your cancer may respond to identify abnormalities or alterations your specific cancer cell is behaving, and targeted hormonal therapies. G in your genes that, if present, can identify this information can be used to match (Continued) (Continued) patientadvocate.org | (800) 532-5274 patientadvocate.org (800) 532-5274 Look inside for details on accessing alternative options Vocabulary to Know Options to Access Alternative and Emerging Treatment Options Helpful Resources and Federal Adjuvant Therapy: workplace Researchers today are discovering A clinical trial may require travel so it This option allows patients access to Advanced BC.org National Cancer Institute Treatment given after removing protections. new treatment options that target specific is important to consider transportation, effective investigational drugs that are in www.advancedbc.org www.cancer.gov the cancer with surgery. genetic changes in cancer cells. These lodging and food expenses. Some clinical Phase 3 or beyond of the clinical trial stage. www.cancer.gov/clinicaltrails BC Mets.org BRCA: new protocols can provide you and your trials will cover those expenses but only if Although these treatment options may not www.bcmets.org Breast Cancer susceptibility genes physician the ability to customize treatment requested by the patient. If you are working yet have been approved by the Food and National Underinsured make proteins that help control cell based on your unique tumor type and while accessing treatment via clinical Drug Administration, to access, there must Resource Directory Breast Cancer Trials growth. If you have a family history genetic mutations. This method has also trials, consider activating any workplace be reasonable evidence that the risk of www.patientadvocate.org/ Metastatic Breast www.breastcancertrials.org of breast or ovarian cancer genetic been found to reduce exposure to ineffective protections you may be eligible for, the drug is not greater than the risk from underinsured or less effective treatment protocols. including protected leave under the Family the disease and that the drug will prolong testing can identify your chances of BreastCancer.org Medical & Leave Act and applying for short- survival or improve your quality of life. Nueva Vida developing those cancers. www.breastcancer.org Cancer Guide Clinical Trials – Clinical trials offer the and long-term Disability benefits to protect www.nueva-vida.org ability to access an emerging treatment In this situation, your insurance may not Estrogen Receptor: your income during extended absences Cancer and Careers option otherwise unavailable outside of cover the cost of the treatment or drugs to Patient Resources, Inc. A protein found inside some from work. www.cancerandcareers.org www.patientresource.com/ cancer cells that is stimulated by the trial. Clinical trials are conducted in address any side effects. You may find it Metastatic_Breast.aspx the hormone estrogen and is a series of steps, called phases and many Accessing Investigational Drugs - If you helpful to discuss treatment options and Cancer Care dependent upon estrogen to times contain medication that has shown do not qualify for a clinical trial, you may financial obligations with your insurance www.cancercare.org Pink Link Breast Cancer grow. Also called ER. promising results in research. consider requesting treatment through an company or case manager if considering Social Network “Expanded Access” program (also known an Expanded Access program. Cancer Connect www.pink-link.org Expanded Access: as “compassionate use”). www.cancerconnect.org A program started by the FDA Caring for Your Emotional Side Breast cancer can happen to anyone, This guide delivers expert advice specifically for Metastatic Breast Cancer SHARE that allows certain promising Cancer Support Community regardless of whether they are old or www.sharecancersupport.org earning that you have metastatic breast cancer can patients to help avoid common insurance and care barriers. investigational therapies to be made www.cancersupportcommunity.org young, male or female, or whether be an overwhelming experience – one that leaves you available to people with serious or or not they have high or low risk Sharsheret feeling numb, frightened, vulnerable and alone even life-threatening illnesses without FORCE: Facing Our Risk of L factors. Breast cancer is considered Genetic and Genomic Testing www.sharsheret.org when you are surrounded by family and friends. other treatment options, before Cancer Empowered Metastatic, or Stage 4, when there is ncorporating knowledge specific your risk for developing a particular disease treatment found effective against reducing www.facingourrisk.org being formally approved for use. Sisters’ Network This is a time where you need to put yourself first. evidence cancer cells have spread to Engaging With Your Medical Team to the individual genetic makeup or type of cancer. This analysis of your or killing that cellular behavior. Many times www.sistersnetworkinc.org Metastatic breast cancer is treatable even if not curable. areas outside the breast or nearby Food and Drug in your body as well as your exact individual DNA can detect inheritable genes genomic testing also identifies ineffective Know Your Breast Cancer I Become informed about all of your treatment options, lymph nodes. Metastatic breast hen faced with a metastatic breast • Ask your provider to show you diagrams Administration (FDA): cancer as part of your treatment plan and chromosomes that have been found treatment options that can be avoided www.knowyourbreastcancer.com Susan G. Komen and have a clear head when you are making decisions cancer patients are likely to have cancer diagnosis or a recurrence or drawings that may help increase An agency in the federal can be highly beneficial and lend itself to be linked to a higher risk for hereditary by your doctor. Talk to your insurance ww5.komen.org regarding how you want to proceed. symptoms that affect other organs of breast cancer, there are many your understanding. government responsible for Lazarex Cancer Foundation W to more informed and targeted decisions disorders. For example, a defective BRCA company for coverage details about whether of the body, including the bones, aspects to consider during your wellness www.lazarex.org ensuring drugs, medical devices, on care. This concept, called “personalized (breast cancer) gene increases the odds that your plan will cover genomic testing related Triple Negative Breast Learn more about your treatment team by It’s important to know that feeling stressed and anxious is lungs, liver or brain, where the journey, such as available treatment options and equipment are safe for use in medicine” is a rapidly developing field of you will be susceptible to breast or ovarian to your breast cancer. If your insurance Cancer Foundation asking the following questions: Living Beyond Breast Cancer normal. Talking to someone may be the first step in helping cancer cells grow and multiply. and utilizing a proactive strategy to reduce the United States. treatment within the cancer community. cancer over the course of your life. Genetic company will not cover the testing, reach www.tnbcfoundation.org How many metastatic breast cancer patients www.lbbc.org you live well with metastatic breast cancer. You may feel insurance barriers. • The “Genetic” and “Genomic” terms are very testing can be done on patients of all ages out to the manufacturer of the test to Metastatic breast cancer patients do you treat each year? like you should stay strong but it is also important for you to Gene Therapies: similar but actually refer to different types or who do not show any signs of illness. If a inquire about the availability of financial Triple Step Toward The Cure along with their caregivers face As a metastatic patient, you will likely Therapies that alter the genetic Men Against Breast Cancer find people who have experience in what you are facing, can • What has been your experience with the of information. gene mutation is positively identified, it does assistance to help cover the cost. www.triplesteptowardthecure.org complex medical situations with start to hear numerous new medical and structure of a tumor cell, making www.menagainstbreastcancer.org comfort you and are available to share their story. Trying to results of this treatment? not mean that the patient will definitely be accompanying financial challenges, technical clinical terms. To help make them more susceptible to either the Young Survival Coalition carry this burden alone while pretending everything is fine is sense of your situation, consider these tips How will my treatment affect my affected by the condition. Metastatic Breast intricate treatment decisions, long- • immune system or chemotherapy. www.youngsurvival.org not a good idea and can impact your overall health. when discussing your treatment: daily activities? Cancer Network term workplace and employment Under provisions Biomarker Testing may be completed concerns and many other unique Hormonal Therapy: www.mbcn.org Be honest with your treatment team about any emotional • Write down your questions before your visit. • How do you stay up to date on the latest of the Affordable Care Act, with genetic testing. Biomarkers refer to issues. While metastatic breast Treatment that adds, blocks, or strains and how you are feeling, as there may be support List the most important ones first to ensure treatment options and medical advances? new health plans are required the molecules found in all blood or tissues METAvivor cancer cannot be cured, it can be they are answered, and write down the removes hormones. To slow or services directly provided by your cancer treatment center • Do you enroll patients into clinical trials to pay for genetic counseling and that can be measured to indicate an www.metavivor.org treated and managed allowing the answers in case you forget. stop the growth of breast cancer, and available to help you and your family members. Another should I want to participate in one? and genetic testing for women abnormal condition or disease. Depending patient many quality years of life synthetic hormones or other drugs option is to take advantage of counseling benefits available • If you don’t understand what the healthcare on the specific biomarker, this genetic My BC Team ahead. This guide is designed to • Who do you recommend I see for a may be given to interfere with who have a demonstrated through your insurance plan, as this may be a way to express team is recommending, ask to speak with an testing can be used to identify risk of www.mbcnetwork.org provide practical advice to patients second opinion? the body’s ability to stimulate the high risk of having the yourself without feeling a burden of sharing with those oncology nurse to discuss your concerns. a disease, early detection through and their loved ones as they live with growth of breast cancer cells. BRCA gene. affected personally by your diagnosis. And lastly, there are • Would you consider having genomic testing screening or even help diagnosis a • Consider electronically recording the visit so many cancer organizations that offer emotional support, a metastatic breast cancer diagnosis. done on my tumor? specific cancer type. you or a family member can refer to it later. Human Epidermal Growth Factor including in-person support groups, one-on-one 24/7 phone