MY LIFE Program

We know that you don’t want to have to learn about this, but the more educated you are about the topic, the more empowered you are to make decisions that are right for you.  Being diagnosed with metastatic breast cancer does not mean that there is no hope. Many women can live with metastatic breast cancer for years.  We want you to be equipped with as much knowledge as possible.

Understanding Metastatic Breast Cancer

Metastatic breast cancer is breast cancer that has spread beyond breast tissue and the surrounding lymph nodes to form tumors in other parts of the body such as bones, brain, liver, and lungs.

Metastatic breast cancer is also known as Stage IV or advanced breast cancer. Stage IV breast cancer is diagnosed in about 6-10% of newly diagnosed breast cancer patients.  Individuals with an initial diagnosis of Stage IV breast cancer have an average 5-year survival rate of 26%. That said, many people live for years or even decades with Stage IV breast cancer with a good quality of life; it is estimated that approximately 155,000 people in the United States are currently living with metastatic breast cancer.

While many young women can live a long time with the disease, it is important to note that no one knows how long an individual can live with metastatic breast cancer, so it is important to make treatment decisions that consider quality of life.  About 20 to 30% of all breast cancers that are originally localized within the breast become metastatic.

This Glossary of Terms will help you understand these important things about metastatic breast cancer in order to understand your diagnosis and make treatment decisions.

This program is brought to you through generous support from

Be Your Own Best Advocate

It is illegal for an employer to discriminate against an employee because of a serious illness, such as cancer.  If you feel that you have been discriminated against in the workplace because of your metastatic breast cancer, including being the target of inappropriate comments or jokes or being turned down for a promotion, you can take action.  Keep a record of the examples of the discrimination, and consider talking to your supervisor, company Human Resources department, and possibly a discrimination lawyer.

You may want to take a leave of absence from your job during part or all of your breast cancer treatment.  If you have worked full-time at a company that has 50 or more employees for at least one year, you are covered by the federal Family and Medical Leave Act (FMLA) for up to 12 weeks of unpaid medical leave, with no loss of job or benefits. Contact your employer’s Human Resources department to find out more about short-term (often 3-6 months) disability policies, which pay a percentage of your paycheck even if you are not able to work, such as during an illness.  Long-term disability (longer than 6 months) may be right for you if you want to take a long-term leave of absence from work and focus on your treatment and recovery, however, you may not receive your paycheck or benefits during this time.

If you have health insurance, your policy will probably cover many of the expenses associated with your tests, diagnosis, and treatment. Make sure that you know what policy you have and what is covered.  You can look this up on your company’s Human Resources website or call your health insurance company and ask them to send you a summary of your benefits.  It’s a good idea to keep insurance paperwork, receipts, copies of claims that you have submitted, bills, and other paperwork related to your healthcare costs in a 3-ring binder or folder.

Talk to your medical team if you’d like to keep working during your treatment.  It may be possible to schedule tests and treatments around your work schedule.  Start an electronic or paper calendar with work projects and deadlines and your treatment dates so that you have all of this information in one place.  It’s important to stay flexible—you may experience side effects and might need to work less hours than usual during treatment.  Having a backup plan, such as being able to work from home and/or delegate essential tasks to coworkers, is a good idea.
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Be Empowered

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Think about how you want to tell family members about your diagnosis.  Will you share the news in person, on the phone, via FaceTime or Skype?  Would you prefer to send a group text or a group email to all family members, and then follow up with individuals at a later time? You may also not be ready to share your diagnosis yet, and that is OK too. 

When people hear your news, they may ask you what they can do to help.  Make a list of tasks that your family members could do (meal preparation, household chores, transportation for you or other family members).  Perhaps a family member could coordinate a web page on a site such as CaringBridge.org to provide family and friends with updates; you may find it draining to continually provide updates to concerned family and friends.

Sometimes family members and friends may not understand a metastatic diagnosis no matter how many times you explain it, and this can be frustrating.  Visit online or in person support groups to get ideas on how to formulate responses or if you just need to vent.

Being single and dating can be challenging even without having breast cancer.  When you tell someone you’re dating that you have breast cancer or metastatic breast cancer is up to you.  In the end, honesty is often the best policy; consider sharing information about your diagnosis, treatment, and side effects with your partner once you’re ready to do so.

Something to keep in mind if you’re single is this – finding the right type of partner for yourself, if you so choose to do so, will play an important role in your emotional health. It is important to make sure your partner is someone who supports you, your choices and the realities of your diagnosis. Your new partner will become a member of your support group and care team, lifting you up, accompanying you on your journey and nurturing your emotional, mental and physical well-being. Remember that many have found love, and even marriage, after a stage IV diagnosis.

Learning that you have metastatic breast cancer can be overwhelming at first.  Eventually you will find “a new normal”.  Make the time to nurture your emotional, spiritual self.  Depending on your practices, connect or re-connect with a religious congregation. Try meditation or daily yoga.  Consider prayer.  Start a new hobby or take up an old favorite, like crocheting or knitting, reading, drawing or painting.  Join a support group or social network.  Take a class at your local community college. Make a vision board and map out your life – this is the time that you can purposefully design life – just as you want it to be.

Who are the people who lift you up when you are down?  Family members, friends, neighbors, classmates, coworkers and others can work together to support you.  Your support network can also include clergy, therapists, nurses, and other members of your medical team.  Let them know what you need.  Create a Google doc or set up daily, weekly or monthly outings, calls or in-home get togethers.  Make sure you let them know how you really feel – and let them know when you want heart to heart about the things that worry your mind or if you want to get out and have a good time.  You might just want to have someone sit with you and not talk. Whatever it is, make sure you have a core group that you can depend on. 

MY LIFE STORIES

Being diagnosed with metastatic breast cancer can be a daunting experience, but realize that you are not alone. Through MY LIFE Stories, we hope to inspire young women to see that as challenging as this experience might be, there are others like you, who are using their time in a powerful way. Read the MY LIFE Stories below.

MY LIFE PROGRAM

Want to be a part of our MY LIFE Twitter Chats? Send us topics you’d like us to address to mbc@tigerlilyfoundation.org. Add us on Twitter at @tigerlilycares and use the hashtag #MYLIFEChat to be apart of the conversation.

Twitter Chat Page

Join our Facebook page. We provide information on metastatic breast cancer throughout the year; and conduct social media campaigns to educate you more about the topic.

The MY LIFE Matters is partnership with Elephants and Tea.

Why Black Health Matters Fall 2020.

All archived MY LIFE Newsletters editions can be found here.

The MY LIFE Advisory Committee is comprised of a coalition of fearless and empowered young women, living with metastatic breast cancer, who provide leadership, insight and direction for Tigerlily Foundation’s MY LIFE Program.

Our MY LIFE Podcasts feature the perspectives of young women living with MBC, giving insight into their needs, challenges, and offering awareness and support to other Metsters. Monthly episodes will be released on the 1st of each month and posted on the My Life Blog and will also be available in the iTunes Store.

Approximately 150,000 people in the U.S. have Metastatic Breast Cancer (MBC), which annually claims more than 40,000 lives a year.  The African-American community is disproportionately impacted by MBC, yet have lower enrollment in clinical trials and often are under-represented in the conversation on the unique needs and priorities of young women of color living with stage 4 breast cancer.  Tigerlily Foundation’s MBC Disparities Outreach Program takes a three-pronged approach to culturally competent education and outreach:  listen, communicate and mobilize.

We held our first MBC Disparities Listening Summit in March 2019 – the first ever of its kind, where we had a powerful dialogue engaging the African-American community, centered on understanding the gaps, misperceptions and barriers to educate young women of color on metastatic breast cancer (MBC). We held this event in collaboration with young women, patients, caregivers, community leaders, creators, healthcare providers, advocates, researchers and policymakers.  At this Summit, we gathered insights, and will apply these recommendations to create culturally sensitive grassroots materials and mobilize ambassadors with tools to be their best advocates, better understand clinical trials, and to engage their communities, to lessen the gap, and lower African-American breast cancer mortality rates.

Over the next year, through this Disparities Outreach Program, we will share educational content, and will host regional MBC Disparities Listening Summits to learn about the unique perspectives, challenges and opportunities to better reach young women of color.

The #InclusionPledge:

WE PLEDGE TO ONLY PARTICIPATE IN ADVOCACY INITIATIVES – PANELS, ADVISORY BOARDS, PLANNING COMMITTEES, PROGRAMS, THAT INCLUDE THE EXPERIENCE OF AFRICAN AMERICAN WOMEN.

Overview:  We believe that literacy, financial barriers, access, social, systemic and hereditary backgrounds should not be determinants of life and health equity.

Mission: To advocate and activate the inclusion of women of color across initiatives impacting their breast and overall health.

Background:  At the 2019 San Antonio Breast Cancer Symposium, several advocates made an #inclusionpledge.  The inclusion pledge originated with Angela “Jersi” Baker, (an African metastatic breast cancer advocate and Founder of Angel in Disguise), Julia Maues and Christine Hodgdon.  Julia and Christine felt that as “white women living with metastatic breast cancer, [we] engage in advocacy to allow people with cancer to live longer and better lives. In this role, we get our voices heard by writing articles, speaking on panels, participating in advisory boards or reviewing grants. We have always seen ourselves as allies to people of color and thought it was unacceptable that certain population groups experience disparities in cancer outcomes. But we decided that “not being ok” with something this terrible wasn’t enough! We had to act.”  And, so began the #inclusionpledge.  At Tigerlily Foundation’s SABCS Fireside Chat, the #inclusionpledge was announced and everyone in the room was invited to commit to the pledge.  Maimah Karmo of Tigerlily Foundation, Jasmine Souers and Marissa Thomas from For the Breast of Us, joined Christine and Julia on a panel to make this pledge.  Maimah, Jasmine and Maurisa are all early stage breast cancer survivors who always include the metastatic experience as part of their education and advocacy work.  This pledge further empowers women of color, who often feel dismissed and not given a “seat at the table”.  Jersi continues to use her voice to make an impact. At Theresa’s Research Foundation conference, Jersi was sitting in an audience where women of color and inclusion was being discussed, yet there was not a woman of color was included as a patient advocate on the panel.  Christine and Julia agreed that it was unacceptable and asked her to join them on the stage.  This work, our collective voices, stance on disparities, diversity and inclusion is unwavering.  All stakeholders have to commit to change, to ensure women of color achieve health equity.  We have to collaborate to effect change.

Learn more how to get involved in our pledge here.

EXTERNAL RESOURCES

Wedding

Wish Upon a Wedding is a nonprofit organization granting weddings and vow renewals for couples facing serious illness or a life-altering circumstance.

PARTNERS

Learn more about our MY LIFE Partners

If you serve young women in the metastatic community and want to partner with us, please email mylife@tigerlilyfoundation.org.

The Tough Stuff

Because there is no cure for metastatic breast cancer, there will be a time when treatments are not successful or you decide to stop treatment because of severe side effects.  Think about what kind of medical care you want to have at the end of your life and who you would like to make decisions about your medical care if you are not able to.

A Living Will is a document that lists your choices for medical care such as if you want machines to keep your kidneys and lungs functioning, if you want cardiopulmonary resuscitation (CPR) if your heart stops beating, if you want to receive nourishment through a feeding tube if you aren’t able to swallow foods, and if you want to withhold food or fluids.

A Medical Power of Attorney is a document that lets you list whom you would like to make decisions about your medical care if you are not able to.  Once you have prepared and signed a Living Will and/or a Medical Power of Attorney, make copies and give them to your family members and your medical team.  Make a few extra copies for your medical records folder.

When or if you decide to stop treatment, you will still receive palliative care to help reduce your pain and maintain a good quality of life. Hospice care provides support to you and your family at the end of your life.  The goal of hospice is to make your quality of life the best it can be in the time that you have left.  Hospice care can be provided at your home, at a hospice facility, or in a hospital.  Clergy, counselors, home health aides, nurses, and social workers often work together to provide hospice care.

You may decide to preplan or even prepay your funeral or memorial service. Some details to consider are what kind of service, any particular music or hymns, and your preferences in terms of your physical remains (cremation, burial location, donating your body to the medical community).  Write your wishes down and save them either on paper or electronically for your loved ones. 

Saying “See you later” to Friends and Family

So, this is the part that no one likes to talk about.

Life is a wonderful blessing, and at Tigerlily Foundation, we like to believe that it never ends. We believe that we transition from a physical to a spiritual form and that we can be with our loved ones in a different way. So, transitioning can be looked at as a “see you later” and a new beginning.  There are a lot of unknowns, and it isn’t easy to say goodbye for you or your loved ones.  So, here is an approach: 1) Live your life now like you never have before – be open, vulnerable, live out loud, love as wide as you can; 2) Make a bucket list and DO IT; 3) Make a list of your favorite memories with your parents, siblings, children, grandchildren and special friends and share your thoughts with them either in writing or by recording video messages to them.  4) If you have children, consider recording advice for them for the future. Tell them how much you love them.  5) If you enjoy scrapbooking, put together a photo book for loved ones of your favorite holidays, travels, or other good times together.

Also, before the time comes, begin a dialogue with your family, including your children about what they are thinking and feeling.  Explore the option of adopting a pet or planting a tree together, so they can nurture it and watch it grow. Leaving your family with happy, living reminders is a great way they can feel close to you, or to help them soften the fear of you “leaving them”.

Celebrating Life

It is challenging not to brood about the past or worry about the future, but as much as possible, try to be present and live in the moment.  Consider keeping a gratitude journal and taking time to savor the “little” things in life, like a beautiful sunrise, the ritual of brewing tea, and the changing colors of the seasons. Make time for favorite hobbies and visits with cherished family and friends.   Enjoy every breath. Put your hand on your heart – hold it there and “feel” your heart beat.  Take in every sight and sound.  Enjoy the touch – of heat and cold, hugs, kisses, textures – take it all in. Above all, say all that needs to be said.  Laugh. Do it all. Live.

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