The Black TNBC Sanctuary’s sole purpose is to provide you with all of the trusted resources, accurate medical information, and community love that will help you face the challenges of this disease no matter where you are in your TNBC experience. We have personally vetted every resource and word included here for accuracy and quality.
But this is an ever-changing place, where we are constantly working to bring you the newest and most up-to-date information. If you know of any resources that should be included here or if you think we are missing a topic, please reach out to us at [email protected]. We’re all in this together.
We believe that having support from our like-minded community is critical to our coping and healing. We all have family and friends who love and support us, but nothing is like the unconditional love from others that share this TNBC experience.
Many of us have had the experience of going into a breast cancer support group where no one looks like us—the women are usually white, older, and all they talk about is tamoxifen and its side effects.
The following support groups and community support resources were chosen because they speak to some piece of the Black TNBC experience. Read the descriptions to learn more about each of them and pick one (or a couple!) that feels like the best fit for you.
TNBC Talk was created specifically for Black individuals diagnosed with TNBC. Join us on Zoom on the first Tuesday of every month at 8pm ET where we gather to share our Black TNBC experiences and encourage each other with genuine Blesstie love and support.
TOUCH Talk is open to all Black individuals diagnosed with breast cancer. While all participants are Black, not all participants will have had a TNBC diagnosis. We meet the first Saturday of each month at 11am on Zoom.
Join our monthly, virtual meet-up for those diagnosed with metastatic, triple negative breast cancer. Share information, treatment experiences, tips and support. This support group is open to all races and ethnicities.
Join TNBC Foundation and fellow triple negative breast cancer thrivers on the first Tuesday of every month for a virtual meet and greet. This support group is open to all races and ethnicities.
Join TNBC Foundation and fellow triple negative breast cancer thrivers on the last Thursday of every month at 7pm ET for a virtual meet and greet. This support group is open to all races and ethnicities.
The Young Survival Coalition has virtual hangouts specifically for African American and Black Young adults affected by breast cancer.
The Breasties host virtual meet-ups specifically for BIPOC, LGBTQ+, and Thriver/Stage 4 Breasties.
Facing Our Risk of Cancer Empowered (FORCE) holds support groups that address unique needs and concerns regarding hereditary cancer for people of color, men, LGBTQAI+ individuals, caregivers, and Spanish speaking community members.
The Bright Spot Network holds bi-monthly support groups for parents of color who are cancer survivors.
TNBC is typically diagnosed in a two-stage process. If you have a lump in your breast or another breast cancer symptom, your doctor will start with imaging. If your doctor sees anything unusual during imaging, they may recommend a follow-up biopsy to determine if what they see is breast cancer or something else (like a cyst or benign tumor).
Click here to learn more about screening, diagnostic, and testing options.
Surgery removes the area of the breast with cancer and potentially lymph nodes and/or some healthy surrounding tissue. How much of the breast is removed depends on the size and location of the tumor.
Click here to learn more about your surgery options, including breast reconstruction, and what to expect.
Chemotherapy—chemo for short—is often the main whole-body treatment for TNBC. Instead of targeting just one area of the body, chemotherapy aims to kill cancer cells throughout your entire body. Chemotherapy is very good at killing rapidly dividing cancer cells, which are common in TNBC.
Click here to learn more about chemotherapy options and what to expect.
Radiation therapy, or radiotherapy, uses high-energy rays to kill cancer cells.
Click here to learn more about radiation therapy options and what to expect.
Immunotherapies help to boost your immune system so that it can do a better job of recognizing and fighting cancer cells.
Click here to learn more about immunotherapy options and what to expect.
Targeted therapies use medicines to identify and attack specific targets on cancer cells. The goal of targeted therapies is to slow down and/or kill cancer cells.
Click here to learn more about targeted therapy options and what to expect.
TNBC patients can also participate in clinical trials for treatments still seeking FDA approval. This can be especially important for Black individuals, since the majority of breast cancer clinical trial participants are white. Individuals interested in joining a clinical trial can use resources such as When We Tri(al) or by asking their oncologist.
Learn more about Black women and clinical trials under the clinical trial tab.
Too often, Black women are dismissed by doctors. You deserve to be heard and seen by your care team. Demand a high quality of care. Demand the time and space you need to make informed treatment decisions that are right for you.
A medical team for someone diagnosed with triple negative breast cancer typically consists of multiple healthcare professionals specializing in different aspects of treatment and care. Click here to learn more about the key members of your medical team.
Newly diagnosed patients can learn more here about what to know before your first few appointments.
Not sure about your doctor or want to feel more confident in your treatment plan? Did you know that you can get a second opinion after being diagnosed with breast cancer? Here’s everything you need to know about getting a second opinion.
Our concerns, our questions, our side effects, and our pain are valid—we deserve to be active decision makers in our breast cancer treatment and care plans. Learn more about being the CEO of your own health.
Too often, Black women are dismissed by doctors. You deserve to be heard and seen by your care team. Demand a high quality of care. Demand the time and space you need to make informed treatment decisions that are right for you.
All of the following funds and grants require some proof of diagnosis, whether that be a signed letter from your doctor or a specific form to fill out.
Offers up to $3,000 to eligible breast cancer patients in active treatment over the course of three months in the form of direct bill pay (ex. utility bills, mortgage or rent, car or car insurance payment, health insurance premiums). Check your eligibility.
PAF has a Co-Pay Relief Program as well as Financial Aid Funds. They also have a National Financial Resource Directory.
Offers grants ranging from $500 - $1,250 to eligible breast cancer patients in active treatment. Applications are accepted every other month on the third Wednesday (January, March, May, July, September, and November). Funds can only be used for living expenses, not towards medical costs. Funds are dispersed as direct bill pays and can take 6-8 weeks from the time of application. Check your eligibility.
Offers $400 grants to eligible breast cancer patients to be used on any medical or daily-living costs. Accepts applications on a rolling basis. Can take up to 8 weeks from time of application to receipt of funds. Check your eligibility.
Offers $300 grants to eligible TNBC patients to assist with treatment-related costs including transportation and childcare. Check your eligibility by calling the TNBC Helpline at 877-880-TNBC (8622).
The Patient Advocate Foundation (PAF) has a PAF Case Management program that offers free, one-on-one support to patients and families to help support them with access to care, paying for treatment, paying for living expenses, employment, and more.
BreastCancer.org has an extensive list of Charitable Resources for People Diagnosed with Breast Cancer, including support for legal, prescription medications, transportation to and accommodation for treatment, fertility preservation, hair loss, nipple tattooing, mental health support and more.
Family Reach is a nonprofit that works to remove the financial barriers standing between cancer patients and their treatment. They have created the following downloadable guides to support patients through the finances of a cancer diagnosis:
1) Finance Checklist for Cancer Patients and Caregivers
2) Your Financial Guidebook for Adult Cancer
Despite the severity of TNBC, only a handful of drugs outside of chemotherapy and radiation therapy have been approved by the FDA to treat it—this is because most of the targeted therapies used to treat other breast cancer subtypes (drugs like tamoxifen, for example) don’t work for TNBC.
And since most clinical trial participants are white, we don’t know how effective the drugs that are approved for TNBC are for Black patients. A treatment that works for an older, earlier stage white patient may not work the same for our bodies. The truth is, we can’t know without more research and data. In order to test how drugs work on Black bodies and keep Black Blessties from dying at higher rates, we need more Black women in clinical trials, especially TNBC clinical trials.
When you consider enrolling in a clinical trial, you’re not only investing in the most cutting-edge treatments for yourself, but you also take the first step towards helping to develop better TNBC treatments for all Black women.
Visit When We Tri(al) to learn more about why clinical trials are important for Black individuals diagnosed with triple negative breast cancer.
Did you know that you can participate in research from your own living room? Even online surveys gather important data about the experiences of Black breast cancer patients and survivors/thrivers. Here are a few research studies that want your input:
It can be hard to prioritize exercise and movement when battling cancer and even after. But studies show that regular exercise can actually lead to less fatigue, better bone health, lessened anxiety and depression, and a better quality of life for breast cancer patients. And studies have shown that regular exercise can also decrease risk of recurrence.
Guidelines suggest moderate intensity aerobic exercise (walking, dancing, jogging, swimming, playing tennis, cycling, etc.) at least three times a week for at least 30 minutes and, in addition, resistance exercise (lifting weights or using weight machines at the gym, running stairs, using resistance bands, high-intensity resistance training, pilates, etc.) at least two times a week. But the most important thing is to find a type of exercise that you can commit to doing regularly—whether it’s walking, running, swimming, dancing, cycling, strength training, yoga, pilates, paddle boarding, or something else. Picking a form of movement that you can and will do every week makes a big difference. Start slow and work up to these recommendations.
If you are currently in treatment, planning to undergo surgery, have bone metastases, have peripheral neuropathy, or have other conditions or diagnoses, ask your doctor about your specific movement limitations or exercise considerations.
Exercise is Medicine’s Moving Through Cancer program can help you to find exercise professionals and resources in your community.
The Cancer Exercise App, built with cancer patients and survivors in mind, can help you to develop a personalized exercise program on your smartphone and track your progress towards your exercise goals.
In person programs:
Livestrong at the YMCA
Understanding your rights can equip you to advocate for yourself and ensure you receive the accommodations and support necessary to maintain your quality of life during and after treatment. Talk to your oncology social worker or patient/nurse navigator to help you better understand what benefits are available to you based on your specific diagnosis and treatment plan. Learn more about your disability rights here.
The National Breast Cancer Foundation breaks down disability rights for breast cancer patients.
The US Equal Employment Opportunity Commission and the US Department of Labor both offer resources around understanding and navigating disability rights in relationship to cancer.
The American Bar Association lists Pro Bono Legal Referral Services for cancer patients by state.
LegalHealth’s National Cancer Legal Services Network offers free legal services nationwide to people affected by cancer.
Triage Cancer’s Legal & Financial Navigation Program provides individuals diagnosed with cancer and caregivers with free one-on-one help.
The Patient Bill of Rights and HIPPA protect your right to safe care without discrimination, to keep your medical information private, and to guarantee access to your own medical records.
The American Cancer Association gives an overview of the Patient Bill of Rights, as well as resources for more information.
Cancer Care created a fact sheet on the Patient Bill of Rights and HIPPA (Health Insurance Portability and Accountability Act), which protects your medical information.
The Women’s Health and Cancer Rights Act (WHCRA) protects women who choose to have breast reconstruction after a mastectomy.
The US Department of Labor’s Your Rights After a Mastectomy resource helps to explain the WHCRA for breast cancer patients.
There are two types of genetic and genomic tests recommended for patients with TNBC.
Germline testing looks at a patient’s DNA to determine if cancer may be driven by genetic mutations that the patient was born with.
Biomarker testing looks for mutations in the cancer itself.
You can learn more about genetic testing here.
Anyone who is considering genetic testing should meet with a genetic counselor. Genetic counselors will help explain the entire process and also help you to understand what the results mean.
Facing Hereditary Cancer Empowered (FORCE) has extensive resources about genetic testing, paying for testing, and more. FORCE also has a helpline you can call and ask questions or talk to someone.
TOUCH 4 Life’s Black Genes Matter campaign houses information about biomarkers, genetic testing and counseling, family health history, inherited risk, and questions to ask your doctor about genetic testing.
The No One Missed campaign discusses and explains biomarker testing specifically for individuals diagnosed with metastatic breast cancer.
Integrative care combines conventional clinical treatment with complementary care. It’s a big umbrella term for all of the therapies and approaches that exist outside of conventional medicine. Integrative care looks at the whole person and, in doing so, personalizes tools to each specific patient.
Integrative care may include acupuncture, massage, meditation, nutrition, supplements, and/or healthy lifestyle choices.
Integrative care can be added to your treatment plan to help reduce stress, manage side effects, make it easier to stay on your treatments, help you sleep, and overall improve your quality of life.
For example, one study found that a compound in green tea (called EGCG) can help with some side effects of radiation for breast cancer patients.
Research also shows that acupuncture (a procedure that applies needles or pressure to certain parts of the body) can be effective in treating side effects of cancer treatment.
Unite for HER’s Wellness Programs offer those who qualify (within 18 months of diagnosis OR living with metastatic breast cancer) a care box filled with educational resources, safe home and beauty products, and access to live and recorded digital resources–at no personal cost. Services include acupuncture, exercise, reiki, meditation, nutrition, massage therapy, counseling, sexual health counseling, and yoga. The Unite for HER library also houses free nutrition videos and cooking classes, guided meditations, and fitness and yoga videos.
The National Center for Complementary and Integrative Health has a comprehensive A-Z list of all things integrative health. For every supplement and approach, you can find reliable and trustworthy data about if and how it works.
Palliative care simply means care that directly addresses the symptoms of breast cancer and side effects of treatment, such as pain or discomfort, nausea, insomnia, constipation, and more. Palliative care is added onto your medical treatment plan with the goal of improving your quality of life during breast cancer treatment, no matter your stage or how recently you were diagnosed.
Palliative care can make living with a serious illness easier. Think of it as extra support for you and for your caregiver. Ask your social worker, patient navigator, or your doctor’s office if your insurance covers palliative care and if palliative care might be a good addition to your treatment plan.
The National Cancer Institute and CaringInfo both have resources that describe and explain the details of palliative care.
Get Palliative Care is an online resource that specializes in all things palliative care. On the website, you can find information specifically for breast cancer palliative care, answers to frequently asked questions about palliative care, or search in the national palliative care doctor directory.
The National Alliance for Care at Home also offers a provider directory that allows you to search for a palliative care doctor by state or zip code.
TNBC takes a toll on every part of our bodies. We want you to have the information that you need to look and feel beautiful, even in the face of cancer. We’re here for your questions—whether they’re about preparing for treatment, what to expect afterwards, or which products are safe for us.
Breast Cancer Prevention Partners’ Black Beauty Project offers a database of non-toxic Black-owned beauty products and brands that Black women can trust.
Bench 2 Community has resources that help reduce exposure to harmful chemicals in personal care products. Their work focuses on breast cancer risk for Black people.
Cancer Fashionista’s Dear Cancer, I’m Beautiful podcast can be found online or in the podcast app on your smartphone. Taking Beautiful Risks with Patricia Fox (season 1, episode 10) features Patricia, a Black woman who discovered her breast cancer at 26. The episode includes how she became a Sephora ambassador and her favorite beauty tips for Black women.
Hair loss is a common side effect of many chemotherapies (although not all). Ask your doctor if hair loss is a side effect of the specific chemotherapy you’re on. While we focus on the hair on your head here, you should know that you may also lose eyebrow hair, eyelashes, and pubic hair during chemo.
Some women choose to cut their hair or even shave their head before chemo so that they have control over how and when they lose their hair. This decision is personal and entirely up to you—there’s no right or wrong choice. Your scalp may feel more sensitive and irritated than usual right after your first chemo treatment. Braids, twists, locs, and knots can pull your scalp and make that soreness worse. After you start chemotherapy, it can also hurt to have these styles or any weaves taken out. Consider taking out protective styles or weaves before your start chemo to avoid any additional stress or tension on your scalp.
You may start to lose some or all of your hair anywhere from one to three weeks after your first chemo treatment. Cold capping (see below) is an option that may help lessen hair loss during chemo.
As your hair begins to grow back after chemo, it will be very sensitive and vulnerable. Stay away from any chemical or dye hair treatments, pulling the hair tight (like in braids), or adding in extensions until your hair is at least 3” long.
There are wig companies that specialize in Black wigs, such as Coils to Locs, Shades of Melanin, Be Natural Girl, To All My Black Girls, and Knappy Hair. Wearing a wig won’t slow or stop your hair growth.
Check with your insurance to see how much they will cover for a wig and what proof of purchase you will need to submit to them.
Cold capping—also called scalp cooling—is a newer option for people undergoing chemo who want to try to lessen any hair loss during chemo treatment. The research is mixed on how effective cold capping is for Black women and how much hair it might save.
You can learn more about cold capping and how it works here.
BreastCancer.org hosts a community forum board specifically for Cold Caps and African-American Hair where you can hear directly from Black women who have undergone or are considering cold capping.
Ask your doctor about whether cold capping might be a good fit for you and check with your insurance to see if they cover cold capping. HairToStay and the Fleener Family Foundation offer need-based support to offset the expense of scalp cooling systems for chemotherapy patients. The Rapunzel Project also lists financial support resources by state, as well as a directory of cancer centers that have cold capping abilities.
You can read about two Black women’s experience with cold capping in How Cold Caps Are Restoring Autonomy for Chemo Patients published in Essence.
If you’re considering having children (or more children!) in the future or even if you’re undecided about having kids someday, it’s important that you talk with your doctor about fertility and your fertility preservation options as soon as possible, preferably before your treatment starts. Start by telling your doctor that you want the option to have children. From there, your doctor should refer you to a reproductive specialist. If not, ask for one.
But even without fertility preservation, you could still get pregnant after breast cancer treatment. Your fertility will depend on how old you are and what type of chemo you received.
Women have two options for cryopreservation: embryo cryopreservation and unfertilized oocyte preservation. Cryopreservation sounds more complicated than it is—most people refer to it as freezing your eggs. Embryo cryopreservation means freezing fertilized eggs. Your partner’s sperm or a donor’s sperm is combined with mature eggs from your ovaries via IVF (in vitro fertilization). Unfertilized oocyte preservation means freezing mature eggs from your ovaries without any sperm.
Women may also consider ovarian suppression in addition to cryopreservation to protect the ovaries from the toxic impacts of chemotherapy. Ovarian suppression involves adding a injectable medicine (like goserelin (Zoladex), leuprolide (Lupron), or triptorelin (Trelstar)) during your chemotherapy that keeps you from ovulating and causes your ovaries to stop producing estrogen and progesterone (key sex hormones) in order to preserve ovarian function and fertility. Ovarian suppression is reversible, which means that your ovaries will go back to ovulating and releasing the right hormones when you stop the medication.
Livestrong’s Fertility & Cancer FAQ for Women covers common questions.
The most common fertility preservation method for men is sperm cryopreservation. Sperm cryopreservation simply involves collecting a sperm sample and then freezing it. If you are considering sperm cryopreservation, it’s strongly recommended that sperm be collected before the start of cancer treatment. Sperm collected after the start of treatment has a higher risk of genetic damage and being lower quality.
Young Survival Coalition and The Oncofertility Consortium are both comprehensive and trusted resources for information about fertility and breast cancer.
Living Beyond Breast Cancer created a helpful Fertility & Metastatic Breast Cancer resource for young women diagnosed with metastatic breast cancer.
Insurance companies don’t always cover fertility preservation, so ask your insurance company what they cover and ask your nurse navigator or social worker if they have any resources. FORCE and BreastCancer.org have compiled lists of fertility preservation financial assistance opportunities. You can also apply to Livestrong Fertility, which supports people diagnosed with cancer in their fertility preservation through cost-reduced partner clinics.
Ask your doctor how long you will need to wait before trying to get pregnant after treatment.
If you’re struggling with infertility after breast cancer treatment, know that there are options. The Broken Brown Egg has a collection of resources on Black infertility and family building options. Fertility Within Reach compiled a list of financial support available for infertility treatment grants, adoption grants, and more.
From surgery scars to how you see yourself, breast cancer changes your relationship with your body. It can change how you feel about sex, how you relate to your partner, and it can change your preferences—where you like to be touched, how you like to be touched, what types of intimacy turn you on.
You’re not alone. All of us have faced difficulties with sex at some point during and after breast cancer treatment.
Change is hard and it may take some time, but you will figure out how sex and intimacy feels good to you now. And we can help. Remember that sexual wellness isn’t just about the physical stuff, it’s also about your mental health, nutrition, rest, and so much more. It’s best to start by identifying the issues you’re having so that you can create a plan to address them.
Talk with your doctor, social worker, or nurse navigator about your sexual health and any sex concerns. It can feel awkward, but they can help you. Ahead of treatment, you can ask if anything in your treatment plan may impact sex for you. After treatment, try to be specific about any symptoms or concerns you have, like pain during sex or low sex drive. There are many specialists that focus on helping people have better sex after cancer, like sex therapists, pelvic floor physical therapists, and couples counselors.
The American Cancer Society has an in-depth overview of Sex & Cancer that covers common problems that people face.
Your treatment plan addresses breast cancer, but you need a plan to address the emotional and mental toll of a TNBC diagnosis too. Whether you’re newly diagnosed, in survivorship, or are living with TNBC, mental health resources can help you to care for yourself.
Dr. Joy Harden Bradford is a licensed psychologist and the host of the popular mental health podcast, Therapy for Black Girls. Check out Session 327: Navigating a Breast Cancer Diagnosis.
The Therapy for Black Girls website can help you to find a therapist within their database. Black Emotional and Mental Health Collective has extensive wellness tools and a searchable directory of Black therapists.
Some organizations offer free therapy sessions to Black women who apply. The Boris Lawrence Henson Foundation offers five free therapy sessions and The Loveland Foundation Therapy Fund offers 4-12 free sessions. Center for Black Women’s Wellness provides care—including mental health care— to Black women without health insurance on a sliding fee scale.
The Women’s Center, Black Mental Wellness, and Melanin & Mental Health house lists of Black mental health resources, including podcasts, articles, and social media accounts.
Pregnancy is one of the biggest times of change in your life. And a TNBC diagnosis—whether before, during, or after pregnancy—can feel overwhelming and terrifying. We are here to hold you in this time, to celebrate life, and to give you love and support. Your best resource is your care team, who will lay out all of your options and walk you through the specifics of your diagnosis.
Having breast cancer doesn’t hurt your baby—breast cancer cells don’t pass from a mother to her child in the womb.
Treatment options for pregnant women depend on the stage of the disease and the trimester of the pregnancy. The American Cancer Society breaks down the details of treating breast cancer during pregnancy.
If you are diagnosed with TNBC while pregnant, your care team will grow to include specialists that focus on pregnant women and fetal health.
Depending on where you are in your pregnancy and the details of your diagnosis, there is a chance that your doctor may recommend induction and early delivery of your baby so that you can start breast cancer treatments sooner. Talk to your doctor about your options, what they recommend, and why. It’s important that you and your doctor make the right choices for you and that you feel supported in those choices.
If you are undergoing treatment after the birth of your child, it’s recommended that you stop breastfeeding around surgery, targeted therapy, and/or chemotherapy. Bobbie—an organic infant formula company that was founded by moms—supports moms impacted by breast cancer by offering a full year of Bobbie formula.
Experiencing breast cancer during pregnancy can trigger feelings of anxiety and depression. Postpartum Support International has a HelpLine for postpartum mothers.
Read Tamara’s story of being diagnosed with TNBC while pregnant from the National Breast Cancer Foundation.
Congratulations! We are so happy for you and for your growing family! The American Cancer Society breaks down common questions and concerns about pregnancy after breast cancer treatment.
Young Survival Coalition has a blog post about new, hopeful research on pregnancy after breast cancer.
Currently, there are no widely agreed on guidelines for people diagnosed with metastatic TNBC who want to get pregnant. Talk to your doctor about your fertility and pregnancy options.
There’s so much to consider and process after a TNBC diagnosis that it can be hard to know where to start. While the logistics of health insurance are probably not at the top of your list, there are two things you should prioritize after you are diagnosed.
These two steps will help you to better understand the insurance options available to you.
If you are uninsured or underinsured, you still have options and opportunities. You can learn more about getting insurance after a breast cancer diagnosis here.
See our Financial Resource and our Patient Rights Resource sections for financial, legal, and navigation support.
Some pharmaceutical companies offer patient assistance programs to help patients afford their medications. Depending on which medications are in your treatment plan, you can reach out to these assistance programs directly. Learn more here.
For more information about workplace rights, disability rights, and patient rights, see our Patient Rights resource section.
The Cancer Legal Resource Center has a comprehensive Patient Legal Handbook that gives information about cancer-related legal issues from diagnosis through survivorship.
You’ve rung the bell. Your scans are clear. Your doctor says that you have no evidence of disease. Whether you’re five days out, five weeks out, or five years out, we've been there.
Entering survivorship can feel strange. You’ve beat cancer, but also worry that it could come back. There is so much to be grateful for and also it isn’t that simple. Survivorship can elicit a mixture of strong feelings—happiness, worry, relief, loneliness, guilt, and fear.
Whether you’ve found a new purpose as a survivor or you wish that you could go back to how things were before your diagnosis, here are some resources and information for tackling survivorship:
After you finish treatment, your doctor should talk to you about a survivorship care plan. This plan should be specific to you and your previous diagnosis and treatment. If they don’t bring it up or if they give you a generic plan, tell your doctor that you would like a personalized survivorship care plan at your next appointment. The National Coalition for Cancer Survivorship has developed a Cancer Survivorship Checklist that can guide you through creating a survivorship care plan with your doctor.
In this conversation, ask your doctor about any long term side effects from your specific treatment. Try asking:
In general, you should be aware of the following potential side effects of TNBC and/or its treatment:
If you start to experience any of these side effects, tell your doctor right away.
There are a number of different guidelines for how often TNBC survivors should have follow-up appointments. Some say every three to six months for the first three years after treatment, others say every three to twelve months. Some recommend that your follow-up schedule should depend on the stage of TNBC you had, with stage 1 and 2 needing follow-ups every six months and stage 3 needing follow up every three months for the first few years.
The point here is that there are no clear-cut rules about how often you should follow-up with your doctor. You and your doctor should decide together how often you want or need to have appointments. If your doctor suggests once a year and that makes you uncomfortable, speak up and ask to follow-up sooner.
TNBC has a higher rate of recurrence than other breast cancer subtypes. According to research, 34% of people diagnosed with TNBC will experience a recurrence. The risk for recurrence is highest in the first five years after diagnosis. After five years, TNBC recurrence rates drop significantly.
As a result, a lot of us hold fear and anxiety around recurrence. It intensifies around scans, in what most of us call scan-xiety. But it’s there in the quiet moments too, when you get out of the shower and see your scars in the mirror. When you wonder if you did the right things the first time around to keep the cancer from coming back. The fear is just there.
The truth is, you can’t control whether or not a recurrence happens. And it’s not your fault if it does. You can let the worry take up space and energy, or you can choose to recognize the fear, but not let it take anything from you. Cancer has already taken enough.
Lean on your faith, on your loved ones, and on us—this community is here to help each other. Trust that you will be okay, no matter what comes next.
The most important thing is to talk to your doctor about your side effects—when they started and if they’ve changed at all. The sooner you let your doctor know, the more options you’ll have. Your doctor can then determine if you need medicine or another specialist to support you.
There are some things that survivors can do to lower the risk of recurrence and/or address treatment side effects:
Additional integrative therapies like acupuncture, therapy, and massage can help with many side effects. See the Integrative Care section of our resources to learn more.
You can read first-hand accounts of breast cancer survivorship in Essence’s Sisters In Survivorship: Black Women On Life After Breast Cancer.
Many of our breast cancer experiences took us on spiritual journeys. Yours may too. It’s a tough time—our own prayers and the prayers of our families and friends got us through. The prayers are still, years later, supporting us in all we do.
Put your faith to work. Know that faith with out works is dead (James 2:17) so use all of the tools that God gives you to get the care you deserve.
Know that YOU can do all things through Christ which strengthens YOU. Know that YOU can do hard things through Christ which strengthens YOU. (Philippians 4:13).
And Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take. (Proverbs 3: 5-6). And most importantly, don’t be impressed with your own wisdom (Proverbs 3:7).
God will lead you. God will guide you. God will heal you. Trust in that.
One of our favorite prayers was written by Teresa Kay Kennedy: Seek order, simplicity and peace, creating space for your blessings to increase. Be Blessed!
The Tigerlily Foundation has an entire page of their site dedicated to spirituality.
Caregivers are the unsung heroes of TNBC. You keep track of medications and appointments. You cook meals and clean the house and distract the kids. You take on an incredible amount of physical, domestic, emotional, and mental labor in order to support your loved one’s treatment and recovery.
But taking care of yourself isn’t optional or an afterthought, it’s critical in order for you to be your best self for your loved one. It’s like they say on airplanes—you have to put your oxygen mask on first before you can help others.
In addition to taking care of yourself, the second most important thing you can do is to understand the different challenges that come with this disease. Alongside your loved one, you need to demand the best care from doctors that acknowledges the latest data and clinical trial options for TNBC. Don’t accept the status quo.
Our site will keep you up-to-date on what’s available to help Black TNBC patients—check our Research Updates page for news about the latest options.
The organizations listed below offer incredible information, support, and resources for caregivers. Many of them have Black members and Black resources, but they are not comprehensively specific to Black individuals.
The Caregiver Action Network supports caregivers with a resource toolbox and a caregiver help desk.
CancerCare has a resource specifically for Caregiving for your Loved One with TNBC.
The American Association for Cancer Research’s Cancer Today magazine offers caregiver specific blog posts.
As always, if you know of a great resource that serves our community, please send it to [email protected]. We are constantly working to find the best possible resources for you.
You can read about one husband’s TNBC caregiving story at The National Breast Cancer Foundation, Inc.
When you imagine telling your family about your TNBC diagnosis, it’s easy to feel like you’re burdening others or that you don’t want people to worry about you. But you can’t face this disease alone. You need a village around you.
Whether you were diagnosed yesterday or are in survivorship, you owe it to your family to tell them and let them make decisions about how they can show up for you and about what your TNBC diagnosis means for their own health. Similar to the feelings that you had at your diagnosis, you can expect that people may feel a range of emotions: fear, sadness, anger, uncertainty, anxiety, etc. It’s a scary time for everybody, but the only way to process these feelings is to work through them. Remember, these people love you more than anything.
We can help you figure out how to talk to your family— whether it’s your partner, your parents, or your children.
The challenges of metastatic TNBC deserve specific time and attention. The organizations listed below offer incredible information, support, and resources for metastatic breast cancer. Many of them have Black members and Black resources, but they are not comprehensively specific to Black individuals.
As always, if you know of a great resource that serves our community, please send it to [email protected]. We are constantly working to find the best possible resources for you.
What legacy do you want to leave? What story do you want told about you for years to come?
Sometimes, thinking about death can make us worry that we’re jinxing it. That if we avoid these conversations and planning, maybe it won’t happen to us.
Cancer takes away a lot of our control. But when it comes to your legacy and your death, you have the opportunity to say “this is what I want,” from the music choices to who is speaking to what’s written in your obituary. And on top of that, communicating your wishes and preparing your family early can make the process easier on them.
End of life planning is for everyone, regardless of diagnosis or stage.
Inheritance of Hope offers a free legacy video program for metastatic cancer patients. Through this program, a coach helps you to create videos about your life that you can pass on to your children and loved ones.
Inheritance of Hope also offers free Legacy Retreats for metastatic cancer patients. The retreats aim to inspire hope in young families—with children 18 or under—facing the loss of a parent to a life-threatening illness.
Hospice is a specific type of medical care available to patients as they near the final stages of their life. Hospice focuses on your quality of life and needs as you near the end of your life. While this can sound scary, hospice doctors and nurses are trained in maximizing your comfort and addressing any concerns or symptoms you have, such as pain. Hospice professionals also work to support caregivers and loved ones during this time. You should know that hospice also includes emotional and spiritual care. While there are hospice facilities for patients who require more intense medical care, hospice can also be offered to you in your own home.
It’s hard to know when you are ready for hospice. After fighting and surviving for so long, some people feel like hospice is the same as giving up. But there is peace and beauty in shifting in the kind of care you choose to receive—hospice can be enveloping and even freeing for patients and families.
CaringInfo has resources that describe and explain the details of hospice care.
Beginning as a member of the For the Breast of Us inaugural class of Baddie Ambassadors, she found her footing in the advocacy and cancer communities. Since then, she has joined forces with organizations—such as TOUCH, The Black Breast Cancer Alliance (TOUCHBBCA); Project Life; Bright Spot Network; and Cactus Cancer Society—to support others in connecting with resources that aid in areas she is passionate about: mental wellness, therapeutic creative expression, parenting, divorce after diagnosis, and disparities due to income and race.
Ms. James has lent her voice and experience to podcasts, including Our MBC Life, Dear Cancer, I’m Beautiful and on panels for organizations, such as Infinite Strength and SHARE. After taking notice of rampant death anxiety within the cancer community, she ventured into deathcare work as a death doula to assist fellow patients in accomplishing necessary end-of-life planning while addressing fear.
Michelle founded The Fearless Warrior Project/Organization in 2021 with her daughter and serves as its CEO. She wanted to create a legacy for her children to be proud and leave her mark on the world as one of the most fearless and sexiest bald women alive. Michelle is a Certified Mental Health Coach, Certified Life Coach, best selling author, and Death Doula.
She is also a Tigerlily Lead Angel Advocate. Her mission is to help individuals address and overcome their emotional/mental traumas and embrace their fears. She empowers others to advocate for themselves and educates other cancer warriors about their rights, clinical trial options, resources and most importantly to be intentional about living life to the fullest. You can learn more about The Fearless Warrior Project at fearlesswarriorprojectllc.com.
