Triple Negative Breast Cancer
Finding out you have triple negative breast cancer (TNBC) can be shocking, and it may bring up a wide range of emotions as you try to process how it will affect your life. Take a breath and learn about your diagnosis and how TNBC is different from other types of breast cancer. Knowledge leads to empowerment, which will help you move forward proactively and confidently.
Many people are surprised to know that not all breast cancers are the same. At one time, breast cancer was considered to be one disease and was treated that way. Researchers now know that breast cancer is a complex disease characterized by mutations in genes and proteins that cause cells to grow out of control. Just as each individual and their tumor profile is unique, there is no “one-size-fits all” approach to treating breast cancer.
Knowing the background of the disease may help you wrap your head around your diagnosis of TNBC. Treatment advancements are now changing the traditional way doctors have treated TNBC, giving hope to many. While TNBC is primarily found in women, men can also be diagnosed with breast cancer and TNBC, specifically.
Plan for Shared Decision Making
Being proactive in your care allows you to be an informed partner as you coordinate with a multidisciplinary team of specialists, whose “collective wisdom” and perspectives can combine to provide the best treatment plan. You can do your part by learning as much as possible from reputable resources and asking questions along the way.
As you learn about your TNBC diagnosis, do not delay starting treatment. Seek treatment as soon as possible after diagnosis and engage in shared decision making from the beginning. Shared decision making is a collaborative process where health care providers and patients work together to make medical decisions. This partnership allows you and your health care providers to foster trust, improve outcomes and increase treatment adherence while respecting individual values.
It is best to share your treatment goals with your health care provider before beginning treatment. Goals may include fertility planning, being comfortable during treatment, proactively managing side effects, planning for an upcoming special event, continuing treatment until you reach remission and/or picking a treatment that gives you the best quality of life.
For example, let your health care provider know if you have a wedding or vacation planned within the next few months. Your treatment may be able to be adjusted around these special events so you can enjoy this special time without feeling the need to manage side effects.
Defining TNBC
Breast cancer is classified based on the presence of three common markers: the estrogen hormone receptor (ER), progesterone hormone receptor (PR) and the human epidermal growth factor receptor-2 (HER2/neu). TNBC is a type of breast cancer that is so named because it tests negatively for these three tumor markers. When these tumor marker receptors are negative, it means hormones and HER2 are not driving the cancer.
Additionally, TNBC has certain characteristics that make it distinct from other types of breast cancer:
- May be more advanced when it is diagnosed
- Can be more aggressive than ER+/PR+ breast cancers
- Tends to have a high rate of recurrence
- Might often be found in younger women
- Can generally affect more women with the inherited mutations in the BRCA1 gene
Understanding TNBC Subtypes
Scientists have discovered that TNBC tumors have differences in their molecular and genetic changes. These different TNBC subtypes can affect the likelihood of treatment response.
- Basal-like tumors look similar to the basal (outer) cells around the mammary ducts. The majority of TNBC tumors are basal-like, and they can either be immune enriched or without immune enrichment. The immune-enriched tumors contain immune cells, which indicate they may respond to immunotherapy. The tumors without immune enrichment show sensitivity to chemotherapy, meaning that chemotherapy may offer more benefit to these patients.
- BRCA-mutated TNBC indicates tumors that are driven by this mutation. Research shows that some TNBC patients do have the BRCA1 mutation. The BRCA2 mutation is also found in TNBC, but less frequently. Some targeted therapies are available to treat TNBC with BRCA mutations, and research is ongoing to find and develop others.
Since some TNBC cases are associated with BRCA mutations (especially BRCA1), genetic testing is recommended for all patients diagnosed with TNBC prior to age 60, regardless of their family history. Ask your health care provider about genetic testing to find out whether you have a BRCA1 mutation and to potentially help identify treatments and/or clinical trials that will be most appropriate for you.
Consider a Second Opinion
Once you receive a TNBC diagnosis, you may decide to see a health care provider or cancer center with experience treating TNBC cancer. Do not hesitate to ask your doctor for guidance in obtaining a referral.
Seeking a second opinion is recommended for multiple reasons. Health care providers bring different training and experience to treatment planning. Some may favor one treatment approach, such as a clinical trial, while others might suggest a different combination of treatments.
Finding Support
A breast cancer diagnosis is alarming at any age. It can be especially difficult if you are in the middle of starting or raising a family and/or career. It is important to know that you are not alone.
A wide range of support is available to assist you through your journey. Taking the initiative to seek out others who have had TNBC can be a proactive step in ensuring your mental health.
Caregivers assist you with daily living tasks, such as accompanying you to medical appointments, dispensing medications, changing drainage tubes and helping with personal care and running errands. Consider building a team of caregivers instead of relying on only one person. Start with your family and friends, but be prepared to go outside of your community to find help.
Case managers and patient navigators, also called patient advocates, help with questions and issues related to your cancer care. Available at many hospitals and medical centers, they can help you with
filing insurance claims, paying medical bills and arranging for transportation. They can connect you with financial experts who are skilled in planning for and managing the cost of cancer care as well as assisting with insurance questions. They also may be your primary source for patient education and/or help connect you to resources for holistic support, which treats the whole person with a mind, body and spirit approach.
Mental health professionals have specialized training to talk to patients and their families about emotional and personal matters and can help them make decisions. Ask your health care provider for referrals or recommendations.
Support groups, both online and in person, offer you the chance to talk with others who are facing the same challenges and enable you to share knowledge about your cancer.
Advocacy organizations offer peer-to-peer support through programs that match the patient with a person who has had a similar diagnosis. Being able to talk with someone who knows what you are going through is extremely helpful. Ask your nurse navigator, case manager or patient advocate for a recommendation.
Financial assistance may be offered by the hospital or clinic where you’re being treated, advocacy groups and financial assistance organizations.
Using the Patient Portal
A patient portal is an easy way for you and your health care provider to communicate outside of an office visit. It is convenient and helps you stay informed and involved in managing your health.
This secure website and/or phone app gives you 24-hour access to your current and past health information, including medications and test results. Many portals offer the ability to securely message the health care provider, request prescription refills, schedule non-urgent appointments, update contact information, download and complete forms, receive email reminders and alerts, and more.
The online portal is a valuable tool, but it should not be used for urgent issues or in place of seeing your health care provider in person. And, be aware that you may be able to view test results before your provider has a chance to discuss them with you. So, although you are anxiously awaiting your results and are likely checking the portal frequently, your health care provider has certain times set aside to review patient information. Try to be patient.
Ask your health care provider if they offer a portal. If so, they will provide you with instructions for setting it up, and you will choose a secure username and password. Privacy and security safeguards are in place to protect your information.
Myths vs Facts
For some people, triple negative breast cancer (TNBC) has a negative reputation that has resulted in some common misconceptions that are just not true. There are many reasons to be hopeful about the future of treating TNBC. Learn more by reading the facts behind these common myths.
Myth: TNBC is always hard to treat.
Fact: Many people with TNBC are treated effectively and usually have successful breast-conserving surgery. Although the disease is not likely to respond to hormone therapy or anti-HER2 drugs, it may respond to other standard treatments for breast cancer – chemotherapy, surgery and radiation therapy.
Myth: There are no new treatments for TNBC.
Fact: Tremendous progress has been made in treating early-stage and metastatic TNBC. Today, TNBC patients may benefit from newly approved targeted therapies and immunotherapy that were previously unavailable even just a few years ago. The future is bright for more TNBC research that may lead to possible treatment options.
Myth: TNBC always requires a mastectomy.
Fact: The treatment plan developed for you will be tailored to your specific cancer, including the tumor size and stage, and whether you have inherited a genetic mutation. Talk with your health care provider about whether you are a candidate for either lumpectomy (breast-conserving surgery) or a mastectomy. In some cases, lumpectomy may be possible after chemotherapy has shrunk the tumor.
Myth: TNBC always comes back.
Fact: All types of breast cancer can have a recurrence. Even though TNBC has a high rate of recurrence, it does not always return after treatment. Several factors will impact that risk, such as the stage, receptor status, the cancer’s response to treatment and whether the patient follows the treatment plan.
Myth: Only certain ethnicities, such as African-Americans, get TNBC.
Fact: People of all races can be diagnosed with TNBC.
