Questions & Answers about Triple Negative Breast Cancer

Triple-negative breast cancer has gained much attention over the past few years, but is still relatively new to researchers. Researchers have discovered that there are many variations of triple-negative breast cancer, and about 15-20% of breast cancer diagnoses in the U.S. are triple negative.

The treatment of triple-negative breast cancer does not vastly differ from other types of breast cancer, and would typically involve the options of surgery, chemotherapy, and radiation. Some of the studies being performed at this time are on already existing chemotherapies; others are on newer medications including PARP inhibitors, angiogenesis drugs, and tyrosine kinase inhibitors.

Because much of triple-negative breast cancer is under investigation, participating in a clinical trial can be helpful to advance research. Depending upon the clinical trial, a patient can join at various stages of treatment and post treatment. The Triple Negative Breast Cancer Foundation has a partnership with EmergingMed that offers a clinical trial matching service in order to make your search faster and easier. You can call them at 877-769-4827 or visit www.emergingmed.com/networks/tnbcf to speak to a clinical trial navigator.

It is very important to discuss a follow-up care plan with your oncology team. During follow-up appointments, you should discuss with your doctor any changes in your body. Typically, a follow-up plan includes physical exams, mammograms, bone health tests, and blood work. Additional follow-up may involve scans, but that is not as common. A follow-up care plan should best meets your needs and your doctor’s recommendations.

Questions to consider for follow-up visits include:

• How often are my follow-up appointments?
• Will the frequency of my appointments change over time?
• What will happen during these follow-up appointments?
• Is there anything I can do to improve my lifestyle that may directly impact my risk of recurrence (e.g., changes in nutrition, exercise, or stress levels)?
• What are common longer-term side effects of my cancer treatment, and how long might they last?
• Are there any resources to help pay for my medical bills?
• When is it medically safe to return to work, and should I perform light-duty tasks when going back?
• Where can I join a support group for post-treatment survivors?

CancerCare offers a variety of educational workshops and publications, along with supportive services for post-treatment survivors. We currently offer face-to face, telephone, and online support groups specifically for people who have completed treatment. View all of CancerCare’s post-treatment resources.

Triple-negative breast cancer is a subtype of breast cancer. Although breast cancer is often referred to as a single disease, there are many types of breast cancer tumors. In fact, breast cancer can be described as a family of diseases. All breast cancers start in the breast. So, they are alike in some ways, but also can be quite different from each other.

Subtypes of breast cancer are generally diagnosed based upon the presence, or lack of, three “receptors” known to fuel most breast cancers: estrogen receptors, progesterone receptors and human epidermal growth factor receptor 2 (HER2). None of these receptors are found in women with triple-negative breast cancer. In other words, a triple-negative breast cancer diagnosis means that the tumor is estrogen receptor-negative, progesterone receptor-negative and HER2-negative, thus giving rise to the name “triple-negative breast cancer.” Because of its triple-negative status, triple-negative tumors generally do not respond to receptor-targeted treatments. Despite not having a targeted therapy as a treatment option, chemotherapy is an effective treatment. Research shows that triple-negative breast cancer may even respond better to chemotherapy than other types of breast cancer. Surgery and radiation therapy are also usually options.

Each person’s cancer is different, and so there is no one-size-fits-all treatment for triple-negative breast cancer. New research suggests that even within triple-negative breast cancer, there are many subtypes. Therefore, the best treatment plan is one that your medical team carefully tailors to your unique situation. Generally speaking, treatment for triple-negative breast cancer commonly consists of surgery, chemotherapy (given neo-adjuvantly – before surgery – or adjuvantly – after surgery), and radiation. Even when surgery appears to successfully remove all visible cancer, chemotherapy is often given as systematic therapy, as it treats the whole body by moving through the bloodstream. Chemotherapy adds an extra layer of protection against cancer recurrence because there is a chance that tiny cancer cells could remain in the body after surgery. Triple-negative breast cancer is uniquely chemosensitive, meaning that chemotherapy is a very effective treatment for this subtype of breast cancer. Common chemotherapies for triple negative breast cancer may include an anthracycline such as Adriamycin, alkylating agents such as Cytoxan, and a taxane, such as Taxol or Taxotere. Fluorouracil (5FU) may be given as well. Often a combination of drugs, or a “chemo cocktail,” is given to disable and kill cancer cells. Genetic testing may be conducted to determine if you carry genetic risk factors for recurrence or a second cancer. There is a wealth of information on treatment for triple-negative breast cancer on the Triple Negative Breast Cancer Foundation’s website.

Clinical trials for triple-negative breast cancer should not be overlooked. Clinical trials offer the chance to try new, promising treatments before they are available to the public. Clinical trial participants are volunteers and can withdraw from the trial at any time. Trials move through three phases that analyze different aspects of a medicine such as safety, how well a treatment works for a certain type of cancer, and comparison to how well the new treatment works versus the established, approved treatment. In addition to personal benefit, clinical trials pose an opportunity to contribute to science, and help women in the future who will be diagnosed with triple-negative breast cancer. It is critical to be informed about clinical trials early on, as many trials exclude patients who have received previous treatment. Ask your medical team about clinical trials. You may also search online using BreastCancerTrials.org or The Clinical Trials Matching Service.

I strongly encourage you to speak with your medical team about why a specific treatment plan was recommended for you.

When it comes to changes in our bodies, no matter what a woman’s age, those changes will challenge how we see ourselves and our perception of how others see us. This can be especially true for women who have had a mastectomy or bilateral surgery since images in the media so often place a heavy emphasis on how women look. Breast reconstruction has helped many women redefine their feelings about the loss of a breast. You might want to consult with a plastic surgeon about what options are available to you. For women who do not choose reconstruction, the use of a breast prosthesis can be a good alternative. A prosthesis can give a look of symmetry; many of the newer prostheses are made of a lighter weight material and come in special forms that can be used in swimwear and night gowns. It’s important to recognize that this is a loss, and with loss comes grief. Remember that it will take time to adjust and it’s a good idea to reach out for support and guidance during this time.

Treatment for breast cancer such as chemotherapy or hormonal blockers may also have side effects that can produce early menopause, vaginal dryness, and a diminished desire for intimacy. Talking with your doctor about products that can reduce symptoms of dryness or discomfort can help. Opening a conversation about your concerns with your partner is an important first step. Many people don’t understand the actual physical basis for diminished desire and feel they are being rejected.

How to Help Your Wife (and Yourself) Through Diagnosis, Treatment and Beyond (Rodale Inc.), by Mark Silver, is one book you and your partner might find helpful. In addition, you may try contacting Living Beyond Breast Cancer.

CancerCare offers some limited financial assistance that may be able to help with costs associated with transportation, child care, home care, or lymphedema garment costs. To determine if you are eligible and receive an application, please contact our Hopeline at 800-813-4673. Here are some additional sources of general financial assistance:

• Triple Step Towards The Cure: 424-258-0313
• The Pink Fund: 877-234-7465
• Breast Cancer Charities: 936-231-8460

If you are seeking assistance with lodging during treatment, there are some organizations that focus on providing reduced or free lodging when staying out of your area for treatment. You may want to contact American Cancer Society’s Hope Lodge program (800-227-2345), Joe’s House (877-563-7468), or the National Association of Hospitality Houses (800-542-9370).

If your treatment involves air travel, it may be helpful to contact Air Charity Network (877-621-7177), Lifeline Pilots (800-822-7972), or Corporate Angel Network (914-328-1313).

CancerCare provides wigs and breast prostheses free of charge to those in our New York City area. To request an appointment, please contact our Hopeline (800-863-4673). For those in other parts of the county, I recommend contacting your local branch of American Cancer Society as they may have a wig program. You can contact their hotline at 800-227-2345 or use the locator on their website. Also, if you haven’t already, you can ask at your treatment center if they have a wig program as many have wigs available to clients. Finally, you may be able to get wig costs covered or partially reimbursed through your medical insurance. It sometimes requires your doctor to write a prescription for a “cranial prosthesis.” If you have medical insurance, I would suggest contacting your insurance and inquiring if you have a wig benefit and how that process would work.

As you mentioned carrying the BRCA1 gene, I wanted to also note that the organization FORCE (Facing Our Risk of Cancer Empowered) provides services and supports to those impacted by and hereditary breast cancer.

Thank you for bringing up this very important topic; it is a concern that is very frequently voiced by individuals who have completed their treatment for TNBC. Although many women who have had breast cancer struggle with fears of recurrence, I feel that recurrence concerns are especially pronounced in the post-treatment TNBC population. Many women who have had TNBC indicate that the lack of recurrence prevention available (such as the hormonal therapies typically offered to women with hormone-receptor positive breast cancers) compounds their recurrence concerns and may bring about feelings of helplessness. I commend you for recognizing you need some additional supports at this time.

There are many organizations that can assist those who are in the post-treatment phase of TNBC. First, CancerCare offers free psychosocial supports for survivors that can include counseling, educational materials and an online support group for those who are post-treatment survivors of any cancer diagnosis. For more information about any of CancerCare’s free support services, please contact our Hopeline at 800-813-4673 or view our services online.

The TNBC Foundation offers a very active online forum for individuals in treatment as well as survivors, and can be a place to access peer support. Additionally, you may consider “peer matching”, where you can be matched to another woman who has undergone a similar experience to have one-on-one phone calls. Sometimes it can be exceedingly helpful to talk to someone else who has “been there” and understands what you are feeling. Two organizations that provide this service are Living Beyond Breast Cancer (888-753-5222) and SHARE (844-275-7427). The Young Survivors Coalition is another organization that provides resources and supports to those post-treatment, focusing on women who were diagnosed at a younger age.

Finally, some post-treatment women find that they benefit from individual counseling to address the concerns and emotions that arise after treatment ends. If you’d like to find professionals in your area that have expertise working with individuals impacted by cancer, you can call the American Psychosocial Oncology Society (APOS) at 866-276-7443. Please know that you are not alone in experiencing recurrence concerns, and that there is support available to you.

For more information, please read:

• “Coping with the Fear of Recurrence” Fact Sheet
• “Tools for the Adult Cancer Survivor” Booklet

When coping with a diagnosis of triple-negative breast cancer, it is important to ensure that your medical team is well-informed about the latest research and best practices. While we are unable to recommend or endorse a specific doctor, here are some suggestions for seeking out a breast cancer specialist who is experienced with treating triple-negative breast cancer.

• The National Cancer Institute has designated cancer centers throughout the United States and provides information on doctors practicing in your area. You can access their online database or call them at 800-4-CANCER.

• Ask your current doctor for a referral. Many people may feel hesitant to ask for a second opinion for fear of creating an uncomfortable relationship with the doctor. But be assured that a second opinion is considered a routine and necessary component of one’s health care plan. In fact, most medical professionals expect their patients to receive a second opinion.

• Researching clinical trials in your area will allow you to learn which doctors are participating, and get an idea of specialists in the field. A free, confidential resource to locate clinical trials accepting women with triple-negative breast cancer is The Clinical Trials Matching Service website and helpline: 877-769-4827.

• Contact the local county medical society, hospitals or breast cancer center in your area.

It is perfectly acceptable to ask doctors how many of their patients have TNBC, and how familiar they are with treating this subtype of breast cancer.

To answer your second question, getting support from other women who have experienced triple negative breast cancer can be a valuable tool to feel less alone and more empowered. Organizations such as Living Beyond Breast Cancer and the American Cancer Society provide a service called peer matching, in which you can be paired with a volunteer who had a similar diagnosis. The Triple Negative Breast Cancer Foundation has a very active online forum where people impacted by TNBC discuss various topics. There may be support groups in your area where you can connect with peers, as well. Your oncology social worker is a good resource for local referrals.

Many individuals and families impacted by TNBC have questions about genetic testing and its implications. It is first important to note that today there are numerous genetic testing panels, and that the currently available genetic tests are not able to pinpoint increased risk of a specific subtype of breast cancer but rather increased risk of breast cancer in general; there is not a genetic test at this time that is looking specifically for risk of triple negative breast cancer. Triple negative breast cancers and BRAC mutations have a higher percentage of being linked, but it is also important to note that the BRAC mutation accounts for a small percentage of overall breast cancers and not all cases of TNBC are caused by a genetic mutation.

As we are a staff of social workers at CancerCare and are not medical providers, I cannot provide specific medical guidance or treatment/testing suggestions. What I can share generally is that genetic testing (including the BRAC panel and others) can potentially have a physical, emotional and financial impact on the individual being tested as well as their family members. For this reason, it is always encouraged that you speak to your treating medical team as well as a genetic counselor prior to being tested so that appropriate guidance can be provided about what the test results may mean for you and your family. Receiving a negative genetic testing result means that you do not carry specific genetic mutations that are linked to an increase risk of breast and certain other cancers, but a negative result does not mean that one will never receive a breast cancer diagnosis. If an individual diagnosed with TNBC receives positive genetic testing results, having that information may impact not only the treatment and future health decisions of that person, but can aid that individual’s children and family in making decisions about genetic testing for themselves and their own health.

This is a very important topic, and it is understandable that genetic testing may raise questions and concerns. For additional information on genetic mutations and hereditary cancers or to speak to a genetic counselor for preliminary guidance, you may want to contact FORCE (Facing Our Risk of Cancer Empowered). They can be reached by phone at 866-288-7475 or emailed at info@facingourrisk.org.

For women undergoing breast cancer treatment and those in the survivorship phase, lymphedema can pose new challenges at an already difficult time. Unfortunately, despite ongoing advocacy efforts, there is minimal insurance coverage for lymphedema garments including the sleeve and gloves that your sister was encouraged to obtain. For many women, the large out of pocket expense of the garments can be a significant financial challenge. There are some resources that exist to assist women in purchasing the lymphedema supplies that they need.

CancerCare may be able to assist with a one-time grant for the purchase of lymphedema supplies. To determine eligibility, you or your sister would call our Hopeline at 800-813-4673 and speak briefly with an oncology social worker. If eligible, a brief application would be mailed to your sister for completion.

There may be other local organizations that provide assistance for lymphedema supplies. Our Hopeline social workers would be happy to explore potential resources for your sister. We can be reached Monday through Thursday from 9 a.m. - 7 p.m. Eastern Time and Fridays from 9 a.m. - 5 p.m. Eastern Time.