Are there any recent research findings or treatment developments for triple-negative breast cancer? With a high risk of recurrence, what is the recommended follow-up? What questions should I ask my doctor?A.
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. Additonal 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.
I have heard about triple-negative breast cancer, but I really don't know what it is. Could you explain?A.
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.
Is there a way to find triple-negative breast cancer specialists? And are there specific support groups or programs to speak with women with triple-negative breast cancer?A.
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.
Where can I find treatment guidelines and recommendations for triple-negative breast cancer?A.
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.
I've just started treatment for breast cancer and I need to talk about my fears and concerns with the people who are closest to me. But my family just says, "Oh, you'll be fine" and to stay positive. How I can I get them to listen?A.
It’s often frustrating to hear our loved ones tell us that everything will be okay and to just think positively. It can feel dismissive and uncaring. However, our friends and family often do not intend to sound unsupportive, but may find it difficult to hear that you are struggling because they care about you so much. Or they might rush to comfort you, thinking that it’s helpful to tell you that things will be fine.
It’s absolutely okay to see things from a more optimistic perspective, or to have hope that things will get better, but trying to force yourself to think positively all the time adds more pressure and stress and can make you feel worse. It’s preferable to let yourself feel the negative emotions, as well as embracing the positive ones. If you try to shut off your fears and worries, it can make you hold onto them longer.
Try telling your friends and family that you appreciate their concern and realize that they’re just trying to be helpful, but that it is in fact more supportive if they just lend you an ear and a moment. Let them know that you are not asking them to solve your problems, that you just need to express your feelings. Sometimes you’ll have bad days and need to vent.
Ask them if they can shoulder some of your burden, just by listening, knowing that you would do the same for them. If they cannot, consider talking to an outside professional instead, like a CancerCare social worker. Sometimes you need a more objective person to create a safe space for all your feelings, positive and negative.
Our Connect Education Workshop Helping Cancer Patients and Their Families Cope with the Stresses of Caregiving might be helpful for you and your loved ones to listen to.
Remember, not all families can respond in ways that will be helpful. A support group might be useful to you as a way to connect with others who understand how you are feeling. CancerCareoffers groups in-person, over the telephone, or online. You can also contact us at 800-813-HOPE (4673) and speak with an oncology social worker.
I am 40 years old and had my first mammogram. It showed an area that they believe is probably benign (not cancer). They said that I have dense tissue and that it can be harder to evaluate the results. What can I do? How can I help myself?A.
It is common for younger women who have not yet entered menopause to have dense breasts. Breasts consist of milk glands and ducts, fatty tissue, as well as connective tissue. Fatty tissue appears dark or transparent on a mammogram, making it easy to see through. However, connective tissue shows up as white on a mammogram, making it difficult to detect cancer which also appears white. Think of it as looking for a polar bear in a snowstorm. If a woman’s breasts consist of mostly connective tissue, they are considered “dense.” Some states now require doctors to inform their patients that they have dense breasts, as dense breast tissue can obscure cancerous tissue.
In order to get a better look inside dense breasts, other imaging techniques may be used in addition to mammogram. For instance, your doctor may recommend a breast MRI, which uses magnets instead of radiation. Or, he or she may suggest a breast ultrasound, which uses sound waves to investigate areas of concern picked up on a mammogram. Each test has different benefits and risks, so it is best to talk with your doctor about which makes the most sense for you as an individual. It may be helpful to know that 80% of breast changes are benign, or not related to cancer.
I applaud you for being proactive about your breast health.
My sister has stage four breast cancer, which is now gone to her bones and other places. My question is, I would like to see her remaining months happy and would like to see her smile, though with her bad teeth from the chemo her teeth are all broken or dead, she can't afford to get them fixed. Do you know where we could get help for her?A.
I am sorry to hear of the impact chemotherapy had on your sister’s teeth. Dental health is important both during and after cancer treatment, but lack of dental insurance and high out-of-pocket costs can make even a routine dental visit a hardship for individuals already burdened by medical bills. There may be ways to obtain dental procedures or check-ups at a more manageable cost. First, local dental schools often run low-cost or sliding-scale fee clinics for routine dental call or minor procedures; if there is a dental school near your sister, they may be a good first point of contact. The American Dental Association provides an online dental school locator. Second, the Dental Lifeline Network offers an online database of free or reduced cost dental services in each state. Keep in mind that because of limited resources and often high demand, the availability of programs can vary and there may be a waiting list.
Additionally, the U.S. Health and Human Services Department maintains a list of local health clinics in each state that provide sliding-scale fee health services. While the main focus of these clinics is on primary medical care, some centers have oral health/dental services available. Utilize the online map to locate programs in your sister’s area, and then contact them directly to inquire about dental services.
Finally, if your sister had a general dentist she’s seen in the past, it may be worthwhile to contact that provider and see if he/she has any recommendations. Offices are sometimes willing to work out a payment plan for more costly services that would potentially allow your sister to get the procedures she needs.
Connect Education Workshop Podcasts on Dental Hygiene:
How do I tell my 5-year-old child that my mother-in-law has breast cancer?A.
I am sorry to hear of your mother-in-law’s diagnosis. Many adults struggle with how to tell children about a family member’s cancer in an age-appropriate way, and it is normal to have some anxiety about the conversation. First, it is important to consider your own feelings and how they may impact the conversation you have with your child; try to find a time to talk when you and your child are feeling calm and the environment is quiet. It can be beneficial to use the word “cancer” when informing your child, as young children may hear “grandma is sick” and have trouble differentiating grandma’s experience from a time when the child was “sick”. Be sure to reassure your child that no one did anything to cause grandma’s cancer; sometimes children may feel the cancer is a result of the child misbehaving. It is also helpful for the child to hear that cancer is not something they can “catch” like a common cold. Provide some basic information about what the treatment plan will involve and reassure that grandma has support (for example, “Grandma is going to take some very strong medicine (chemotherapy) for her cancer. The strong medicine may make her hair fall out for a little while, so you may see Grandma wearing hats. The doctors are working hard to help Grandma.”).
Keep in mind that young children can have short attention spans and allow them the time they need to process the information; they may run off to play right after you tell them, and then ask questions at another time. Some children may be sad and ask questions right away. Be sure to let your child know that it is okay to have the feelings they have about Grandma’s cancer and that they can always talk to you or ask questions. You may want to acknowledge that the adults in the family are also having feelings, to further normalize them for your child (for example, “Mommy sometimes feels sad about Grandma’s cancer. If you’re feeling sad we can talk about it together.”).
Overall, remember it is okay to not have all the answers. This likely will not be a one-time conversation but an ongoing discussion throughout your mother-in-law’s illness. The oncology social workers on the CancerCare Hopeline (800-813-4673) are here to help if you need some additional support around this discussion.
My sister has breast cancer, and now she has lymphedema as a result of her breast removal. Her therapist wants her to get a sleeve and glove. She went to be fitted and found the cost would be about $340. Medicare nor insurance will pay anything on this. Is there any funding available for this expense?A.
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.
First, 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.
The National Lymphedema Network offers a garment fund for women who demonstrate a significant financial need and whose physical therapists are members of their network. Your sister should ask her therapist if they are a member, and if so, additional eligibility information can be found on the website.
The All4One LympheDIVAS’s Program may be able to offer free/or reduced cost supplies for a limited number of women monthly. For more information about financial eligibility and other criteria, please see their website.
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.