Q. 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?
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.
Q. Where can I find treatment guidelines and recommendations for triple-negative breast cancer?
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.
Q. My mom was recently diagnosed with breast cancer and she has to pay almost $500 in co-pays for her medicine. How can we get help?
Unfortunately, having insurance doesn’t guarantee that patients will be able to afford their treatment. Even with insurance coverage, out-of-pocket expenses such as co-pays for medications can add up very quickly. Your mother is not alone in struggling with these costs.
Sometimes, cancer drug manufacturers will offer patient assistance programs to financially assist people like your mother who are struggling. To find out if such a program exists for your mother, please contact the Partnership for Prescription Assistance at 1-888-477-2669.
In addition, there are organizations that offer co-pay relief for chemotherapy and cancer medications. Funding can vary and depends on the cancer type, so call before applying to confirm availability. One such program is the Patient Advocate Foundation Co-Pay Relief Program, which provides direct financial support for co-pays to insured patients who financially and medically qualify. For more information call 1-866-512-3861 or download an application. You may also try contacting the Chronic Disease Fund at 1-877-968-7233.
And finally, you can search for financial help through a website created by the Cancer Financial Assistance Coalition.
Q. I fear I have breast cancer...I have no insurance and lost my job. My symptoms have become too huge to ignore. What can I do?
I am sorry to hear about all that you are dealing with—this must be a stressful time full of uncertainty. It is certainly important to be aware of changes in your breasts and to seek medical attention when you notice unusual symptoms that persist for a period of time. But keep in mind, too, that 80% of breast lumps are not cancerous. For instance, breast cysts, fibroadenomas, and infections are all considered to be benign, or not related to cancer.
That said, you should contact the National Breast and Cervical Cancer Early Detection Program (NBCCEDP), to locate a free screening program. Medicaid coverage is available through the program to women who have been screened and diagnosed with cancer. For more information go to the NBCCEDP website or call 1-888-842-6355.
The thought of having cancer can be upsetting and overwhelming. Are there people in your life to whom you can turn for emotional support? You may find it comforting to bring a trusted loved one along to appointments. Not only will you have a hand to hold, but you’ll have an extra set of eyes and ears to help you take in information. I also welcome you to call CancerCare and speak with one of our professional oncology social workers at 1-800-813-HOPE (4673). Oncology social workers have professional training to counsel people coping with cancer and help them access practical assistance. They are available to help you manage emotions such as anxiety and sadness, find reliable information, and locate resources in your community. Read more about CancerCare’s free, nationally-available services.
Q. I was diagnosed with breast cancer in late 2010. I received 6 rounds of chemotherapy, and I still experience severe knee pain. Is this pain related to the chemotherapy and when will it end?
It is not uncommon for people who have undergone chemotherapy and other cancer treatments to experience long-term side effects. For example, certain breast cancer treatments such as chemotherapy and hormonal treatments may contribute to bone loss, which could cause knee pain (view our bone health resources). Your body’s reaction to cancer treatment depends on factors such as treatment length, dosage prescribed, and your personal health history. Most side effects are temporary, but some can last for some time after treatment is over.
It is important to discuss your symptoms with your medical team so you can find some relief. Are they aware of your knee pain? I would strongly encourage you to tell your doctor about your concerns if you haven’t already. He or she is in the best position to investigate whether your pain is chemo-related. In the event that your doctor is not accessible, your nurses and oncology social workers are great resources. Nurses have a wide range of skills and are usually in charge of implementing the plan of care your doctor has set up for you. They are trained to administer medication, monitor side effects, and educate you on the medications you are receiving. Oncology social workers are professionally trained to counsel people affected by cancer and help them access practical assistance. They can also act as a liaison between you and members of your medical team. CancerCare offers a free podcast with tips to help you plan for your post-treatment medical appointments, Communicating With Your Health Care Team After Treatment: Making the Most of Your Visit.
Finally, many people find it helpful to keep a record of side effects to bring to your next appointment. You can create a daily journal that details information such as when the pain occurred and for how long, how strong was the discomfort/pain using a scale of 1-10, and how the side effect impacts your daily activities. Learn more about our resources on coping with pain.
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Answers from Other Experts About Breast Cancer
Q. 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?
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. CancerCare offers 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.
Q. I had a lumpectomy and lymph nodes removed for breast cancer in January 2013 and was out of work until July due to complications. I have insurance, but am left with a stack of bills that I owe for my care during this year. My insurance has a $600 deductible, and I have to pay 20% of what my insurance does not cover. I am unable to find any help other than for the medication related to the cancer and am extremely stressed over this. My husband is disabled and on a fixed income. Is there any help out there for co-pays and deductibles not related to medication? Thank you for any help you can give me.
Even with insurance, most people will have out-of-pocket costs for their medical care. This can include but is not limited to co-payments, medications, transportation and living expenses such as rent /mortgage, utilities, car payment, insurance and food.
Finding help for out-of-pocket expenses can be a challenge. The following websites offer possible resources:
- The American Cancer Society’s searchable database
- The Patient Advocate Foundation’s National Financial Resource Directory
- The Cancer Financial Assistance Coalition’s searchable database
You may also find additional helpful information in our fact sheets on finding financial assistance in your community:
CancerCare’s staff of oncology social workers can also provide you with emotional support and help you search for local resources: 800-813-HOPE (4673).
Q. I have metastatic breast cancer. I drive from Spartanberg, SC to Charleston, SC once a month and stay over for about two nights for treatment. Is there any help you give for transportation and/or lodging costs?
CancerCare offers limited assistance for transportation, home care and child care for women who qualify. Limited funds are also available to assist with certain oral, pain, and anti-nausea medications, lymphedema supplies and durable medical equipment. Please call us at 800-813-HOPE (4673) to apply.
Patient Advocate Foundation offers a one-time grant of $300 for qualified patients to cover expenses for lymphedema care and supplies, durable medical equipment, transportation costs associated with getting to and from treatment, prostheses and wigs or child care and/or elder care necessitated by treatment. Eligible patients include those who have been diagnosed and are in active treatment for breast cancer who fall within 250% or less of the federal poverty limits. For more information, call 855-824-7941.
American Cancer Society’s Road to Recovery program provides transportation to and from treatment for people who have cancer and either do not have available transportation or are unable to drive themselves. Volunteer drivers donate their time and the use of their cars so that patients can receive the treatments they need. Call 800-ACS-2345 to find out if Road to Recovery is available in your community.
Joe’s House is an online database listing thousands of places to stay across the country near hospitals and treatment centers that offer a discount for traveling patients and their loved ones.
Society of St. Vincent de Paul provides various services to people in need, including food programs, emergency financial assistance, emergency transportation, rent/mortgage assistance, free pharmacy services, budget counseling, referral services and more. To get help, contact the nearest Catholic Church in your community and ask if they have a Society of St. Vincent de Paul Conference in their parish or know of one close by. You can also look for “Society of St. Vincent de Paul” in your local White Pages or call 314-576-3993.
Finally, you can search for local resources through a website created by the Cancer Financial Assistance Coalition.
Q. I'm looking for help. I do not have insurance and do not think I qualify for any charitable help. I need surgery for breast cancer and chemotherapy. Is there anywhere I can get help?
I understand your concern about not having insurance and being diagnosed with breast cancer and needing surgery and chemotherapy. This can be overwhelming and I hope to guide you in the right direction so that you can find assistance.
Listed below are resources for people who have been diagnosed with breast cancer and do not have medical insurance to cover the cost of their treatment:
Susan G. Komen (www.komen.org or 877-465-6636, Monday–Friday, 9:00 a.m.–10:00 p.m., EST). They can assist you in locating your local affiliate that provides grants to local community-based organizations providing education, screening and treatment programs. Some of these programs may include financial assistance programs to those that are uninsured.
The Centers for Medicare and Medicaid has information on your state’s Medicaid program eligibility requirements. Medicaid is a free, state insurance plan that covers the cost of medical care to those who qualify. Please visit: www.cms.hhs.gov/home/medicaid.asp.
Many state and corporate prescription assistance programs help patients obtain free or low-cost medications. To learn more about the patient assistance programs (PAPs) that are offered by pharmaceutical companies and states, visit the Partnership for Prescription Assistance at www.pparx.org or call 888-4PPA-NOW (888-477-2669).
The Foundation for Health Coverage Education’s mission is to simplify public and private health insurance eligibility information in order to help more people to access coverage. You can visit their website at www.coverageforall.org.
A social worker at the hospital where you will be receiving treatment often can provide referrals to local sources of financial aid. In addition, it might be helpful to explain your financial situation to the hospital’s business office and your physicians. Professionals involved in caring for you are well aware of the economic burden that cancer imposes on patients and families. They might be able to develop a plan to reduce costs or extend payments over a longer period of time.
Other organizations that may be of assistance to you during this time include:
CancerCare offers limited assistance for transportation, home care and child care for women who qualify. Limited funds are also available to assist with certain oral, pain, and anti-nausea medications, lymphedema supplies and durable medical equipment.
Patient Advocate Foundation offers a one time grant of $300 for qualified patients to cover expenses for lymphedema care and supplies, durable medical equipment, transportation costs associated with getting to and from treatment, prostheses and wigs or child care and/or elder care necessitated by treatment. Eligible patients include those who have been diagnosed and are in active treatment for breast cancer who fall within 250% or less of the federal poverty limits. For more information, call 855-824-7941.
For additional support, I encourage you to call CancerCare’s Hopeline at 800-813-4673 to speak to an oncology social worker.
Q. My wife is receiving chemotherapy for breast cancer and I know the holidays will be hard. Do you have any suggestions as to what I can do to help her?
The holidays often represent a time of celebration and connecting with loved ones; coping with cancer treatment during this time can be stressful. Your wife may be experiencing side effects that make it hard to focus on the holidays alone, but there are many things that you can do to help her cope with the stress of treatment and to enjoy this holiday season. You can help your wife significantly by paying attention to both her physical and emotional needs, as well as your own.
Talk to your wife about how she wants to spend the holidays. You can also support her as she makes decisions about what activities she can tolerate this year. Managing expectations is an important part of coping with a cancer diagnosis, so consider what traditions she may need to take a pass on this year. Establishing new holiday traditions with close family and friends may allow her to feel more satisfied and supported.
Having an open conversation with her medical team about holiday plans can help provide guidance and support in managing side effects appropriately. They may be able to make dietary suggestions, offer advice on pain management, or make a more flexible treatment schedule if possible. This may help in keeping her focused on the meaning of the holidays rather than uncomfortable side effects.
Also, take good care of yourself this holiday season. As a caregiver, it is important that you think about your needs as well. Talk to friends, go for a walk, or spend alone time with your wife. Considering your own feelings will help to maximize the support you are able to offer your wife.
CancerCare offers publications to help you and your family cope with the holidays during cancer treatment:
You can also listen to CancerCare’s Connect Education Workshops that address coping with cancer during the holidays.
CancerCare’s professional oncology social workers can provide emotional and practical support to further help you and your family find ways of coping. Please call us at 800-813-4673 for support and practical help.
Q. I'm 32, and am in treatment for early stage breast cancer. I feel like I'm burdening my friends and husband with my anxiety, but I also need to talk. I'm looking for a therapist, but maybe there are other things I can do to help myself? My husband is supportive, but not very emotional.
Coping with cancer as a young adult is a unique experience. Building a strong support system and having someone to talk to can help address and cope with the emotional stressors you must be feeling. Support can come in many different forms. Many of these services are now easily accessible over the phone and online. CancerCare provides free individual and support group counseling with licensed oncology social workers and can also help connect you to resources within your community. Our supportive services are sensitive to the way a diagnosis of cancer is different when you are young.
These organizations specialize in providing support services to young adults with cancer:
- I’m Too Young For This
- Planet Cancer
- The Ulman Cancer Fund for Young Adults
- The Young Survival Coalition (for breast cancer survivors)
- Imerman Angels
You may also contact the American Psychosocial Oncology Society Helpline toll-free at 866-276-7443. Their referral program aims to connect cancer patients and their caregivers to local psychiatrists, psychologists, nurses, social workers and counselors skilled in the management of cancer-related distress.
In addition to seeking professional support there are many things one can do on their own or at home to help themselves cope. Here are some publications with practical tips that you may find helpful:
Q. I have heard about triple-negative breast cancer, but I really don't know what it is. Could you explain?
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.
Q. 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?
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.
Q. I've recently started treatment for breast cancer. What can I do to reduce my risk of bone fractures?
Some women’s breast cancer is estrogen receptor positive, which means that the breast cancer grows in response to estrogen. In these instances, your physician may recommend cancer treatments that block estrogen production. Many women develop bone loss as they age due to their decrease in estrogen production. Cancer treatments that block estrogen production have a similar effect in causing bone loss.
It’s important to ask your health care team:
- Will my treatment affect the strength of my bones?
- What can I do to reduce the risk of bone loss and risk of bone fracture?
Your health care team will be able to make recommendations to reduce the risk of bone fracture from bone loss which may include:
- Eating calcium rich foods, such as yogurt, cheese, leafy green vegetables, such collard greens and Swiss chard
- Exercising to strengthen the muscles that support your bones
- Using over the counter calcium (calcium citrate is more easily absorbed) and vitamin D supplements
- Taking prescription medication to strengthen bones
- Consulting with rehabilitation medicine specialists, including a physical therapist, to develop an exercise program that is safe and designed to meet your needs
The National Cancer Institute’s information specialists can provide evidence-based information on caring for your bones when you have breast cancer by calling 1-800-4-CANCER (1-800-422-6237) or visiting www.cancer.gov.
If you have additional questions about bone health, please contact CancerCare directly for information and guidance. CancerCare provides free professional support services, including counseling, education, financial assistance and practical help. If you have a specific concern or question and would like to speak with an oncology social worker, please contact us at 1-800-813-HOPE (4673).
For questions about medical issues, please visit Cancer.net, the patient information website of the American Society of Clinical Oncology (ASCO).
Q. I need information or possibly first hand knowledge of how Tamoxifen affects men. I am a male with breast cancer undergoing this treatment and I'm not sure how I'm supposed to feel but it doesn't feel normal. Can you help?
This is an important question and one that is not asked often, because of the rarity of male breast cancer. In fact, male breast cancer accounts for only 1% of all breast cancers. Men have a lifetime risk of about one-tenth of 1%, or one in 1,000, of developing breast cancer, according to the American Cancer Society. Most male breast cancers occur between the ages of 60 and 70, although a diagnosis can occur at any age.
All men have a small amount of breast tissue, which is located directly behind the nipples and produce a small amount of the female hormone, estrogen. Research has established that higher than normal levels of estrogen can result in gynecomastia, a condition in which the male breast is abnormally enlarged, or male breast cancer. Other risk factors that may lead to male breast cancer are: a family history of breast cancer, either male or female; overexposure to radiation of the chest area; cirrhosis of the liver; and obesity.
Male breast cancer can manifest as a firm, non-painful mass located just below the nipple or may cause skin changes on or around the tissue of the nipple such dimpling, redness, scaling, discharge or retraction. As with women with breast cancer, treatment depends on many factors, including the stage at diagnosis and the overall health of the patient.
Most male breast cancers are hormone-dependent, so estrogen-blocking treatments including Tamoxifen are often used. Possible side effects for men taking Tamoxifen include headaches, nausea, hot flashes, skin rash, fatigue, sexual dysfunction, and weight and mood changes. For more information about Tamoxifen and other hormonal therapies, read the National Cancer Institute’s, “Male Breast Cancer Treatment” and “Tamoxifen Questions and Answers”, and the American Cancer Society’s “Breast Cancer in Men”.
In addition to coping with treatment side effects, you may also be experiencing new feelings and emotions. From my research, most men state that having breast cancer doesn’t feel normal and this can create additional stress. I strongly suggest you talk to other men who have been diagnosed, both for support and also to learn new ways to cope with treatment side effects.
CancerCare offers publications about coping with treatment side effects, Connect Education Workshops, individual counseling, and support groups (online, telephone and face-to-face).
Finally, make sure you speak with your oncologist about any side effects or feelings you have, so that he or she can work with you to help you better manage your situation.
Q. I've just been diagnosed with breast cancer. Even with insurance, I have many out-of-pocket expenses. What organizations can help me?
Even with insurance, most people are unprepared for the out-of-pocket expenses for medical care. These expenses can include co-payments and medications for side effects, as well as costs for transportation to and from treatment and childcare. Covering general daily living expenses can also be challenging, especially if there is a loss of income due to the diagnosis and treatment.
There are organizations that offer financial help to people with cancer to cover some of the costs related to their diagnosis. Several specifically assist breast cancer patients.
CancerCare, for example, offers limited assistance for transportation, homecare, and childcare for women who qualify. Limited funds are also available to assist with certain oral, pain, and anti-nausea medications, lymphedema supplies, and durable medical equipment.
Some local divisions of the American Cancer Society may also have volunteer programs to help with transportation to treatment, as well as assistance with wigs and prostheses.
Co-pay foundations are independent charities that assist insured patients who qualify with the co-pay costs of their pharmaceutical products. Clients may contact each foundation for information but can apply only to one foundation. Learn more about co-pay foundations.
Finding help with daily living expenses can be more of a challenge. Breast cancer organizations like Susan G. Komen for the Cure often fund Safety Net Programs. Call Komen’s helpline at 1-800-I’M AWARE for the number of your local affiliate to find out if there is a program near you.
Also try the 211 referral line of your local United Way for links to community programs that assist with daily living costs.
CancerCare offers helpful fact sheets on finding financial assistance in your community:
Q. I'm trying to prepare myself mentally about having a mastectomy. I don't think I would ever want to look at my body again, much less expect my significant other to ever find me attractive. Not sure what to do...
A surgery that removes part of you is a loss and must be honored with mourning and grief. A loss changes you but also can make you more aware of what you still have. Most people need time to get used to the scars on their body. With patience and caring, couples do enjoy being intimate again. The following suggestions may help:
- Keep a journal in which you can freely express your thoughts and write down all of your feelings, both good and bad.
- Reach out to your loved ones. Let them know what kind of physical affection and comforting you need.
- Give yourself credit. Practice praising yourself about any of the things you like about yourself, such as your intelligence, your faith, your laugh, your kindness and other positive qualities.
- Be generous to yourself. Give yourself little gifts that give you pleasure such as a new book of poems, a massage, or a spa product.
- Take relaxing baths. Use music, candles, or flowers to enhance the experience.
- Adorn the new you. Get new make-up that complements your best features. Choose clothing colors that match your current skin tone. Seek out programs such as Look Good, Feel Better to learn helpful tips.
- Join a support group of women who have similar concerns. CancerCare offers online and telephone support groups and our oncology social workers can help you locate face-to-face groups in your area.
- Share information with your partner. Communicating your feelings (and having your partner do the same) is very important as you go forward together.
Q. I have been treated for breast cancer and I just don't feel like being intimate. Is this due to my treatments or did I just change as a person? My partner is concerned and wants to know if we will ever be intimate again?
For many women, treatment for breast cancer has a side effect of reducing their desire for physical intimacy. This occurs when your treatment has affected the amount of estrogen your body produces. There are ways for you to address your partner’s wish for physical intimacy. But one of the issues between the two of you may have something to do with communication. Openly discussing sex may not be typical even for couples who have been together for a long time. Reminiscing about the funny and tender things you have shared together, and your history of how you met and became a couple, can be a comfortable way to begin. Your sexual relationship is a part of being a couple, but there are many other parts to your relationship such as emotional closeness, feeling your partner is there to comfort and support you, affection, and companionship to name a few. Once you have addressed these aspects of being a couple, being physically intimate becomes a natural part of sharing your love with each other.
Being diagnosed with cancer often leads people to reevaluate their lives and sometimes this changes their priorities. If you have been satisfied with your relationship prior to cancer, then I’d expect you would be satisfied after treatment even if your relationship needs some fine tuning. Joining a support group or seeking counseling, whether individually or as a couple, can further help you and your partner.
To find a counselor who specializes in intimacy issues, contact the American Association of Sexuality Educators, Counselors and Therapists.
Q. Since being diagnosed with breast cancer, I can't seem to keep on top of things like I used to and it seems like I'm in a fog. I've mentioned this to my doctor but I think his focus is more on my treatment and less on my concerns. Anything I can say to make him listen?
After being diagnosed with cancer, many women report having trouble finding words and remembering things. Be persistent in communicating with your doctor about what you are experiencing. Here are some tips that may help you:
- Request a time to speak with your doctor to focus on your specific concerns
- Express how these concerns are affecting you and your quality of life
- Be specific and give examples
- Use statements such as, “I need your help understanding this” and “Do you have any suggestions on what I can do?”
It’s also possible that you may be experiencing side effects from chemotherapy. This is sometimes referred to as “chemobrain,” a condition that affects your short-term memory. You may consider getting evaluated by a neuropsychologist (an expert trained in how the nervous system, especially the brain, controls mental functions such as language, memory, and perception) who can assess any cognitive changes and suggest mental exercises to improve memory and thinking. Chemobrain usually lessens over time once treatment has ended.
A few steps you can take now to improve your memory:
- Keep a notebook or day planner where you can write down things you need to remember
- Keep the notebook in a specific place so you can find it when you need to
- Use Post-it notes to place reminders in your home, office or other spaces
To learn more about chemobrain, read CancerCare’s fact sheets:
Q. I was diagnosed with DCIS last year and my family's reaction has been "it's not really cancer". It hurts me that during my biopsies, lumpectomies and radiation, no one asked how I was doing. How do I get over the disappointment with my family and manage the stress of my own diagnosis?
Ductal carcinoma in situ (DCIS) is an early noninvasive form of breast cancer in which abnormal cells multiply and form a growth within a milk ducts of the breast. The term “noninvasive” means that the abnormal cells have not spread out of the milk duct into other parts of the breast. DCIS is normally found during a mammogram and confirmed by a biopsy. If left untreated, it is more likely to develop into invasive breast cancer so it is important to seek treatment.
During times of crisis such as health emergencies it is not unusual for friends, family members and loved ones to react in unexpected ways. Based on what you have shared, it sounds like your family’s response was unsympathetic and hurtful. Often times, loved ones think that they should only be positive or always look on the bright side. This can leave the patient feeling unsupported and unable to express his or her true feelings. I’m not sure if you’ve shared your feelings with your family, but sometimes people do not know what to say or do and need a little guidance.
Support groups can be an important part of overcoming your feelings of disappointment. Groups are a place where you find the support you need and feel heard and understood. Make sure to find a group that is a good fit for you; some organizations offer groups for women who’ve been diagnosed with DCIS or early stage breast cancer, including SHARE: Self-Help for Women with Breast or Ovarian Cancer.
I encourage you to be take care of yourself. You may want to explore individual counseling to work through your disappointment and stress. Learn more about counseling.
Q. My mother was recently diagnosed with metastatic breast cancer and about 2 years ago, began to show signs of dementia. Can you refer me to resources regarding providing care to patients with dementia and cancer? My elderly father is the primary caregiver and I am an out of town caregiver.
Dealing with a dual diagnosis of dementia and cancer brings many challenges regarding care. Start by assessing both you and your father’s needs as caregivers and the needs of your mother. What do you and your family need help with? Areas to consider are personal care, household care, health care, and emotional care. It is also important to discuss with your mother what her preferences for care are as much as she is able. If she is not able to discuss this, you and your father will want to consider what she would feel comfortable with.
The next step is to find support. State and federal agencies are good starting points for information about local programs and services. You can find your local office through the Department of Health and Human Service’s Eldercare Locator. The Family Caregiver Alliance, also has a wealth of information on caregiver support, as well as a state by state listing of services available. It is important to remember throughout your mother’s care that support is important not only for patients, but also for caregivers. You and your father’s needs must be met, so you don’t become overwhelmed and exhausted. To learn about ways to take care of yourself, please read, Caregiving for Your Loved One With Cancer, and So Far Away: Twenty Questions and Answers About Long-Distance Caregiving.
Q. I am a lesbian and my family is not accepting of this. I recently have been diagnosed with breast cancer, and I'm really feeling the loss of having family for support. I'm not sure if it would make a difference to speak with them - should I tell my family about my diagnosis?
You took a very courageous step by disclosing your sexual identity to your family, and their rejection can feel devastating especially during times of need. It is the most natural desire to want to be accepted by the people we love, and while some homophobic reactions may be intense, there are many shades of gray. In extreme cases, disclosure sometimes results in permanently severed relationships, but the coming out experience and the reactions of loved ones can be a process that evolves over time. It is understandable that you are concerned about communicating with your family given the risk of further rejection, but you may find that family members who have difficulty accepting your lesbian identity would want to be part of your life and be able to support you given the chance.
It is important that you seek out support from family, friends, co-workers, and healthcare professionals. CancerCare’s professional oncology social workers are here to help by linking you to practical support, education, support groups, or referrals. In addition to getting support around your cancer diagnosis, you can also receive counseling about your relationships with your family that can guide you toward the best course of action for you.
Learn more about our breast cancer services. You might also contact The National LGBT Cancer Network and The Mautner Project. Cultivating a network of support and sharing your experiences with others can be a liberating and self-affirming experience and I encourage you to explore these resources.
Q. I'm 43 years old, married and going to have a mastectomy. I'm insecure about how my body is going to look and being intimate with my husband. How can I maintain my femininity and a positive body image?
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.
You can also find additional information and advice in a previous Ask CancerCare that addressed body image and intimacy issues.
Q. My mom is about to undergo chemotherapy for breast cancer and there are so many chemotherapies to choose from. Can you tell me if a test is available to determine the best treatment prior to her starting treatment? What else might you recommend for her to do once she begins her treatment?
We have received several questions about treatment options, follow up and ongoing care. CancerCare is not a medical facility; rather, we are professional oncology social workers, so I will try and address your concerns generally. For any woman trying to make a decision as to what chemotherapy to be treated with, there are clinical practice guidelines established by the National Comprehensive Cancer Center (NCCN) to help physicians select the proper treatment in each individual’s case. There are also two tests available to women that can help them decide about treatment, and both tests provide information about the possible rate of recurrence of their breast cancer. The tests work with a specific type of breast cancer, estrogen receptor positive, and one such test, Oncotype DX, has been approved for payment by Medicare. Information regarding the other test is available at www.molecularprofiling.com but not does provide information whether they are approved for insurance payment. Before deciding on any treatment, make sure that your oncologist has a complete history of any additional medical problems and of any other incidences of cancer in the family. Lastly, if you have any uncertainties, seek out a second opinion.
After a diagnosis many women look for additional ways to prevent a recurrence and often explore complementary therapies as a way to help healing and promote their health. Activities such as yoga or mediation can provide a sense of peace and promote sleep and relaxation. There is little indication, however, that “natural” remedies such as vitamins or herbs have any effect on breast cancer. If you do decide to use herbal supplements, please be sure to let your doctor know since some can be harmful when combined with chemotherapy.
Learn more about CancerCare’s breast cancer services and resources.
Q. How long after completing breast cancer treatments can you still feel fatigued? Should I have any special follow-up?
For women who have had radiation as part of their treatment, it can take several months until their normal level of energy returns and most women report that it takes about a year after completing treatment that they begin to feel like their old selves. Remember each person’s response to treatment is different so be patient with your recovery. It might be helpful to join a support group to find out ways others are managing these challenges.
Fatigue is one of the most common complaints of women dealing with breast cancer. Whether it is caused by chemotherapy, radiation, taking an aromatase inhibitor or simply by stress it needs to be addressed. The first thing to do is to discuss with your doctor why you are so tired and what can be done to help.
There are some simple things you can do to help yourself:
- Pace yourself but try to stay active; conserve your energy for your priorities and find your own comfort level
- Take power naps, a 30-minute nap can help without disturbing your night’s sleep
- When friends or family ask what they can do, delegate! For instance, let them drive to soccer practice or pick up the groceries
- Try simple exercises such as walking or yoga, which can help regain energy and clear the mind
As for follow-up care, most surgeons and oncologists will continue to follow a patient at six-month intervals for the first year or two, and then on a yearly basis. Depending on whether you are continuing to take Tamoxifen or other hormonal blockers, your oncologist will schedule visits at intervals of three or six months and yearly for the next five years if you remain symptom free. Your oncologist will continue to do blood work at these visits and unless you have had bilateral surgery, you should continue to have your regularly scheduled mammograms. You can find more information though the American Cancer Society’s publication, What Happens After Breast Cancer Treatment?
Q. My mother has stage 4 breast cancer and I'd like to know if she would be eligible for any clinical trials.
Whether or not a clinical trial would be an option for your mother will be determined by several factors. The guidelines that clinical trials follow state who will be able to join the study, based on the questions the research is trying to answer. Therefore, your mother’s type of cancer, as well as the stage of her disease, her age and whether she has received any prior treatment would be examples of some of the eligibility criteria that may come into play. I would encourage you and your mother to speak to her doctor about this important question, since only her doctor can determine whether a clinical trial would be appropriate.
To locate clinical trials that might be suitable for her, call the National Cancer Institute’s (NCI) Cancer Information Service at 1-800-422-6237, or you can search the NCI’s clinical trials database. If you need help using our clinical trials online search form, read Help Using the NCI Clinical Trials Search Form.
In addition, NCI’s Clinical Trials: Questions and Answers fact sheet includes information about types of clinical trials, who sponsors them, how they are conducted, how participants are protected, and who pays for the patient care costs associated with a clinical trial. It also includes some questions people might ask their health care provider before entering a clinical trial.
CancerCare’s clinical trials publications are also excellent resources.