Frequently Asked Questions

Most women find it difficult to take in all the information they get from their doctors – especially when first diagnosed with breast cancer. It’s OK to ask your doctor to repeat information, and it’s also important to develop effective strategies for asking questions and getting information from your doctors as you go through your breast cancer treatment. Some ideas to try:

• Write down your questions ahead of time and bring the list to each appointment.
• If there is not enough time to get all of your questions answered during an appointment, ask your doctor what the best way would be to get answers: by phone, e-mail, making another appointment, etc.
• Write down your doctor’s answers to your questions.
• Bring a friend or family member to appointments to help ask questions and remember or write down important information.
• Ask your doctor if you can bring a tape recorder to appointments, so you can go back and listen later.

Reviewed by Elyse Spatz Caplan, MA

There’s so much to ask about when you’re first diagnosed with breast cancer – it can feel overwhelming. Here are some questions to get you started:

• What type of cancer do I have?
• May I have a copy of my pathology report? Please explain what this report means.
• Is my cancer in my lymph nodes or other organs?
• What is the stage of my cancer? What does that mean in my case?
• What treatment choices do I have? What do you recommend? Why?
• Am I eligible for any clinical research studies?

Find a more complete list in LBBC’s Guide for the Newly Diagnosed and Guide to Understanding Treatment Decisions.

Reviewed by Elyse Spatz Caplan, MA

Your relationship with your doctor and the rest of your healthcare team is extremely important as you move through breast cancer diagnosis and treatment. If you generally like and trust your doctor, you can let him or her know that you’re feeling rushed and that you’d prefer a different style of communication. But if you feel like your doctor is not being responsive, you might want to consider looking for someone else. Ask another doctor you trust or a friend who has had breast cancer for names.

It’s also OK to get a second opinion, if you’re not sure about what course of treatment to choose. Again, if you have a good relationship with your doctor, he or she should not mind and may even be able to recommend a good place to go for a second opinion. If your doctor takes it personally or gets offended when you ask for a second opinion, he or she may not be the right doctor for you.

Read the article Getting Second Opinions: Benefits, Concerns and Making Decisions for Your Health and Life in Insight, LBBC's quarterly newsletter.

Reviewed by Elyse Spatz Caplan, MA

When you have tissue removed from a growth or tumor, a doctor looks at it under a microscope to see what the cells in the tumor look like. This is very important for determining the type and stage of the cancer and what the best treatments for it might be. The doctor who does this is called a pathologist, and the report on what the cancer looks like under the microscope is called a pathology report.

Reviewed by Elyse Spatz Caplan, MA

There is a lot of important medical information in pathology reports that is often difficult to understand. You can go through your pathology report with the help of one of the resources listed below to get an idea of what it says about your tumor. But even after you do that, the best way to get clear answers and a good understanding is to discuss it with your oncologist or breast surgeon.

This is especially important because you and your doctor will most likely use the information in the pathology report to decide what treatment course to follow. Don’t be afraid to ask questions and expect clear answers.

It can be helpful to take a friend or relative with you when you get the pathology report who can listen with you, take notes or even record the conversation (with your doctor's permission).

Here are some resources to help you understand your pathology report:

• Download a copy of Living Beyond Breast Cancer's Guide to Understanding Treatment Decisions. This guide includes a section on understanding your pathology report.
• Read the online version of breastcancer.org’s detailed booklet Your Guide to the Breast Cancer Pathology Report.
• Read the National Cancer Institute’s fact sheet on Patholgy Reports: Questions and Answers.

Reviewed by Elyse Spatz Caplan, MA

Sometimes you might get part of your pathology report while there are still more tests being done on the tissue sample that was removed from the tumor. So it could be that so far, you’ve seen only part of what will eventually be your complete report. It could also be that the lab where your biopsy tissue was examined did not perform all of the recommended tests or that the surgical procedure that was done could not evaluate all features of your cancer.

In either case, do not hesitate to ask your doctor about the information you think is missing from your report. And insist on getting that information to help you decide on a course of treatment. It’s also OK to ask for a second opinion from another pathology lab on your tissue sample. You need to do whatever it takes to be confident that you have all the information you need to make the best treatment decisions for you.

Reviewed by Rick Michaelson, MD

Your doctor will give you a series of screening tests to help determine the size of the cancer, as well as whether the cancer is only in your breast or whether it is present in the lymph nodes or in other organs in your body. These may include:

• Bloodwork helps plan for surgery, screen for evidence of cancer presence and plan for treatment after surgery. A complete blood count (CBC) determines whether your blood has a healthy number of blood cells. Abnormal test results could identify other health problems, such as anemia, that could impact the course of your treatment. Blood chemistries and liver enzyme tests are done if your cancer has started to grow beyond the ducts or lobules in your breast (invasive breast cancer). These tests can sometimes tell if the cancer is present in the bones or liver. If these test results are abnormal, your doctor will order imaging tests such as bone scans or CAT scans.
• Chest x-rays. If you have invasive breast cancer, a chest x-ray before surgery may show any evidence of breast cancer in your lungs.
• Bone scans involve injecting a small dose of a radioactive substance into your vein, which collects in areas of new bone formation and can be seen on the bone scan picture. A bone scan provides information about the presence of breast cancer in your bones. .
• CAT scans take 3 dimensional x-ray pictures of your body to provide detailed pictures of your internal organs. CAT scans of your abdomen or chest may be done to see if the cancer is present elsewhere in your body.
• MRI, or magnetic resonance imaging, is a procedure in which radio waves and a powerful magnet linked to a computer create detailed pictures of areas inside your body. These pictures can show the difference between normal and diseased tissue. MRI makes better images of some organs and soft tissue than other scanning techniques, such as CT or x-ray. MRI is especially useful for imaging the brain, spine, the soft tissue of joints and the inside of bones. Your doctor may order an MRI if you have had a biopsy result showing cancer in the armpit but you do not show signs of breast cancer when your breasts are examined by your doctor or by a mammogram. It may also be ordered if you have a biopsy result showing cancer in your breast and you have dense breasts (breasts with a lower amounts of fat compared with other tissues) that can not be fully evaluated with mammography.
• PET scans begin with an injection of sugar and a small amount of radioactive material. Because of the high amount of energy that breast cancer cells use, areas of cancer in the body absorb large amounts of the radioactive sugar. After the sugar has traveled throughout your body, a special camera on the PET machine detects the radioactivity to help identify the location of the cancer. PET scans are not routinely ordered but may be used if other test results do not clearly show whether the cancer is present in other areas of the body.

Reviewed by Rick Michaelson, MD

Waiting for test results can cause a lot of fear and anxiety. Try to avoid being tested before the weekend or a holiday, which can delay reporting of your test results. Talk to your doctor about your concerns, and ask how you can get your test results as quickly as possible. If you feel you have waited long enough, you should call your doctor or nurse and ask for information. If you want someone to talk to about your concerns, your doctor may also be able to put you in touch with a counselor or someone who has been through a similar experience.

Reviewed by Angela DeMichele, MD, MSCE

• Benign tumors do not contain cancer, meaning the cells that cause the tumors to grow do not invade surrounding tissue or spread throughout the body.
• Lobular carcinoma in situ (LCIS) is when abnormal cells are present in the milk-producing glands of the breasts (breast lobules). These cells have not developed the ability to spread outside of the lobules to other tissues in the breast or body. Although LCIS is technically not cancer and rarely becomes invasive cancer, a diagnosis of LCIS increases your overall risk of developing breast cancer in either breast later in life.
• Ductal carcinoma in situ (DCIS), also called intraductal carcinoma, is when abnormal cells develop within the milk ducts of the breast but have not developed the ability to grow out of the milk ducts into other tissues in the breast. Because these cells cannot spread at this stage, DCIS is considered non-invasive breast cancer. In some cases, DCIS may become invasive cancer if it is not removed, although doctors are still learning how to predict which DCIS will become invasive. Factors that seem to play a role in predicting future invasive breast cancers include the size of the area affected by DCIS, the degree of cancerous change in the abnormal cells and, in women having surgery that conserves the breast, the proximity of the margins to the surrounding tumor that has been removed. Because of this uncertainty, if you have DCIS, you may be given the option to undergo certain breast cancer treatments.
• Malignant tumors are capable of growing beyond their original site in your breast and into other tissues. This is called invasive or infiltrating cancer. Carcinoma is a term that describes most malignant tumors. It defines a group of cancers that develop from cells that line normal surfaces. Ductal carcinomas develop from cells that line the ducts that carry milk to the nipple. Lobular carcinomas, which are less common, develop from cells that line the glands that produce milk. Sarcomas, which are very rare in breast cancer, are malignant tumors that originate in bone, muscle, fat or connective tissue. Paget’s disease, which is a rare but slowly growing breast cancer, begins in the milk ducts of the nipple. The nipple can look red, itch, ooze and become crusty, and it can sometimes burn. Usually only one nipple is affected. Inflammatory breast cancer is a rare but very aggressive type of breast cancer where the cells block the lymph vessels in the skin of the breast. The breast often looks inflamed, swollen and red, like the peel of an orange, and can sometimes feel painful and warm. Lymphomas, which are very rare in breast cancer, are malignant tumors that originate in tissue that produces and stores white blood cells that fight infections and other diseases (lymphoid tissue).

Reviewed by Rick Michaelson, MD

After you undergo tests to diagnose the breast cancer, your doctor will run a series of pathology tests on the tissue removed from your breast and underarm during your biopsy. Using the information from all these tests, your doctors will assign a stage to your breast cancer using the TNM system.

• T stands for the size of the tumor and whether it has invaded the skin over the breast or the muscle beneath the breast
• N stands for the number of lymph nodes under the arm (axillary nodes) that involve the cancer or whether the tumor has spread to the nodes at the base of the neck (supraclavicular nodes)
• M stands for metastasis, or whether the cancer has traveled from your breast and lymph nodes to another area in your body

The stages of breast cancer are:

Stage O: The breast cancer remains inside the ducts or lobules of the breast and has not invaded the nearby fatty tissue of the breast. These cancers are called in situ, and are considered non-invasive.

Stage I: The breast cancer is a small tumor that is up to two centimeters across. It has grown out of the wall of the ducts or lobules into the surrounding fatty tissue of the breast (and is therefore considered invasive). The lymph nodes do not contain cancer.

Stage IIA: The breast cancer is invasive and has either:

• Formed a tumor that is between two centimeters and five centimeters across and is not present in the axillary lymph nodes under the arm.
• Formed a tumor that is less than two centimeters across and is present in 1-3 axillary lymph nodes under the arm.
• Not formed a visible tumor in the breast but is present in 1-3 axillary lymph nodes under the arm.

Stage IIB: The breast cancer is invasive and has either:

• Formed a tumor that is between two centimeters and five centimeters across and is present in 1-3 axillary lymph nodes under the arm.
• Formed a tumor that is larger than five centimeters across and is not present in the axillary lymph nodes under the arm.

Stage IIIA: The breast cancer is invasive and has either:

• Formed a tumor that is larger than five centimeters across and is present in 1-9 axillary lymph nodes under the arm.
• Formed a tumor that is less than five centimeters across and is present in 4-9 axillary lymph nodes under the arm.
• Not formed a visible tumor in the breast but is present in 4-9 axillary lymph nodes under the arm.

Stage IIIB: The breast cancer is present in the skin on top of the breast or the muscle underneath the breast. The cancer also may be present in lymph nodes in your armpit or within the breast. This cancer is often called locally advanced disease. Inflammatory breast cancer is considered a form of stage IIIB breast cancer.

Stage IIIC: The tumor is any size (or can’t be found) and is present in 10 or more nodes under the arm and/or in nodes at the base of the neck (supraclavicular nodes).

Stage IV: The cancer has traveled beyond the breast and surrounding lymph nodes to other organs in the body, such as the bones, lungs, liver or brain. This cancer is also referred to as advanced, or metastatic, disease. If you have this stage of breast cancer, visit an area of our Web site with information specific to your situation.

Reviewed by Rick Michaelson, MD

Doctors use staging to determine the extent of your breast cancer. This information helps them plan your treatment and predict your long-term outcome.

Reviewed by Rick Michaelson, MD

If you have estrogen receptor (ER) positive, HER2 negative, node negative breast cancer, your doctors may order a test called Oncotype DX that may help predect the likelihood that your breast cancer may return, or recur. Results can help your doctors determine whether you should proceed with hormonal therapy alone, or whether chemotherapy should be added to your treatment regimen. It may also help estimate the likelihood that chemotherapy will be of use.

Oncotype DX is a gene assay, a laboratory test performed on your tumor tissue to determine the unique gene expression profile of your tumor. Oncotype DX may help predict the risk of distant metastases within ten years of your diagnosis if tamoxifen alone is used. If that risk is unacceptably high, chemotherapy may be recommended.

Oncotype DX evaluates the activity of 21 genes from a sample of tumor tissue to determine a "Recurrence Score," a number between 0 and 100 that corresponds to your likelihood of breast cancer recurrence within 10 years of initial diagnosis. Scores of 17 and below indicate low risk for recurrence, scores between 18 and 30 indicate intermediate risk and scores of 31 and above indicate high risk. Each number represents a specific risk of recurrence—for example, a woman with a score of 20 has a different risk than a woman with a score of 25, even though both are in the intermediate-risk category. By determining your risk of recurrence, Oncotype DX can provide your doctors with information they need to design the most effective treatment plan to control your disease.

Until recently, the test was only approved for use with ER+, lymph node-negative early-stage breast cancer. However, results of a recent study presented at the Annual Meeting of the American Society of Clinical Oncology (ASCO) in June indicate that Oncotype DX may help determine your risk of recurrence if your cancer is node-positive, particularly if you are postmenopausal. The results also indicate that Oncotype DX may help determine if you would do well with a combination of chemotherapy and hormonal treatment versus an alternative chemotherapy regimen or other strategies, available to try in a clinical trial. To learn more, talk with your healthcare team about open clinical trials that might be right for you.

Reviewed by Rick Michaelson, MD

Breast cancer treatment involves local therapy and systemic therapy.

The goal of local therapy is to eliminate the cancer in your breast and lymph nodes under your arm, called the axillary lymph nodes. Local therapies are sometimes offered in combination with each other, and other times surgery is used alone. Each case is unique, and so is each treatment plan. Local therapies include:

• Surgery. The goal of surgery is to remove the cancer from your breast. There are two types of breast surgery, breast conservation and mastectomy. In breast conservation, the surgeon performs a lumpectomy (also called a partial mastectomy or segmental excision), which is followed by radiation treatment to the remaining breast tissue. A mastectomy, or removal of the entire breast, is done for a variety of reasons, including personal preference, multiple tumors in different parts of the breast, tumors in the nipple area, previous breast cancer in the same breast or large tumors.
• Radiation. The goal of radiation therapy is to treat any microscopic cancer cells that may be present in your breast or chest wall area after removal of the primary tumor. Radiation works by focusing the power of high-energy x-rays on the breast, chest wall or lymph nodes. It is very effective against cancer in the specific area it is directed to, but it will not treat breast cancer that has traveled to other parts of the body.

The goal of systemic therapy is to get rid of cancer cells from an invasive cancer that may have traveled away from the primary tumor and can form cancer in distant sites, such as the bones, liver, or lung. Systemic therapies include:

• Chemotherapy. The goal of chemotherapy is to kill any microscopic cancer cells that may have spread from your breast before the tumor was discovered and removed. Chemotherapy works by killing rapidly dividing cells, including those found in some breast cancers. Chemotherapy medications may affect some normal cells as well as cancer cells and may cause side effects. There are many different types of chemotherapy medications. They may be administered alone (single-agent therapy), or together (combination therapy). Your doctor will help you determine the best chemotherapy treatment for your cancer based on the traits of your cancer and your treatment goals.
• Targeted (Biologic) Therapy. Targeted therapies are adjuvant treatments that focus on a specific biological trait of cancer cells which differ from normal cells. In this way, the cancer cells are targeted by the treatment while normal cells are spared. For example, trastuzumab (brand name: Herceptin) targets breast cancer cells that have high levels of a protein called HER2. Other targeted therapies block the growth of blood vessels that some tumors need to grow. Many forms of targeted therapy are being tested in clinical trials. If you are interested in targeted treatments, ask your doctor whether you are eligible to receive trastuzumab or participate in a clinical trial.
• Hormonal Therapy. Hormonal therapies are targeted treatments that seek to lessen the effects of estrogen. Your doctor may recommend a hormonal therapy if you have estrogen receptor-positive or progesterone receptor-positive breast cancer. Hormonal therapy works to prevent the growth of hormone-sensitive breast cancer cells and may protect you from your breast cancer coming back. Tamoxifen, for example, works by keeping the estrogen in your body from "communicating" with estrogen receptors on your tumor. Your cells will no longer "see" the estrogen and will stop growing. Researchers have also developed other hormonal therapies that work like tamoxifen but have fewer serious side effects. Aromatase inhibitors work in women who are post-menopausal or whose ovaries no longer produce hormones by blocking the activity of an enzyme called aromatase, which converts substances produced by the adrenal glands into estrogen.

For more information on types of treatments, download a copy of Living Beyond Breast Cancer's Guide for the Newly Diagnosed. This guide includes a section on treatment basics that explains what local and systemic treatments may be offered.

Reviewed by Rick Michaelson, MD

You and your doctor will make this decision together based on the biology of your breast cancer, your overall health and lifestyle factors. It is important for you to understand why your doctor recommends a particular treatment and to understand why one treatment might benefit you more than another.

For example, not everyone can have breast conservation surgery (lumpectomy followed by radiation). Generally, your tumor needs to be less than five centimeters in diameter and involve only one area of your breast. In addition, you must have enough volume in your breast for the surgery to have good cosmetic results. If you have locally advanced cancer (large tumors in the breast), you may be a candidate for breast conservation therapy after receiving chemotherapy or radiation treatment, or both.

In some cases, your surgeon may recommend mastectomy, or removal of the entire breast, for a variety of reasons, including personal preference, multiple tumors in different parts of the breast, tumors in the nipple area, previous breast cancer in the same breast or large tumors. If you have a mastectomy, you may or may not have radiation treatment depending on the recommendations of your doctor.

Your doctors may recommend systemic treatments such as chemotherapy, targeted (biologic) therapy and hormonal therapy based on the results of your pathology report. They will consider factors such as the size of the tumor, how many lymph nodes were affected by the cancer, whether the tumor is estrogen sensitive, whether it overproduces the HER2 protein, the grade of the tumor (how similar it looks to a normal breast cell) and whether there are tumor cells in the lymphatic channels or blood vessels within your breast. They will also consider whether the cancer has invaded nearby tissues, is present in lymph nodes, grows in response to hormones and has an increased number of HER2 receptors. The recommendations may also take into account your age, your overall health, your preferences and the likelihood that your breast cancer could recur (come back).

You may be given a single treatment option, or you may have a choice among several options. Sometimes your doctor may recommend a clinical trial. Ask why each treatment is recommended and why one treatment might be more appropriate than another. Find out whether your doctor has information about the effectiveness of each treatment, and how the side effects of each treatment could impact your quality of life.

Reviewed by Rick Michaelson, MD

A lumpectomy, also called partial or segmental mastectomy or breast conservation surgery, involves removing only the cancer from the breast with a rim of healthy tissue surrounding it (called a margin). In most cases, lumpectomy is followed by radiation therapy to the remaining breast tissue. If you have a small breast cancer, or a cancer that is small when compared to the overall size of your breast, breast-conserving therapy (lumpectomy and radiation therapy) is as effective as mastectomy in its ability to treat cancer while preserving the breast.

Mastectomy is removal of your entire breast, which includes the nipple, the areola and all the underlying breast tissue. It can be performed with or without an immediate reconstruction. Most of the time, if you choose mastectomy, radiation is not required. However, if the tumor is large, or there is tumor in more than four lymph nodes, post-mastectomy radiation is recommended.

Breast conservation treatment and mastectomy are equal to one another in their ability to treat cancer.

Reviewed by Jennifer Chalfin Simmons, MD, FACS

Breast conservation is recommended only for those who have small tumors that occupy one quadrant (quarter) or area of the breast. In addition, you must be willing and able to have radiation afterward in order to have breast conservation. Tumors that are large, occupy more than one quadrant of the breast or that involve the skin, the nipple or the chest wall are not amenable to breast conservation. They require mastectomy for treatment.

If your doctor offers you a choice between lumpectomy and mastectomy, consider how you feel about removing your breast and whether you can devote the additional time and travel for radiation therapy. Be sure to get all the facts. Though you may think of mastectomy as a way to "take it all out as quickly as possible," doing so may not provide a better treatment outcome. Your doctor should be able to explain the advantages and disadvantages of each treatment and help you to decide which is best for you.

Reviewed by Jennifer Chalfin Simmons, MD, FACS

Breast reconstruction can take place at the same time as the mastectomy surgery (immediate reconstruction) or months or even years later (delayed reconstruction). Surgeons may use silicone or saline-filled implants, or tissue from other parts of your body, or a combination of both, to recreate a breast.

If you are thinking about breast reconstruction, discuss your options with your doctor as you are planning your treatment. If you decide to have immediate reconstruction, you and your doctor should discuss your personal preferences and lifestyle, the size and shape of your breasts, the size and shape of your body, your level of physical exercise, details about your medical situation and whether reconstructive surgery could impact further treatment. You should state your expectations up front so that your final result is what you want it to be.

Here are some other resources to learn more about breast reconstruction:

• Talk with other women who have gone through reconstruction. To find someone to talk to, call our Survivors’ Helpline at (888) 753-LBBC (5222). We can match you with a woman who is in a situation similar to yours.
• Read the articles Breast Reconstruction: Options, Expectations and Alternatives and Breast Reconstruction: Questions to Ask Surgeons You Interview in Insight, LBBC's quarterly newsletter.
• Listen to the podcast Breast Reconstruction: Understanding Your Options with Liza C. Wu, MD.

Reviewed by Jennifer Chalfin Simmons, MD, FACS

There are many different types of chemotherapy medicines, and they may be administered alone (single-agent therapy) or together (combination therapy). Some chemotherapy medications do a better job of fighting the cancer when they are given together. Your doctor will determine the best chemotherapy treatment for your cancer based on the traits of your cancer and your treatment goals. Chemotherapy is delivered directly into your bloodstream, usually intravenously but sometimes orally as pills or capsules. Your doctor will determine how often and how much chemotherapy you receive. Chemotherapy may be given weekly, every two weeks, every three weeks or monthly. Some treatments, mostly pills taken by mouth, are taken daily.

There are two categories of hormonal therapies. Selective estrogen receptor modulators, or SERMS, are used for DCIS and in premenopausal women. Aromatase inhibitors are used in postmenopausal women. Both tamoxifen, the most commonly used SERM, and aromatase inhibitors are taken orally, enter your bloodstream and travel throughout your body. In general, both tamoxifen and aromatase inhibitors are given for five years as a daily pill. Studies have indicated that taking tamoxifen for longer than five years does not increase its effectiveness. Clinical trials are helping researchers figure out when and how long you should take aromatase inhibitors.

Reviewed by Lillie Shockney, RN, BS, MAS

Radiation has several side effects. The most common include:

• Skin reactions on or near the radiated area. You may notice itchiness, dryness, soreness, redness and blistering. Wearing loose-fitting cotton shirts and bras, avoiding harsh soaps, using moisturizer specially formulated for women undergoing radiation therapy, dusting the breast area with cornstarch to absorb moisture and reduce friction, and keeping the treated area away from sun and chlorine can help minimize these side effects. Salves and medications may also be prescribed to ease discomfort. Ask your radiation nurse and radiation oncologist for suggestions on ways to keep your skin moist and comfortable.
• Fatigue. Because the effects of radiation treatment build up over time, your fatigue may increase later in your treatments. Expect to feel tired in the last few weeks of treatment, and plan time for naps and resting. Minimizing stress, maintaining a balanced diet and establishing an exercise routine can help boost your energy. And remember to ask for and accept help when you need it.
• Pain because of swelling and irritation of the nerves in the tissues. Anti-inflammatory medications such as acetaminophen [brand name: Tylenol] and ibuprofen [brand name: Advil] can help ease any pain you may experience during treatment. Ask your doctor or pharmacist before starting any medicine.

Other less common side effects may include lymphedema, rib fractures and some rare cancers. Talk with your doctor about the risks, benefits and side effects of radiation in order to make the best decision for you. You may also want to think about joining a support group to talk to others who are going through the same treatment. To find someone to talk to, call the LBBC Survivors’ Helpline at (888) 753-LBBC (5222). We can match you with a woman who is in a situation similar to yours.

Reviewed by Lillie Shockney, RN, BS, MAS

Chemotherapy affects different people in different ways. Some people experience many side effects, while others have very few of them. Your chances for having side effects can depend on how healthy you are prior to treatment, the type of cancer, the stage of the cancer, and the kind and dose of chemotherapy you receive.

Common side effects of chemotherapy include:

• Nausea and vomiting. Drinking lots of fluids, eating bland foods and avoiding large meals, acupuncture, taking anti-nausea medications, and reducing anxiety through meditation can help minimize mild nausea. If you use an anti-nausea medicine, make sure to take it as prescribed; these medicines work better when taken before nausea develops. If you have severe nausea, your doctor can prescribe stronger anti-nausea medications such as steroids or administer intravenous fluids. Talk to your doctor if you experience nausea more than three days after chemotherapy and you are already taking anti-nausea medications.
• Hair loss from chemotherapy, although temporary, is one of the most visible and most emotionally disturbing side effects of cancer treatment. Your hair may fall out completely, thin or not fall out at all, depending on which chemotherapy medication you are taking. Your reaction to hair loss from cancer treatment may vary and depend on several things, including your individual feelings about and cultural importance of hair, how much hair loss is expected and whether you have enough information to prepare for the loss. Even with enough information, you may still feel truly devastated when your hair begins to fall out. Preparing ahead of time for your hair loss can help you feel more in control. Using mild shampoos and soft brushes and wearing a wig or scarf can help minimize the impact of hair loss.
• Fatigue is often a result of anemia, or a lower number of red blood cells than normal. There are several treatments for anemia, including red blood cell growth factors, some vitamins and minerals and blood transfusions. Remember to get plenty of rest, get moderate exercise, eat a well-balanced diet and accept help from others for daily chores and activities.
• Infection. Because chemotherapy affects all dividing cells, it sometimes damages fast-growing, non-cancerous cells in your body, like white blood cells that protect the body from infection. Your doctor may prescribe medications such as filgrastim (brand name: Neupogen) if your white blood cell counts drop. Washing your hands with anti-bacterial soap, staying away from people who are sick and avoiding cuts can also minimize your risk of infection.
• Menopausal symptoms and the resulting loss of estrogen can lead to bone loss and cause hot flashes, night sweats, vaginal dryness and loss of interest in sex. Chemotherapy may cause temporary or permanent infertility depending on type and dosage of mediation and your age at the onset of treatment. Talk to your doctor about medications you can take to protect your bones. If you are of childbearing age and you are interested in continuing your family after chemotherapy is over, discuss your options and concerns with your doctor. For more information, you may also visit our Web site community for young women affected by breast cancer.
• Memory loss, or "chemo brain," has been reported by many women during and immediately after chemotherapy treatment. Getting plenty of sleep, maintaining a routine and reducing stress and anxiety can help you maintain your ability to think clearly and concentrate. Because the connection between chemotherapy and mild memory loss is still unclear, researchers hope to find out how different types of chemotherapy and the dosage and length of treatment affect memory and concentration.

Other possible side effects from chemotherapy include neuropathy (discomfort in the hands and feet), mouth and throat sores, taste and smell changes, diarrhea, and weight gain or loss. Talk with your doctor about the risks, benefits and side effects of chemotherapy in order to make the best decision for you. You may also want to think about joining a support group to talk to others who are going through the same treatment. To find someone to talk to, call the LBBC Survivors’ Helpline at (888) 753-LBBC (5222). We can match you with a woman who is in a situation similar to yours.

Reviewed by Lillie Shockney, RN, BS, MAS

Both tamoxifen and the aromatase inhibitors are hormonal therapies, a type of targeted treatment that seeks to prevent your breast cancer from coming back by lessening the effects of estrogen. Hormonal therapies lessen the effects of estrogen by blocking the growth of hormone-sensitive breast cancer cells.

All hormonal therapies, but especially tamoxifen, carry an increased risk of blood clots and stroke. You should discuss any history of heart problems with your doctor, and call your doctor if you notice swelling, redness, discomfort or warmth in your legs. Sometimes you may need to take a blood-thinning medication such as aspirin along with hormonal therapy. Tamoxifen also carries a small but increased risk for uterine (endometrial) cancer. You should report any unexpected vaginal bleeding to your doctor immediately.

Aromatase inhibitors put you at higher risk for bone thinning, osteoporosis and bone fractures. A major study recently found that zoledronic acid (brand name: Zometa), a bone-strengthening medication, may prevent bone difficulties. Zoledronic acid is a bisphosphonate, a type of medicine that strengthens and builds bone. There are several bisphosphonates available that help slow or lessen bone thinning.

Aromatase inhibitors may also cause joint pain, which can be relieved by over-the-counter pain medicines. Low vitamin D3 levels can cause joint pain to be worse. If you continue to experience joint pain, you should get your vitamin D3 level checked by your doctor.

Other side effects include muscle aches and stiffness, mild nausea and a possible increase in cholesterol levels. Talk to your doctor if you have a family history of heart disease. You may need to watch your cholesterol level carefully and make sure it remains low with lifestyle choices such as a low-fat diet, exercise and losing or maintaining weight.

The most common side effects of both medicines are:

• Hot flashes. Although hot flashes are among the most common complaints about hormonal therapies, recent studies have suggested that women who have them experience more benefit from tamoxifen than those who do not. If you take tamoxifen, hot flashes may indicate that the medicine is being converted into a more powerful version in your body. Medications such as venlafaxine (brand name: Effexor) and paroxetine (brand name: Paxil) can reduce hot flash triggers inside the brain; talk with your doctor about these options if hot flashes become uncomfortable for you. Stopping your treatment for a week or two, then restarting with a lower dose of tamoxifen or aromatase inhibitors (if you are postmenopausal) and slowly increasing the dosage over time may also help your body adjust. Talk to your doctor about these options if hot flashes are a problem for you.
• Fatigue. Because hormonal treatments lessen the effects of estrogen, you may feel a loss of energy. Making time for yourself to do something you enjoy can boost your energy level. Remember to get plenty of rest, get moderate exercise, eat a well-balanced diet and accept help from others for daily chores and activities.
• Difficulty sleeping and night sweats are often caused by the onset of menopause. If your difficulty sleeping is due to menopausal effects such as night sweats, treatment with medications called hypnotics or antihistamines may help you. A variety of other sleeping aids may also be used, including complementary therapies like acupuncture and yoga.

Talk with your doctor about the risks, benefits and side effects of each family of medications in order to make the best decision for you. You may also want to think about joining a support group to talk to others who are going through the same treatment. To find someone to talk to, call the LBBC Survivors’ Helpline at (888) 753-LBBC (5222). We can match you with a woman who is in a situation similar to yours.

Reviewed by Lillie Shockney, RN, BS, MAS

Once you have been diagnosed with breast cancer, you have a higher risk for developing a new breast cancer than someone who has never had the disease before. It is very important to get the follow-up treatment and care your doctor recommends so your doctor can keep track of your side effects and how you are recovering. The American Society of Clinical Oncology has established the following guidelines:

• Have a physical examination performed by a doctor every four to six months for five years.
• Perform a breast self-exam every month.
• Have a mammogram every 12 months. If you have been treated with breast conserving surgery and radiation therapy, have a mammogram six months after radiation therapy ends, then of both breasts every 12 months.
• Understand which symptoms should be reported immediately , including new lumps, bone pain, chest pain, abdominal pain, dyspnea (difficult, painful breathing or shortness of breath) or persistent headaches. The American Cancer Society and People Living With Cancer are good resources for more information about symptoms of recurrence.
• Have a pelvic exam every 12 months if you are taking tamoxifen and have not had your uterus removed.

Reviewed by Rick Michaelson, MD

Clinical trials, also called research studies, look at whether a new medicine, treatment or approach is safe and effective in people. They compare the effectiveness of a standard treatment to a new treatment to see which works better or causes fewer side effects.

As a recently diagnosed woman, your doctor may talk with you about treatment clinical trials. Treatment trials are available for all types of breast cancer and may study chemotherapy treatment, hormonal therapy, vaccine therapy, surgical procedures or radiation treatments.

New treatments are tested in clinical trials only after several years of research in the laboratory and with animals. Those data are reviewed and the federal Food and Drug Administration (FDA) must agree that the treatment is safe before human testing can begin.

Trials are conducted in four phases, or steps—each is a separate trial. Data from each phase must be approved by the FDA before the next phase can begin.

• phase I: First human test step. Measures safety; best dosage and delivery method (by mouth, injected); side effects. Enrolls small number of participants.
• phase II: Determines effectiveness; watches for side effects. Has 300 or fewer participants.
• phase III: Compares new treatment to current standard; measures side effects. When phase III is completed, new treatment may receive FDA approval. More than 1,000 participants needed.
• phase IV: After FDA approval. Monitors effects of long-term use and compares new medicines to others. Many times, there is no phase IV trial.

Reviewed by Rebecca S.Trupp, RN, OCN, CBPN-IC

When you take part in a breast cancer trial, your safety is vitally important. The researchers are ethically bound to protect you. What’s more, federal laws specify that the study be closely monitored and that data on side effects and outcomes be reported to safety regulators, government agencies and the sponsor. Those safeguards mean that independent groups are watching and evaluating what is going on.

Today, every clinical trial is regulated by the FDA and an Institutional Review Board, a diverse group of people that reviews and approves trials with your safety in mind. You will also take part in an approval process called informed consent, in which your doctor or nurse will explain the trial to you in detail and give you a paper document with details about the treatment, tests, side effects, possible risks, benefits and costs.

During the trial, a Data Safety and Monitoring Board, an independent group of experts not involved with the trial, reviews the information produced so far on the treatment, side effects and structure of the trial. Should they find anything wrong with the trial, they will stop it. You may also stop participating in the trial at any time.

Taking part in a clinical trial is a serious decision, but doing so may help other women in the long run. All the progress we have made in cancer research comes from people like you who tried the latest, most novel treatments, tests or procedures with the hope of improving outcomes for themselves and generations to follow.

Reviewed by Rebecca S.Trupp, RN, OCN, CBPN-IC

No—clinical trials are not just for people who are gravely ill. People with early-stage breast cancer can participate; even people who have never had breast cancer can take part in specially designed clinical trials. Clinical trials simply offer you the option of a treatment that may work as well as the standard treatment but cause fewer side effects, or perhaps be more effective and safe.

When clinical trials compare breast cancer treatments, they compare the standard treatment against the new treatment. Placebos (inactive substances) are rarely used alone in clinical trials for breast cancer treatment unless no other effective treatment exists, so you can feel confident that you will get treatment that meets the current standard of care if there is one available. You will always be told if the study uses a placebo instead of or in addition to active treatment.

Reviewed by Rebecca S.Trupp, RN, OCN, CBPN-IC

Some clinical trials are randomized, meaning you and other trial participants will be assigned to one of the specified treatments by random computer selection. Many trials also are double-blinded, which means neither you nor your doctor know which treatment you are receiving. Randomized, double-blinded trials ensure the results of the study are accurate and have not been influenced by beliefs you or your doctors may have about the outcome of the treatment.

Sometimes trials are unblinded, which means you and your doctor know which treatment you are receiving. If your trial involves medicine, this might also be called an open-label trial.

Reviewed by Rebecca S.Trupp, RN, OCN, CBPN-IC

You can learn more about clinical trials from your doctor and nurses, from nonprofit organizations like Living Beyond Breast Cancer and from the Internet. Here are some resources to learn more about clinical trials:

• Visit the National Cancer Institute’s section on finding clinical trials. You can search by state and type of trial.
• Go to LBBC’s Clinical Trials Resource Center, presented in partnership with CenterWatch.com.
• Visit the Coalition of Cancer Cooperative Group’s website cancertrialshelp.org.
• Go to clinicaltrials.gov, from the National Institutes of Health for information on understanding clinical trials and finding studies in your community.
• BreastCancerTrials.org
• Emerging Med: (877) 601-8601, emergingmed.com

Reviewed by Rebecca S.Trupp, RN, OCN, CBPN-IC

Always! Once you get your doctor’s opinion about your diagnosis and treatment plan, you may want to get another doctor’s advice before you start treatment. Breast cancer is rarely an emergency, so you have time to get a second opinion.

Reviewed by Carolyn Weaver, RN, MSN, AOCN

A second opinion can help you confirm your diagnosis and get another doctor’s view on treatment options. It can give assurance that you have looked at all options and lets you ask questions after you have had the chance to think about what your doctor told you. A second opinion can give you peace of mind that you made the best choice for your health.

Reviewed by Carolyn Weaver, RN, MSN, AOCN

Most doctors welcome second opinions, and your doctor should be able to suggest another doctor. However, if you feel uncomfortable asking for a second opinion, it may be helpful to tell your doctor that while you are satisfied with his or her care, you want to be as informed as possible before making any final choices about treatment. You may want to bring a family member for support during this discussion. If your first doctor is unable to recommend a doctor for a second opinion, you may want to try calling your local hospital’s patient referral service.

The doctor’s office where you are getting the second opinion will tell you what needs to be sent to them for your consult. Often they will need mammograms, biopsy slides, and copies and records of other tests or procedures done. You will need to tell your first doctor or healthcare facility what you need sent and where to send it.

Reviewed by Carolyn Weaver, RN, MSN, AOCN

Some insurance plans make you get a second opinion, especially if you are going to have surgery. Other plans will pay for a second opinion if your doctor requests one. Before getting a second opinion, you should check with your insurance company to find out if they will cover the cost. If your plan does not cover it, consider if you can pay for it yourself.

If you have Medicaid, coverage of a second opinion will depend on your state’s program. Contact your state’s department of medical assistance or department of health to find out about coverage. Visit http://www.cms.hhs.gov/apps/contacts for contact information.

Medicare will pay for a second, third or fourth medical or surgical opinion, as long as the opinion is medically necessary and is for the treatment of a condition covered by Medicare. Depending on the format of your Medicare plan, you may need a referral from your primary care doctor. To find out if you need a referral or to obtain information about Medicare’s coverage of second opinions, call (800) MEDICARE.

Reviewed by Carolyn Weaver, RN, MSN, AOCN

If your doctors do not agree on the same treatment, you may want to get a third opinion from another doctor.

It is not uncommon for doctors to disagree on courses of treatment, and choosing between different recommendations can be tough. Consulting a third doctor may ease concerns about treatment choices. This doctor may help you weigh the benefits and risks of each treatment and help you choose. Comparing first, second and third opinions on your own or with your family or friends also may help you feel certain about your decision.

You also may want to speak with another woman who has gone through what you are experiencing. Our Survivors’ Helpline at (888) 753-5222 is staffed by trained volunteers who have had breast cancer. We can match you with a woman who had a similar diagnosis or experience. She will listen and help you think through your questions and concerns.

Reviewed by Carolyn Weaver, RN, MSN, AOCN

• Do something special for yourself: spend the day with a friend, take a weekend trip, or go to a spa.
• Eat your favorite foods. Chemotherapy sometimes makes things taste different than usual, so you may want to avoid your favorite meals during treatment.
• See a dentist to make sure your teeth and gums are in good condition. Buy toothpaste for sensitive teeth. Chemotherapy can cause mouth pain, dry mouth or sores that make you vulnerable to infection.
• If you may lose your hair, make a plan. Some women cut it short or shave their heads before the hair falls out on its own; others preserve each hair as long as possible. Have hair replacements such as wigs, hats and scarves on hand.
• Arrange rides to treatment with family or friends.
• Drink lots of water to help prevent dry mouth, mouth sores and nausea.
• Get loose, comfortable clothing that makes you feel at ease and provides your nurses easy access to your arm.
• Ask your nurse what foods to have on hand to help you avoid feeling sick to your stomach. Stock up your freezer with foods for you and your family.
• Learn the names of the administrative staff in your doctors’ offices so you feel comfortable asking questions and requesting reports.
• Talk to those who care about you or, if you aren’t feeling up to it, ask someone to communicate on your behalf. Try Lotsa Helping Hands or CarePages

Reviewed by Carolyn Weaver, RN, MSN, AOCN

While some chemotherapy treatments will make you lose your hair, this is not the case with all of them. Some will cause thinning, while others won’t impact your hair in any way. Preparing ahead of time for your hair loss can help you feel more in control when hair thinning begins. Cut your hair short, or shave it before it falls out. Some women even have a "hair shaving" party so they do not have to go through the experience alone. Investigate hair replacements before you lose your hair, so you have materials on hand. If you do lose your hair, you may choose to wear a wig, shave or cut your hair, wear a scarf or hat or wear nothing at all.

Reviewed by Carolyn Weaver, RN, MSN, AOCN

Whether you work or volunteer will depend on how you feel--don’t overdo it! You may want to speak with your employer about working less often or at home when you don’t feel well enough to make it into the office. There are laws that require employers to adjust your work schedule to help you while you are getting treatment. Check with your employer or your social worker.

Reviewed by Carolyn Weaver, RN, MSN, AOCN

Aerobic exercise, such as walking or dancing, can help relieve stress and help combat fatigue. It can also help you better maintain your endurance and stamina during treatment.

Reviewed by Rick Michaelson, MD

• Be as open as you can about what you are thinking and feeling. Some people may be afraid to ask.
• Tell people when you need them to listen. Say, "I need you to sit down, look at me and listen to me for a few minutes so I know you’re hearing what I’m saying."
• Be specific about what you need and don’t need. If people try to do something for you that you would rather do yourself, let them know.
• If someone starts to tell you stories or give you advice you don’t want to hear, ask the person to stop. Don’t be afraid to be blunt. Say, "Please stop. This is not helpful to me." If you want to talk about something other than cancer, let them know.
• Ask other women who had breast cancer about resources that they found helpful.
• Call LBBC’s Survivors’ Helpline at (888) 753-5222 and talk to a woman who has had breast cancer about how she asked family and friends for help and support.
• Visit Lotsa Helping Hands or CarePages or ideas and support.

Reviewed by Carolyn Weaver, RN, MSN, AOCN

Most of us are used to serving as primary caregivers, whether that means earning money to support our families, managing a busy household, or providing emotional support. After a diagnosis with breast cancer, it can be very challenging to give yourself permission to ask for help—it might make you feel a little uncomfortable. But remember that no one expects you to be Superwoman while you are undergoing treatment! Accepting support will give you the energy you need to focus on your health and well-being. It will also give the people "work" to do so you can focus more on your own needs.

Help means different things to different people, so think about what it means to you. Maybe you want help with practical tasks like running errands, cooking meals and paying bills. Perhaps you want someone to take you to doctor appointments or communicate with family and friends about your treatments. Or maybe you want someone to spend an hour with you talking about something other than cancer. Many people will want to help you, and giving them something to do will make them feel useful. Be specific about what you want—and what you don’t want—so you will get what you need.

Because communicating with large numbers of people during treatment can be mentally and physically exhausting, seeking help from a trusted "point person" who can communicate for you may help ease the burden. You can also visit LBBC’s Lotsa Helping Hands page to create your own website and ask for help with errands or provide your friends and family with updates about your treatment.

Reviewed by Cindy Miller, MSW

Your healthcare provider, oncology nurse or hospital social worker can help you find breast cancer support groups and other resources in your community. Your faith community may have a support group. You may also contact any major hospital or cancer center, or your local chapter of the American Cancer Society.

Living Beyond Breast Cancer offers conferences, teleconferences, networking meetings, information on clinical trials and online support such as message boards to help keep you informed and in touch with others who can relate to what you are going through. To find someone to talk to, call the LBBC Survivors’ Helpline at (888) 753-LBBC (5222). We can match you with a woman who is in a situation similar to yours. You may also visit our message boards to connect with other women affected by breast cancer. For other resources that may be helpful, visit our links page to connect with other breast cancer organizations.

Reviewed by Cindy Miller, MSW

Your healthcare provider, oncology nurse or hospital social worker can help direct you to the resources you need, whether you are looking for a support group, counseling, financial assistance, transportation to and from treatment, rehabilitation or other services or just want to connect with someone who has experienced breast cancer. Most treatment centers also have a social work, home care or discharge planning department that may be able to help you. You may be able to talk to a financial counselor in your treatment center’s business office about developing a monthly payment plan if you need help with treatment expenses.

Reviewed by Cindy Miller, MSW

Many psychiatrists, psychologists, counselors and social workers have special experience working with people newly diagnosed with cancer. Ask your healthcare team for a referral. Different types of counseling include individual, group, family, self-help or peer, bereavement, patient-to-patient and sexuality. Here are some tips to help you cope:

• Talk about your stress, worries or concerns with your family, friends and healthcare providers. Find and talk to other women who have had breast cancer through LBBC’s Survivors’ Helpline at (888) 753-LBBC (5222)
• Surround yourself with positive people.
• Maintain a healthy lifestyle. Sleep well, eat well and exercise.
• Try yoga, meditation or deep breathing exercises to help alleviate stress.
• Keep up with your normal activities as much as possible
• Get professional help if you want it. See a family therapist, social worker or counselor, or a psychotherapist.

Reviewed by Cindy Miller, MSW