Breast Cancer In Young Women

FAQs

Early Detection and Diagnosis
How can I detect my breast cancer early?
The best tool for young women to find breast cancer early is to become familiar with their breasts: their shape, size and what they feel like. Learn what is normal for you. Sometimes your breasts may change throughout your monthly cycle. If you are pregnant or nursing, your breasts will change even more dramatically. If you find anything unusual, see your doctor immediately and insist on a diagnosis. In general, women should have a yearly clinical breast examination by a doctor beginning at age 20 and start having annual mammograms beginning at age 40.
Can breast cancer be prevented?
Since we do not know what causes breast cancer, we do not know how to prevent it. Knowing the facts and taking action now could save your life. Until researchers understand the causes of breast cancer, you need to be your own health advocate by becoming familiar with your breasts and recognizing any changes that occur.
What are the symptoms of breast cancer?

Some of the symptoms include:

  • A lump or abnormality in the shape or feel of the breast
  • A lump in the underarm area
  • A generalized swelling of all or a part of the breast
  • An irritation or dimpling of the skin on the breast
  • Nipple retraction (nipple turning inward)
  • Rash, redness or scaliness on the nipple or breast skin
  • Spontaneous discharge from the nipple

Please consult your doctor if you are unsure about a symptom.

Is family history of breast cancer important?
Yes. While only 5 to 10% of all women diagnosed with breast cancer have a family history, it is important to know your family's history of cancer, if any, both on your mother's side and your father's side. Women with at least one close family relative (mother, sister or daughter) should start a screening program with a breast specialist when they are ten years younger than their relative's age at diagnosis, but usually not before 20 years old.
Can I get breast cancer if it doesn't run in my family?
Breast cancer can happen to anyone. Having a family history increases your risk, but 80% of all women diagnosed with breast cancer have no family history of the disease.
What is the incidence of breast cancer in young women?

Despite the prevailing opinion that young women don't get breast cancer, the reality is that they can and do. In fact, one in every 229 women between the ages of 30 and 40 will be diagnosed with breast cancer in the next 10 years. Following are some other startling facts about breast cancer in young women:

  • Breast cancer is the leading cause of cancer death in women ages 15 to 44.
  • Approximately 11,100 women age 40 and under will be diagnosed with breast cancer this year.
  • There are more than 250,000 women diagnosed with breast cancer at age 40 or under currently living in the United States.
What do I do if I find a lump?
If you feel a lump or abnormality, see a doctor without delay. Most breast lumps are benign (not cancerous), but any lump should be checked out. Do not delay seeing your doctor because you are scared that you may have breast cancer. 80% of all breast lumps that are biopsied are benign (not cancerous), and early diagnosis of breast cancer is the key to survival.
What do I do if my doctor wants to 'watch' my lump for six months?
If your doctor tells you to wait or that you are "too young to have breast cancer," and does nothing more than a manual breast exam, insist on a mammogram or other diagnostic test – or get a second opinion from another doctor. If you have a mammogram but your lump or abnormality does not show up, insist on further tests. These may include a sonogram, magnetic resonance imaging (MRI), needle aspiration or surgical biopsy. This is important because young women tend to have denser breasts; therefore, mammograms are not as accurate for younger women as they are for older women.
At what age should I start and how often should I do a breast self exam?

YSC does not endorse the practice of a formal BSE, which you can read more about in our YSC BCYW_Research&Trials_Position_Papers Position Paper on Breast Self Examination (BSE) and Early Detection. Instead, until there are reliable early detection and high-risk screening methods, YSC recommends young women be familiar with their breasts and be able to detect any change from the norm. We recognize that performing self exams might be the best way for some women to become familiar with their breasts, and therefore we do not discourage women from doing so. However, it is important that young women know the facts about breast cancer and the limitations of current early detection methods.

At what age should I start getting a clinical breast exam?
Clinical exam is a physical examination of your breasts by a trained physician, nurse practitioner, nurse or physician's assistant and should begin at age 20 (or when you begin to see a gynecologist, whichever comes first). Clinical Breast Examination (or CBE) includes inspection (looking) and palpation (feeling) of the entire breast/chest area including the lymph node areas above and below the collarbone and under each arm. The CBE also presents an opportunity to discuss any concerns and questions you have and learn how to correctly identify the difference between lumps or changes that are of concern and those that are normal.
What is a mammogram?
A mammogram is an x-ray of the breast during which the breast is pressed between two plates to spread the tissue and produce a clear picture. The pressure can cause some discomfort, but it lasts only a few seconds. While radiation is used, the levels are extremely low and will not significantly increase the risk for acquiring breast cancer. The whole procedure takes about 20 minutes. According to the American Cancer Society, 1 in 10 women who get a mammogram will need more pictures taken, but most of these women do not have breast cancer, therefore try not to be alarmed or stressed while waiting for results; only 1 or 2 mammograms of every 1,000 leads to a diagnosis of cancer.
At what age should I start getting mammograms?
Beginning at 40 years of age, all women should receive yearly mammograms. If you have a family history of the disease, consult your doctor as to the age you should have a baseline mammogram.
Should young women get mammograms?
Because young women typically have dense breast tissue, a mammogram is not always the best diagnostic tool for them. For this reason, and because dense breasts also make it more difficult to feel a lump, it is crucial that women aged 20 and older become familiar with their breasts and learn how to spot any unusual changes.
What is a sonogram?
A sonogram (or ultrasound) is a test that uses high-frequency sound waves to distinguish between fluid-filled cysts (which absorb sound) and solid masses, (which reflect sound). A sonogram does not involve electromagnetic radiation (as opposed to e.g. x-rays). A sonogram is the same method employed for other tests such as imaging of a child in the womb during pregnancy.
What is a biopsy?

There are essentially four types of biopsies:

  • Fine Needle Aspiration - Conducted right in your doctor's office, a long thin needle is inserted into the mass, to draw out representative cells. If the lump cannot be felt (e.g., only showed up on a mammogram), then a sonogram can be used simultaneously to ensure the needle is inserted into the suspicious group of cells. One risk of inaccuracy here is that the report can come back benign if the mass contained both cancerous and non-cancerous cells, but the needle only withdrew the non-cancerous cells.
  • Core Biopsy - Conducted in the radiologist's office, a core biopsy uses a slightly larger needle (about the size of the lead in a pencil) to take a plug of tissue for a broader sampling of cells. Like the fine needle aspiration, a core biopsy may be done in conjunction with a sonogram.
  • ABBI Biopsy - The Advanced Breast Biopsy Imaging system is similar to the machine used for core biopsies, but removes a greater amount of tissue, including healthy tissue. Conducted under local anesthesia, the ABBI also leaves a scar from an incision on the breast.
Excisional Biopsy - In some cases serving as a lumpectomy, the surgical biopsy is the surgical removal of the entire mass and surrounding tissue, conducted under local anesthesia.
Benign Breast Conditions
What are fibrocystic breasts?
The word fibrocyst literally means “fiber bag”. In the case of a fibrocyst this term refers to a cyst (i.e. a a closed epithelium-lined formation in the body) made of fibers (generally dense tissue). "Fibrocystic breasts" is a term used to label a number of benign (non-cancerous) breast irregularities. The term typically refers to breasts that are lumpy, usually at the time of the menstrual cycle when one or more of these benign lumps, or the general feeling of lumpiness, may increase due to extra fluid collecting in the breast tissue. While in the past it was referred to by physicians as "fibrocystic breast disease", critics have said that this was a terminology used by doctors as an umbrella under which to categorize numerous, and vastly different, breast irregularities. Benign breast irregularities will occur in over half of all women at some point in their lifetime, accounting for nearly 90% of breast masses in women. 80% of lumps which are biopsied are found to be benign. It is increasingly important for women to become familiar with their breasts so they can sense irregularity and advocate for testing.
What causes breast pain?

Breast pain is most commonly associated with the menstrual cycle and therefore is referred to as cyclical pain. It is thought to be related to hormone activity in combination with a reaction from the breast tissue. Studies show that most women are more concerned about the possibility of cancer than the pain itself. There are treatments available to help with this pain. Some physicians may recommend limiting consumption of caffeine or reducing salt intake. If necessary, doctors can offer medicinal interventions.

Non-cyclical breast pain is much less common and can be caused by a trauma such as an injury or a breast biopsy. In both cases, if you are experiencing breast pain it is important to take the time to find a breast specialist to examine your breasts and determine what steps should be taken, if any.

What are some benign (non-cancerous) breast conditions?

Cysts – These are fluid or tissue filled sacs occurring most commonly in women approaching menopause. These are often observed by doctors over time or drained using fine needle aspiration. There are several types of cysts as described below:

  • Fibroadenomas – These are smooth, round and hard lumps that can usually move easily around the breast. This lump can be anywhere from 5mm to 5cm and may become larger during pregnancy or nursing. Fibroadenomas will usually disappear or get smaller over time and therefore are normally left alone, especially in younger women in which they are most common. However, the procedure for removal is simple and some women may choose to have the lumps removed.
  • Fat Necrosis – This is an often painless swelling of fatty breast tissue, often occurring after surgery or injury to the breast. This tumor can look like cancer and is therefore sometimes removed by surgical biopsy.
  • Sclerosing Adenosis – Is an enlargement of breast lobules which is sometimes painful and can contain calcifications.
Intraductal Papilloma – This is a wart-like growth located inside the nipple which can cause discharge. It is usually treated by surgery.
Do any breast conditions increase the risk of breast cancer?
Most breast conditions do not put a woman at increased risk for breast cancer. The conditions listed above are examples of this. Two conditions that may increase the risk of breast cancer are Atypical Ductal Hyperplasia (ADH) and Lobular Carcinoma in Situ (LCIS). A finding of either of these conditions should result in more frequent screenings and/or other interventions to reduce the risk of breast cancer.
Questions to ask your doctor about breast irregularities:
  • What type of lump do I have?
  • Will I need to have a fine needle aspiration?
  • Will I need to have a biopsy?
  • What are the risks and benefits of removing the lump?
  • What are the risks and benefits of "watching and waiting"?
  • Does my condition increase my risk for breast cancer?
  • What are my treatment options?
  • Would changing my diet help my condition?
Newly Diagnosed
I’ve just been diagnosed with breast cancer. What do I do now?

Stop, react, adjust, and make a game plan. Allow yourself moments alone to give yourself time to process your thoughts and be in touch with your feelings – get away to places that make you feel calm, relaxed and good about yourself. Don't necessarily do anything yet. Moments alone will allow you to get your head clear enough to understand what it is you want to do next, determine with whom you need to share your news, in what order, how and when. Begin to make lists of all the questions you want to ask your doctor and all the people who can possibly help you or might know something about your diagnosis.

Who should I tell about my diagnosis?
Take some time to determine who needs to know right away -- traditional family members such as your spouse or significant other, children, siblings and parents, as well as good friends and understanding co-workers that you trust. Many women find that their traditional support network shifts when they are diagnosed. Those who have been great supporters in the past sometimes are not the most helpful now, while others who you might not have expected step up to help you face the new challenges in your life. Family alone may not be as much support as you need. You may wish to seek out women who have been through the same experience you are going through and/or find other support networks of young women living with breast cancer.
When should I tell people about my diagnosis?
You should tell people when you feel comfortable and when you think they can help you. The last thing you need is to have to take care of someone else who is falling apart because you have been diagnosed with cancer. You might also consider waiting to tell some people until after you have figured out your game plan. That way, you do not need to call everyone you know every night to report on the doctors you saw that day and their opinions. In addition, some people will take the news better if you tell them what your game plan is at the same time that you tell them you have cancer because they will see that you are in control of the situation.
Did I cause this?
No matter what your lifestyle, nutritional habits, exercise regime, family history or anything else that you have read about that might contribute to cancer, nothing you did caused this. You did not ask for it. No one knows what exactly causes breast cancer or any other type of cancer, for that matter.
Should I seek professional counseling?
If you find yourself unable to cope with your emotions for more than a few weeks or if it becomes difficult to function in your daily tasks, it is time to seek professional counseling. Prolonged feelings of being overwhelmed, helpless, out of control, angry, depressed or paralyzed about making a decision deserve the attention of a trained professional. Find someone who specializes in the issues associated with cancer, or better yet, breast cancer. By participating in individual counseling, you may be more comfortable expressing sensitive or private feelings you have about your illness and its impact on relationships.
Should I join a support group?

It is normal to have trouble dealing with your diagnosis and treatment. Many women find talking face-to-face with a group of other women who are living with breast cancer helps. Support groups are not for everyone, so you need to try different things to determine what is helpful to you. Some young women find that going to a support group where everyone is significantly older is isolating. Some areas have support groups specifically for young women, but many do not. Fortunately, there are other options to reach other young women living with breast cancer besides local support groups. You may meet them online on a bulletin board, such as the ones in the YSC Community. Discussion rooms allow you to find other young women to e-mail or speak with on the phone. Ask your hospital social worker if he or she knows of groups in your area or other young women who wish to talk with others. Visit <link to Get_Involved_Affiliates>YSC’s Affiliate</link> page to find out if there is a YSC support group near you.

Who are all these specialists?

The following is a list of the many doctors you may encounter during your breast cancer experience:

  • Surgeon (breast or general): Depending on the size of the community in which you live and the availability of breast surgery specialists, you might choose a breast surgeon or a general surgeon who has performed a number of breast surgeries. He or she will be your lead doctor through what is frequently the initial phase of cancer treatment. However, in some cases, if he or she determines from the biopsy or mammogram that the tumor is large, your surgeon might ask you to consult an oncologist to determine if chemotherapy is warranted to shrink the tumor prior to surgically removing it (called neoadjuvant chemotherapy).
  • Plastic Surgeon: If you choose to undergo reconstructive surgery, you should choose a plastic surgeon who will work with your breast surgeon. Not only will they be sharing the operating room if your reconstruction process is begun during the mastectomy surgery, but they will need to agree on which type of reconstructive surgery is most appropriate for your body type and desired outcomes.
  • Pathologist: Although it's not up to you which pathologist your surgeon chooses to work with, the pathologist is still a critical member of your team. He or she will perform several tests on pieces of the tumor removed to determine the aggressiveness of the cancer and the extent to which it has or has not spread through your body. This pathology report will be the basis for what your oncologist recommends.
  • Medical Oncologist: A medical oncologist is an expert in the use of a variety of modalities used to treat cancer, including chemical and hormonal therapies. This is the doctor who will determine and oversee your chemotherapy regimen, if it's required. While your surgeon will have oncologists to whom they can refer you, you are completely free to choose your oncologist. When the surgery phase is complete, your surgeon will essentially hand you over to your oncologist, who will become your lead doctor.
  • Oncology Nurses: The nurses who administer your chemotherapy treatments will be some of the most valuable sources of information in terms of practical tips to help you cope with your cancer treatment. If there is a nurse that you particularly like and find helpful, don’t hesitate to request him or her for subsequent treatments.
  • Radiation Oncologist: A radiation oncologist is the doctor who plans a program of radiation therapy (i.e., local treatment of breast cancer with high dose x-rays), using physics to determine how to effectively radiate the entire breast for maximum impact on any remaining cancer cells, while minimizing damage to the healthy tissue. Although your medical oncologist can refer you to a radiation oncologist, there will be others to choose from, especially if you are at a large medical center. Ask around. The nurses, receptionists - even other patients in the waiting room - all may be able to give you information about the reputations and personal styles of the radiation oncologists.
  • Radiation Therapist: Radiation therapists are the technologists who run the machines that administer your daily radiation treatment. There might be a few different people operating the machine you are assigned to, and although you do not choose them, like nurses, they will quickly become your friends because you will be seeing them daily for several weeks.
  • Psychologist or Psychiatrist: Depending on your emotional state at various stages of your recovery, you might want to take advantage of the mental health resources the hospital can provide. Do not be afraid or ashamed to ask your surgeon or oncologist for recommendations if you feel yourself falling apart, feeling depressed, overwhelmed by fear or anxiety, or having difficulty coping. Remember, your doctors should be looking at you as an entire individual to be treated. Therapists affiliated with the hospital should be particularly adept at handling cancer and survivorship issues. If you need help, get it.
  • Social Worker: Believe it or not, there are a wide variety of social and economic aspects to breast cancer that you may have never imagined. Since you may be overwhelmed right now simply adjusting to your diagnosis and physical changes, you might rely on a social worker to identify extra sources of support for you. They can help you find support groups, secure community assistance and even help in managing the insurance and financial aspects.
  • Nutritionist: Good nutrition is important during treatment and throughout survivorship. Eating well can help you feel better and stay stronger and is good for your overall health. Ask your doctors if there is a nutritionist on staff who can review your diet: 1) while you are undergoing treatment, as there are certain foods that might help you tolerate chemotherapy and its side effects better than others; and 2) following treatment, when you will want a healthy diet forever.
  • Geneticist: If you come from a family with a high incidence of breast cancer, you might want to consider genetic testing to help make your treatment decisions. If you are a carrier of the BRCA1 or BRCA2 gene mutationand are at high risk for recurrence, development of cancer in the other breast or ovarian cancer, you may want to consider more aggressive surgeries. Some women elect to have a mastectomy, or even a bilateral mastectomy, (removal of both breasts), as a preventative measure. However, think very carefully about genetic testing, as there are a host of ethical, legal and insurance implications should such information become part of your publicly available medical history. Ask yourself if there is anything you would do differently than what you are doing today if you discovered you carried the gene mutation. If there isn't, don?t bother to see the geneticist.  YSC encourages young women to speak with a genetic counselor about the host of medical and psychological implications of genetic testing.
  • Gynecologist: Your gynecologist should be informed and have copies of all your medical reports. If your hormones have been affected temporarily by chemotherapy (e.g., you experience menopausal symptoms such as hot flashes or irregular or absent menstrual periods), your gynecologist will be helpful to speak with about managing your reproductive cycle. Also, once you've had breast cancer, he or she might want to monitor you more carefully for other types of reproductive cancers.
How do I find the best doctors for me?

Choose an NCI designated Comprehensive Cancer Center or a large teaching/university hospital. Ask everyone you know – doctors, family, friends, co-workers – even if you think they've never known anyone with breast cancer. Talk to other survivors and call breast cancer organizations to get referrals. You will hear certain names over and over. Those are the doctors you want to consult. Remember that treatment for breast cancer is a process and you will have many decisions to make along the way, so you need to find a doctor whose judgment you trust. Positive attributes to look for in a doctor can be:

  • compassion and empathy
  • honesty and straightforwardness - someone who is informative but not patronizing
  • consideration of your needs as a whole human being, not just the cancer tumor
  • knowledge of the latest advances in breast cancer treatments
  • openness to second opinions on care and your feelings about treatment options
  • accessibility (someone who could be paged or called 24 hours a day)
What is the importance of my pathology report?
Your pathology report is the key tool in helping you and your doctors determine the correct treatment for you. There are different types of breast cancer. The pathology report will help determine the stage, size, grade, type and receptor status of your breast carcinoma. These factors will determine what treatment is appropriate for you.
What should I ask my doctor about my pathology report?
  • What type of breast cancer do I have?
  • What stage is my breast cancer?
  • Should I get a second opinion from another pathologist? Why or why not?
  • What was the grade of the tumor (rate of cell growth)?
  • What lab tests were done on my tumor?
  • What were the results?
  • Are these the most accurate tests available?
  • What other tests are available?
  • Was my tumor estrogen-receptor positive? What does that mean?
  • Was my tumor progesterone-receptor positive? What does that mean?
  • Was my tumor HER2/neu positive? What does that mean?
  • Are there other tests that I should have (e.g., bone scan, CT scan)?
  • Can you recommend good sources of information (books, websites) for me to read to better understand my breast cancer?
Do I have to start treatment right away or do I have time to make a decision?
It is usually safe to wait a few weeks to begin your treatments, but check with your doctor. While you gather information, get second or even third opinions. Make decisions and prepare for the time you will need to focus on recovery.
Should I have a second opinion?
If you don't get the information you want or satisfactory responses from your doctors, get a second opinion - even a third. Many individuals choose to get a second opinion regardless of how they feel about the first doctor's suggestions. Others choose a second opinion when they feel the first doctor did not provide a satisfactory treatment plan or if they do not feel the doctor is a good fit. Good doctors are open to second opinions, regardless of your reasons. During a second and third opinion, make sure you bring your slides and pathology report (they should be on file in the center where you had the procedure); have your x-rays, imaging studies and radiology reports reviewed by a radiologist; and make sure you receive a proposal for a treatment plan. You can compare and contrast the treatment plans that have been proposed to you and see which one you feel most comfortable with.
What if the second opinion is different?
It is very possible that two good doctors will give you the same diagnosis (stage, grade, ER/PR status, etc.) but recommend different treatments, because there may be several ways to treat any individual cancer. Choose the treatment that is right for you. You might also consider getting a third or fourth opinion.
Surgery
What are my surgical options?

You and your surgeon will decide upon a lumpectomy (also referred to as breast conservation) or a mastectomy, based upon many factors such as:

  • Type of breast cancer. For the two most prevalent types -- infiltrating ductal or infiltrating (or "invasive") lobular carcinoma -- a lumpectomy may suffice, since these types are usually contained within one portion of the breast in a clearly delineated tumor. However, if the cancer is spread throughout the breast tissue, a mastectomy may be necessary.
  • Absolute size of tumor. The larger the tumor, the more likely a mastectomy will be required and will likely offer a better cosmetic result.
  • Location of tumor(s). If the tumor is located in a place that would diminish a lumpectomy's cosmetic results (e.g., around or beneath the nipple), a mastectomy might be the preferred alternative.
  • Size of tumor relative to breast size. If you are small-breasted with a fairly large tumor, a mastectomy with reconstruction will likely provide the better cosmetic result. If you are large-breasted, removal of the tumor by lumpectomy might not even be noticeable.
  • Other health issues. Since a lumpectomy is almost always followed by radiation treatments, you may not be a candidate for lumpectomy if you are unable to have radiation for a variety of other, unrelated health reasons. For example, if you have certain collagen vascular diseases or skin disorders, you may or may not be a candidate for either radiation or reconstructive surgery, due to potential complications.

Taking into account all these factors, your surgeon will propose the best course of treatment for you. Sometimes he or she might offer you a choice, and sometimes the recommendation might be strongly directed to one or the other alternative. You must make the final decision yourself. Some women opt for a mastectomy even though their doctors say that lumpectomy will suffice, because it provides them with more emotional comfort.

What is a lumpectomy?
Also known as breast conservation surgery, a lumpectomy is the removal of the carcinogenic tumors with surrounding tissue to get clear margins. That is, an area of the healthy tissue all around the lump removed to be sure there are no lingering cancer cells at the surgery site. It does not involve the removal of the entire breast and often leaves a woman with a breast that looks similar to the way it looked before the surgery. If you have a lumpectomy, you will almost always require subsequent radiation treatment. Women who are pregnant or have multiple tumors are usually not candidates for lumpectomies.
What is a mastectomy?

There are several different types of mastectomies.

  • Total or Simple Mastectomy - The removal of the entire breast (including the nipple), but no lymph nodes under the arm.
  • Modified Radical Mastectomy - The removal of the entire breast (including the nipple), the lining over the chest muscles, and many of the lymph nodes under the arm.
  • Radical Mastectomy - The removal of the entire breast (including the nipple), the lining over the chest muscles, the chest muscles, and all the lymph nodes under the arms.
  • Skin-sparing mastectomy - This type of surgery involves the removal of the same amount of breast tissue but a much smaller incision allowing for minimal scarring and salvaging a large portion of the skin. With this type of procedure reconstruction is done in the same surgery. As this is a new treatment and the long term effects are yet to be seen it is important to discuss with your doctor the risks and benefits.
  • Subcutaneous Mastectomy - Surgery which leaves the nipple and overlaying skin intact making reconstruction easier but also increasing the risk that cancer cells will remain. Usually only used for prophylactic mastectomies.

 

To see pre- and post-reconstruction images please visit: Susan Love MD or order: Show Me Photo Collection of Breast Cancer Survivors': Lumpectomies, Mastectomies, Breast Reconstructions and Thoughts on Body Image, Third Edition.

How do I decide between a lumpectomy and mastectomy?
This is a very personal choice. Studies have shown that women who make their own decisions and do not rely solely on their doctors’ suggestions are happier with the results of their surgery regardless of which they choose. Talk to your doctors, use your instinct and consider many different factors, including: cancer type, body image, feminine identity, piece of mind, breast conservation, reconstruction, radiation (often, radiation is not given after a mastectomy).
Why are some of my lymph nodes removed during surgery?

Technically referred to as an axillary node dissection or sentinel node dissection, the removal of one, some, or all of the lymph nodes under your arm on the side of the affected breast provides significant information to the oncologist in determining what type of treatment may be required beyond surgery. Breast cancer cells can travel and spread through the lymph nodes or the bloodstream. Since the lymph nodes from the chest area are connected through the underarm area before dispersing out to the body, the surgeon can remove a sampling from that area to determine if any cancer cells have spread beyond the chest. If no cancer cells are identified in the lymph nodes, the doctors may conclude that the cancer was locally contained, meaning it had not spread beyond the breast. Alternatively, if there are cancer cells in the nodes, doctors may want to treat the cancer more aggressively to kill those cells that have traveled beyond the chest and prevent the further spread of carcinogenic cells to other organs and promote cancer growth in other areas of the body.

What is a sentinel lymph node biopsy and is it right for me?

In some cases, a radioactive dye will be injected into the tumor site during surgery. After a few minutes, the surgeon can track how the dye reaches through the lymph nodes. The first, or sentinel, node that the dye reaches is then the only one removed. The theory is that if cancer cells are migrating to the body from the breast, they would also travel to this node first. While the patient is still under anesthesia, a pathologist analyzes the sentinel node. If it is free of cancer, the surgeon might remove one or two more nodes surrounding that sentinel node just to be sure, but can conclude with 95% accuracy that the others are negative. The woman then keeps most of her lymph nodes intact and is spared the lymphedema and cellulitis risks of axillary node dissection.

If, however, the sentinel node contains cancer cells, the surgeon will continue with an axillary node dissection to determine the extent of the cancer spread.

What is cellulitis?
Cellulitis is an infection of the lymph nodes, which can be caused by lymphedema. The affected area of the skin can be red and warm to the touch. It can cause fever and chills.
Can I prevent lymphedema?

While there are no known ways to prevent lymphedema, the best defense against complications is to be extra careful about preventing injury, trauma, infection or cuts on the hand and skin of the arm. Here's how:

  • Keep your arm and hand clean and moisturized.
  • Avoid cuts or punctures of the skin; for example, avoid cutting cuticles, drawing blood or receiving intravenous medications in the affected arm.
  • Avoid excessive pressure on the arm, such as tight fitting clothes or jewelry, blood pressure monitors, heavy handbags or shoulder straps.
  • Wear gloves or protective handgear for any activity where the affected hand might be exposed or vulnerable (e.g., gardening, dishwashing, cooking, housecleaning, sewing, sports).
  • Avoid sunburn and tan gradually. Wear sunscreen with at least SPF-15.
  • Avoid burns of any kind.
  • Avoid insect bites. Carry insect repellent with you throughout the summer.
  • Avoid extreme heat, cold or sudden temperature changes.
  • Avoid salty foods. Salt retains fluid.
  • Avoid lifting more than 10 pounds, either by carrying heavy items or lifting weights at the gym.
  • Avoid activities with constant repetition. Give your arm an occasional rest if you can't avoid repetition.
What is lymphedema and will I get it?

Lymphedema, a chronic swelling of the hand and/or arm, is caused by blockage in the lymph system to the arm. Lymphedema is unlikely following sentinel node dissection but more common after axillary node dissection. The blockage is usually due to scar tissue from surgery or the less effective drainage in the absence of the lymph nodes you had removed. It can also be caused by radiation to the area where your lymph nodes were removed. In addition to swelling, lymph system damage can result in limited mobility and vulnerability to infection or cellulitis. Pay attention to early warning signs. Call your doctor at the first signs of pain, discomfort or swelling. Don't leave these symptoms untreated - especially if you suspect an infection, which could quickly become serious.

What can I expect upon waking from surgery?

If you are undergoing a lumpectomy, you'll be sent home from the hospital within 24 hours. Once you are taken into surgery, the actual procedure takes 2-3 hours, including the lymph node dissection. After a few hours in the recovery room, upon your awakening and stabilization of vital signs, you'll be moved to your room. The next day you will be walking around and will most likely be sent home.

The surgery associated with a mastectomy requires a longer hospital stay, generally 3-4 days. The surgery itself may last up to 6-7 hours if your plastic surgeon teams with your general surgeon to begin the reconstruction process.

What do I need to know about the drains left in place after a mastectomy?
The drain is a soft plastic tube that is meant to draw off fluid from the area of surgery. You will need to empty it about twice a day and measure the amount of fluid. The amount of fluid will decrease over time as you heal. At that point your surgeon will remove it during a visit to his or her office.
What questions should I ask my surgeon before my surgery?
  • What kind of surgery do you recommend for me and why?
  • How much of my breast will be removed?
  • Will I be able to have breast reconstruction?
  • What are the advantages and disadvantages of having reconstruction at the time of my initial surgery?
  • Will lymph nodes need to be removed?
  • Am I a candidate for a sentinel lymph node biopsy?
  • How many times have you performed this procedure?
  • Am I a candidate for chemotherapy before my surgery (called 'neo-adjuvant chemotherapy')?
  • What do I need to do to prepare for my surgery?
  • Should I meet with a plastic surgeon before the surgery to discuss reconstruction?
  • Will I have a local or general anesthetic?
  • Where will the scars be and what will they look like?
  • What side effects should I report to you?
  • Will I need to stay overnight in the hospital?
  • What kind of follow-up care will I need?
  • How long will I need to plan to miss work or limit other daily activities?
What questions should I ask my surgeon after my surgery?
  • Can I have a copy of my pathology report and an explanation of what all the items on my report mean?
  • Did you get clear margins during the surgery?
  • How many lymph nodes were removed?
  • How many (if any) contain cancer cells?
  • Were there any cancer cells found anywhere outside my tumor?
  • What are our next steps?
Radiation Therapy
What is radiation therapy?
Radiation therapy is a localized treatment employed typically following a lumpectomy and, in some cases, a mastectomy. High-intensity x-rays are directed in many small dosages to the entire breast area, as a means to destroy any carcinogenic cells that could remain in the breast following surgery. X-rays penetrate through the breast cells and cause damage to the cellular DNA thus inhibiting the ability of any remaining breast cancer cells to further replicate.
When and how often after surgery will I receive radiation treatments?
About four weeks after surgery and chemotherapy, you will begin radiation treatments on a 5-day per week schedule, and generally for 6-7 weeks (this will vary with each patient). Shorter and more frequent treatments cause less damage to healthy tissue, allowing it to repair fully and ensure maximum efficacy in destroying any remaining carcinogenic cells.
What are the side effects of radiation?
  • Local skin reactions – These can include itching, redness or dryness and scaling of the skin. The degree of skin reaction is varies widely among individuals. Skin irritation can continue for up to two weeks following the end of treatment.  Ask your doctor how you should treat any skin reactions.
  • Fatigue – The onset of fatigue is correlated with your exposure to radiation. That is, the more radiation therapy you need the more fatigue you may experience. These feelings of fatigue should disappear following treatment.
Will radiation change the way my breast looks and feels?
Most of the effects of radiation on the skin are temporary, and your breast will gradually heal once treatment is finalized. However, there may be a permanent change in the color of the skin making it appear sunburned. For most women, however, the breast will look and feel about the same after radiation. Some women experience a firmer treated breast.
What questions should I ask my doctor about radiation?
  • Why do I need radiation?
  • What type of radiation will be employed?
  • How long will each treatment take?
  • When should I start treatment?
  • Who will be giving me my treatments?
  • Do I need to bring someone with me to my treatments?
  • What are the possible side effects?
  • How long will they last?
  • Are there any treatments for these side effects?
  • What are the risks?
  • Is there anything that I can do now or during treatment to minimize the side effects and risks?
  • Can I continue normal activities during treatment?
  • Will the cost be covered by my insurance?
  • What kind of follow-up and monitoring will I need after my radiation treatments are done?
Chemotherapy
What is chemotherapy?

Chemotherapy is the therapeutic use of a variety of chemicals - given intravenously or orally - to systemically destroy any carcinogenic cells that might be lingering anywhere in your body. The administered chemical agents travel through the bloodstream and reach most cells in the body. The chemical agents can target carcinogenic cells and interfere with their replication and growth thus preventing the spread of cancer. The administered chemical dose has been exacted from years of research studies to determine the maximum tolerable amount of chemicals (which do not cause permanent damage to healthy tissues) resulting in the greatest probability of killing any remaining cancer cells. Administering a series of treatments of the same or different drugs over time ensures that chemotherapy will remove all carcinogenic cells as they undergo different phases of their growth cycle.

Chemotherapy may be given in the following settings:

  • Adjuvant - This is the most common form of treatment, delivered after surgery to treat microscopic carcinogenic cells which are not visibly detected, but which may cause the cancer to recur or spread.
  • Neo-adjuvant - This is treatment administered before surgery, to reduce the size of the tumor in the hopes of requiring a less invasive surgery and increasing the chances for "clear margins" or total removal of cancerous tissue.
  • Metastatic - This treatment is administered to decrease the size of tumors and slow the spread of the disease. In the hopes of stabilizing the progression, this treatment is used to reduce the symptoms of the disease, as well as to improve the quality of life for the patient.
How often will I receive chemotherapy?

Depending on what combination of drugs your oncologist recommends, the kind of cancer you have and how you respond your treatment sessions will be given on and off daily, weekly or even monthly. The time periods between these treatments allow your body to recover from any damage to healthy cells, such as white blood cells in the bone marrow. The drugs will be administered to you either by intravenous drip, which can take anywhere from thirty minutes to a few hours, or orally in pill form. Chemotherapy can be administered on an outpatient basis at a hospital, in a special treatment clinic or even in your doctor's offices.

What is dose-dense chemotherapy?
Dose-dense chemotherapy is a relatively new treatment which is administered more often than traditional chemotherapy regimens, in conjunction with another drug designed to strengthen the immune system and lessen the time needed for recovery between treatments. The treatment is currently going through clinical trials to determine long term benefits. It is important that you discuss every treatment option with your doctor in order to find one which is right for you.
Will I feel sick after a chemotherapy treatment?

Everyone experiences chemotherapy differently. Some people find they have days when they feel fine, and days that they're not so fine, days when they are more energetic or much weaker than usual, days with a hearty appetite and days they don't even want to smell food. There are days when white blood cell counts are low, which makes one more susceptible to infections. There are treatments available to help prevent and/or reduce the nausea and vomiting brought on by chemotherapy as well as treatments to strengthen the immune system. You should speak with your doctor about the best ways to manage the side effects of your treatment.

Will I lose my hair?
Most people undergoing chemotherapy will experience a complete loss of hair or a thinning of the hair. This will depend upon the type of chemotherapy you have been given. Speak with your doctor about which drugs will cause this side effect and whether it can be avoided. Hair loss can range from the scalp, eyelashes, eyebrows, pubic area, to the entire body. This can be a very challenging side effect of treatments, especially to young women. Many women decide to wear wigs while others choose to leave their heads bare and/or wear a scarf around their heads in public. It is often recommended that if you do plan to wear a wig you choose one before you have lost your hair so you can find one that matches your natural color. The important thing to remember is that whatever you choose to do has to be what feels right for you and not something you do to please anyone else.
How long will it take for my hair to grow back?
Your hair should begin to grow back between 6-8 weeks after you have finished treatment, but remember that everyone's experience is slightly different.
Will chemotherapy affect my fertility?
The threat of fertility loss is a daunting side effect of chemotherapy, especially for young women diagnosed with breast cancer. The nature of the treatment, which is designed to attack and kill cells, can inadvertently affect a woman's eggs and throw the patient into early menopause. Since younger women have more eggs, they are less likely to be thrown into premature menopause. However, fertility will be affected differently by different chemotherapy regimens, so it is important that you discuss with your doctor the importance of fertility when choosing a treatment. Many doctors are used to treating older women for whom fertility is not a major concern. There is a lack of research available as to the links between chemotherapy and young women's fertility so you should try a keep up to date for any new developments in the field. For more information on fertility you can visit Fertile Hope or browse through current research on our website's Published Research section. Other Sources: ASCO Guidlines for Fertility Preservation.
Should I worry about getting pregnant during treatment?
While chemotherapy drugs can induce menopause in premenopausal women, it cannot be seen as a treatment that prevents pregnancy. It is possible to get pregnant during chemotherapy treatments; however this can lead to serious birth defects. It is important for premenopausal women to use alternative forms of contraception while receiving treatments. While it is unsafe to get pregnant during treatments, having undergone chemotherapy treatment does not make it unsafe to get pregnant. Six months is often the minimum amount of time recommended to ensure pregnancies are not affected by prior chemotherapy agents. Most oncologists recommend waiting at least two years after chemotherapy to think about getting pregnant, but this varies between individuals. Getting pregnant after treatment should be discussed with your oncologist both before and after treatments.
Why do I experience side effects?
Chemotherapy targets and destroys fast-growing cells. Since cancer cells are not the only fast growing cells in your body, chemotherapy also destroys some non-carcinogenic fast growing cells, including hair follicles, gastrointestinal lining, blood forming cells, skin cells and ovaries. This destruction or toxicity accounts for the most common side effects of chemotherapy, including hair loss, nausea, symptoms of menopause, pigment changes and changes in the red and white blood counts.
What are some of the side effects of chemotherapy?

The most common side effects of the most common chemotherapy drugs are as follows:

  • Adriamycin (doxorubicin): More common side effects are hair loss, nausea and diarrhea. Bone marrow suppression is also a risk. Less common but more worrisome is a problem with the regulation of a specific heart valve. While the risk is dosage dependent, for the standard treatment regimen today, it is actually less than 1%. Anyone receiving this drug will go for cardiac testing (MUGA scan) and be monitored appropriately for the duration. The drug may also cause the urine to be a reddish color.
  • Cytoxan (cyclophosphamide): More common effects include metallic mouth taste while drug is being administered, and later nausea, appetite changes (anorexia), hair loss, low blood counts, abdominal pain, skin rashes and diarrhea. Irregularities in your menstrual cycle can also occur, and as total dosages increase, fertility declines, and the likelihood of premature menopause increases. Rarely, there can be toxicity to the bladder (to prevent this, drink plenty of fluids) and metabolic abnormalities.
  • Methotrexate: More common affects include nausea, mouth sores, low blood counts, hair loss, headaches and drowsiness. In some cases it can cause itching, skin rashes and dizziness. In rare cases, it can cause severe toxicity of the liver and bone marrow which requires regular monitoring with blood testing.
  • 5-Fluorouracil: Fairly well tolerated. More common effects are nausea, appetite changes, diarrhea and low blood counts. Rarely, skin darkening or pigment changes can occur.
  • Taxol (paclitaxel): The primary concern is about an allergic reaction, so everyone receiving this drug gets pretreatment with antihistamines and anti-inflammatory drugs. Make sure that someone is in the room with you for at least the first hour of your first Taxol treatment in case you do have an allergic reaction. Common side effects are hair loss, nausea, low blood counts, joint pain and less frequently, neurological side effects such as weakness, numbness and tingling (which may be temporary during treatment or more permanent, depending on dosage and duration).
  • Taxotere (docetaxel): There is also a concern for severe allergic reaction. Swelling in the legs and fluid build-up, sometimes in the lungs, can be a problem. More common effects are excessive tearing, fatigue, loss of appetite and severe nausea.

Other more general side effects of chemotherapy may include temporary memory loss (often called "chemo brain"), fatigue and depression, all induced by a complex interaction of chemical, physical and emotional factors.

What questions should I ask my doctor about chemotherapy?
  • Why do I need chemotherapy?
  • What type of chemotherapy do you recommend? Why?
  • What are the benefits and risks of this type of chemotherapy?
  • Will chemotherapy affect my fertility?
  • Are there some kinds of chemotherapy that are more likely to cause premature menopause?
  • Are there ways to prevent fertility loss during treatment?
  • How long after will I be able to get pregnant?
  • How will my doses be chosen and will I be getting a full dose for my exact height and weight?
  • How will I know if the chemotherapy is working?
  • Are there clinical trials that I should consider?
  • What are the short-term side effects?
  • Are there any long-term side effects?
Hormonal Treatments
Am I a candidate for hormonal treatments?

Hormone therapy is beneficial only to breast cancer patients who have hormone (ER+ or PR+) receptor positive cancer. This will be indicated on a pathology report. Receiving hormone therapy is not dependent upon age or stage of cancer although the type of hormonal agent may be.

What are hormonal treatments?
Hormonal treatments target the hormones (or hormone receptors) that can effect the growth of breast cancer cells. Most hormonal therapies target estrogen, which is known to promote the growth of breast cancer cells in tumors that are estrogen receptor positive (ER+). Hormone therapy is given either as an individual treatment or in conjunction with other treatments (i.e. surgery, radiation and chemotherapy). These treatments can be helpful in a number of ways: before surgery to shrink cancer, after treatment to prevent recurrence or after a recurrence to again shrink cancer or keep it under control.
How long do hormonal treatments last?
As stated above there are different reasons for receiving hormonal treatments and each of these have a different time frame. Hormonal treatments given before surgery (neoadjuvant) can last from 3-6 months as long as it is working to shrink the cancer. Treatment after surgery/chemotherapy/radiation (adjuvant) will normally last anywhere from 5-10 years. Finally, treatment given for metastatic disease will be continued as long as it is working to shrink the cancer or keep it under control.
What does menopausal status mean?
Women can be in three different stages of menopause: pre-menopausal (regular period), peri-menopausal (irregular period) or post-menopausal (no longer having periods). Some treatments, such as chemotherapy, may bring about early menopause, especially in women close to the average menopausal age. However, this early menopause is sometimes temporary and so it is important, especially for younger women, to be sure of your menopausal status before deciding on further treatments. A doctor will determine whether you have gone into permanent menopause by testing the levels of the following hormones: estrogen, follicle-stimulating hormone (FSH) and luteinizing hormone (LH). Some treatments, such as aromatase inhibitors, can only be given to post-menopausal women.
What are aromatase inhibitors?
Aromatase inhibitors are the standard of care in hormone receptor positive post-menopausal women. They work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This ensures that less estrogen is available to stimulate the growth of hormone receptor positive breast cancer cells. Some women who experience early menopause may be temporarily put on tamoxifen for a year or two until it is certain that menopause was not temporary before switching to an aromatase inhibitor. Some women choose to go into surgical or medically induced menopause so they can take aromatase inhibitors.
What is tamoxifen?

Tamoxifen is the most commonly prescribed hormonal treatment. It is prescribed for newly diagnosed women, patients with metastatic disease and sometimes, for women at high risk for contracting breast cancer. The usual dosage is 20 mg per day for five years taken in pill form once or twice daily. Tamoxifen blocks the effects of estrogen on breast tissue without changing your body's production of estrogen.

What are the side effects of tamoxifen?
The side effects vary from individual to individual, but can include hot flashes, mood swings, vaginal discharge, inability to concentrate and, less frequently, endometrial cancer, blood clots, weight gain and visual problems. Tamoxifen should not be taken if pregnant because it can cause harmful damage to developing embryos. Furthermore, women should not get pregnant during treatment. Tamoxifen can increase fertility so it is important to use some form of contraception during treatment. Women should discuss with their doctors if they plan on becoming pregnant fewer than five years after treatment to determine the risks and see if other options are available.
Is tamoxifen an effective treatment for premenopausal women?
Studies show that tamoxifen is an effective treatment for young women, and is currently the standard care for pre-menopausal women. It is important to discuss with your doctor whether tamoxifen is right for you and to be aware of other options.
Will hormone treatments affect bone density?
Tamoxifen may have a positive effect on bone mineral density. This can help to prevent such conditions as osteoporosis. However, it has also been found that the treatments are only effective if continued and that short-term treatments may not produce long-term bone density improvement. Hormonal treatment for breast cancer that lowers estrogen levels can also make bones weaker. Research is ongoing as to which treatments increase the chances of bone loss and this is something which should be discussed with your doctor.
What are ovarian suppression and ovarian ablation?

Ovarian suppression and ablation refer to the cessation (stopping) of the production of natural hormones by the ovaries to block those hormones (estrogen and progesterone) from reaching cancer cells and causing them to grow.

  • Ovarian suppression: A pharmaceutically induced menopause. Women will experience a gradual change, which is close to the effects of natural menopause. The long term risks and benefits of ovarian suppression drugs, taken in combination with drugs like tamoxifen and chemotherapy, are currently being researched. There are currently three trials (SOFT, PERCHE, and TEXT), which you can get information about by visiting the BCYW_Research&Trials Research and Clinical Trials section of our website.
  • Ovarian ablation: Achieved through the surgical removal of the ovaries (oophorectomy). Young women who experience ovarian ablation experience menopause immediately and permanently, and the side effects are likely to be more severe than the effects of natural menopause.
What questions should I ask my doctor about hormonal treatments?
  • Am I a candidate for hormonal therapy?
  • Will I benefit from hormonal therapy?
  • How much will I benefit?
  • For what hormonal therapies do I qualify?
  • Which will work best for me and why?
  • Will hormone treatments affect my bone density?
  • What are the side effects of this treatment?
  • Will these treatments affect my ability to get pregnant?
  • What is the likelihood that I will go into early menopause?
  • As a younger woman, do the current statistics apply to me?
  • Are there any clinical trials in which I can take part?
  • How long will I be taking this treatment?
  • When should I start?
  • Will the costs be covered by my insurance?
Reconstruction
How do I decide on reconstructive surgery and when to have it?

First, you will need to decide when or if you want to have breast reconstruction. You may want an immediate reconstruction, or you may want to wait to decide which type of reconstruction is right for you, or you may not want to have reconstruction at all.

There are no right answers - only what's right for you. If you will be considering breast reconstruction at any point, you should see a plastic surgeon before your initial surgery. You should also bear in mind that breast reconstruction almost always involves more than one surgery, including nipple reconstruction if you choose it, and possibly surgery on the other breast to make the body symmetrical. Talk to your doctors about the best and worst possible outcomes for your reconstruction. You can have immediate reconstruction in which you wake up from your breast surgery with a newly constructed breast, or you can decide to wait months or even years.

After surgery you will be given a temporary prosthesis that you can wear during your recovery. When you are ready, you can be fitted by a professional for a prosthesis that will fit into pockets sewn into your bra (and swimsuits) to hold it in place. Breast prostheses come in a wide range of shapes, sizes and skin tones. The costs are generally covered by insurance. They are made of silicone to reproduce the natural curves, weight and feel of your breast, including nipple outline.

Get a feel for the different types of reconstructive surgery by asking questions and doing research. There are more surgical options than ever before. It may help to speak with women who have made different choices, including those who have opted to have no reconstruction. 

What are my options and considerations for reconstruction?

Immediate Reconstruction – This is done immediately following your breast surgery so that you wake up with a new breast. The reconstruction is done by a plastic surgeon during the mastectomy operation itself. The surgeon and the plastic surgeon work together as a team rather than sequentially. Talk to your surgeon before surgery to see if you are a candidate for the procedure.

Implants – Breast implants are silicone sacs filled with either saline or silicone that are placed behind your chest muscle. Sterile saline (salt water) filled implants are used by physicians much more often than silicone-gel filled implants because of concern that silicone leakage could debilitate the immune system. Usually, the plastic surgeon will implant a tissue expander first. This is like an implant, but it is not fully inflated, and so at first, is smaller than your implant will be. In the weeks following surgery, your plastic surgeon will inject saline into the tissue expander until it is fully expanded. Then you will undergo surgery to remove the tissue expander and replace it with your permanent implant.

Flap Reconstruction – Flap reconstruction depends upon your body type and anatomy. Here, tissue and muscle from another part of your body (tummy, back, thigh, buttocks) is used to make a new breast. There are a number of different techniques available:

  • Transverse Rectus Abdominis Myocutaneous (TRAM) Flap – TRAM reconstruction is the most common reconstruction available, taking tissue from the abdomen in a "tummy tuck" procedure. Women who are very thin and lacking excess abdominal fat are not usually candidates for this type of procedure.
  • Latissimus Dorsi Flap – This reconstruction involves the latissimus dorsi muscle (a back muscle located underneath the shoulder) which is turned around to recreate a breast. Normally, an implant will also accompany this procedure in order to create a symmetrical breast. Women with smaller to moderate size breasts are the best candidates for this procedure. While it should not affect upper body strength, it may cause unevenness in the back's appearance.
  • Gluteal Flap – In this reconstruction, tissue is taken from the upper and lower parts of the buttocks and used to reconstruct the breast. This procedure is usually used if the TRAM flap is not an option due to scarring or lack of excess tissue. It is a complicated procedure because of the need to reattach many blood vessels.
  • Deep Inferior Epigastric Perforator (DIEP) Flap – This surgery is much the same as the TRAM flap except the muscles of the abdomen are preserved in this procedure.
  • Superficial Inferior Epigastric Artery (SIEA) Flap – The SIEA Flap and its accompanying veins can be an option for some women whose superficial vessels in the abdominal fatty tissue provide the dominant source of blood flow to this region. This procedure is otherwise the same as the DIEP procedure and represents a second choice for women whose superficial vessels are more dominant than the deep inferior epigastric perforators (DIEPs).  It is not known before surgery whether a woman has an adequately sized SIEA blood vessel. These are looked at by the microsurgeon during surgery, and a determination will be made at that time whether they are suitable to supply a flap. 
  • Gluteal Artery Perforator (GAP) Flap – The GAP Flap procedure allows for reconstruction using your own body’s tissue when there is inadequate abdominal fat to restore your breast to its proper size and shape.  For the woman who is thin or athletic, the breast may be reconstructed with tissue borrowed from the gluteal area. Skin and fatty tissue are collected from the buttocks/hip region without sacrificing underlying muscles. As with the DIEP procedure, the tissue is then sculpted into the new breast mound.  There is a donor site scar on the buttocks.
  • Transverse Upper Gracilis (TUG) Flap – The TUG Flap is taken from the upper inner-thigh area in a crescent shape.  Only a small amount of the gracilis muscle is taken with the flap to ensure a reliable blood supply.  There is no functional consequence to removing the gracilis muscle, which is the same muscle used to reconstruct facial paralysis or forearm injuries.  This flap is coned to create a projecting breast shape, and an immediate nipple and areola reconstruction are also possible with this flap.
What are the advantages and disadvantages to immediate breast reconstruction?
Many women undergo breast reconstruction immediately after breast cancer surgery. Some women wish to avoid subsequent reconstructive surgeries as well as waking up from surgery with the loss of either one of both breasts. However, many women feel they need more time to decide on a type of breast reconstruction in order to consider all options. Immediate reconstruction may not be an option with some treatments or when radiation is required. Make sure to research all options thoroughly and give it careful thought. You might consider discussing with other women who have had reconstructive surgery to determine what is best for you.
How long will the surgery last?
The surgery itself can last from one to six hours depending on the type of reconstruction you choose. Regular implant surgeries are usually one to two hours while more intensive TRAM surgeries can last up to six hours.
How long is the recovery period after reconstruction?

Soreness and tenderness are to be expected within the first two weeks of recovery. There may also be swelling or bruising which could last for many weeks. Most women will require the insertion of a drain, in order to prevent the build up of excess fluid. The entire recovery period could last anywhere from four to six weeks. Flap surgeries generally require longer recovery periods.

What will my new breast look and feel like?
Reconstructed breasts do not have the same feeling and sensation as natural breasts but often look very much like your natural breast did. Ask your plastic surgeon to show you pictures of the results of the different types of reconstruction you are considering. Most plastic surgeons will have picture books. You can also find more information as well as Before and After pictures online. Talk with women who have had the reconstruction you are interested in on our bulletin board. It is important to realize that no surgery will make your breasts look the same as they did before, nor will it erase the pain and suffering caused by your breast cancer diagnosis. Reconstruction can be a tool to restoring normalcy in your life and helping you to get back on track. Many women find, however, that moving on has much more to do with personal courage and perseverance to accepting a "new normal".
What is the cost of reconstructive surgery?
The 1998 Women's Health and Cancer Rights Act requires the coverage of breast cancer reconstruction for mastectomy patients if the health care provider covers mastectomies. The providers must also cover: reconstruction after mastectomy to the affected area, surgery on the other breast if needed to create symmetry, breast prostheses and treatment of conditions that arise from mastectomy, including lymphedema (chronic swelling) of the arm. It is important to talk to your providers and make sure that you are covered as well as to question what the limitations are when it comes to reconstruction.
What is a breast prosthesis?
A prosthesis is a simple alternative to reconstructive surgery if you have had a mastectomy. Fitted for your bras, bathing suits and other forming undergarments, a prosthesis will be fitted in size to match your other breast. Ask your surgeon, a social worker at the hospital or other survivors you know to refer you to a prosthesis fitter (who will be able to sew pockets into your favorite undergarments for the prosthesis). This may be at a specialty boutique (generally only if you live in a larger city), a store within the hospital, or even the lingerie section of department stores. There are also sites on the internet that sell clothing and undergarments for women with breast prosthesis. To find a list visit Shop Well With You.
How soon after surgery should I be fitted for prostheses?
You can start wearing a prosthesis four to six weeks following surgery. Often, patients will be visited by either an organization or a program such as Reach to Recovery while they are still in the hospital to discuss the benefits and to be given a temporary prosthesis.
Will my insurance cover prostheses?
Check your policy before you go for a fitting, but medical insurance should cover aspects of your wardrobe. (Medicare covers one regular prostheses form, as well as one for swimming or sports along with four surgical bras per year, but each insurance policy is different.)
How do I care for a prosthesis?
Most prostheses today are made of a polyurethane exterior with a silicone interior that you can just wash with soap and water, but you do have to replace it about every 3-4 years.
Questions to Ask
  • When can I get a prosthesis?
  • Will it be covered by my insurance?
  • Am I a candidate for reconstructive surgery?
  • What are the types of surgery currently available?
  • Which are possibilities for me?
  • Which would you recommend and why?
  • What are the costs of reconstructive surgery, and will my insurance cover them?
  • Will my breasts look relatively the same? Will they be symmetrical?
  • Will I regain sensation in my breasts? Will they feel the same as before surgery?
  • How much experience do you have performing this type of reconstruction?
  • Are there studies about women's satisfaction with this type of surgery?
  • Am I a candidate for immediate reconstruction? Why or why not?
  • What are the possible complications?
  • How will this affect my other treatments, i.e. chemotherapy or radiation?
  • How many surgeries will I need?
  • How long is the surgery, hospital stay and recovery period for my type of reconstruction?
  • How will the reconstructed breast respond to aging and/or weight gain/loss?
  • What are the latest and most innovative technologies available in reconstruction?
  • Do you have materials that I can take home and read before I make a decision?
  • Do you have pictures of results from previous surgeries you've done that I could look at?
  • How can I talk with other women who have already had this type of reconstruction?
Metastatic Disease
What is a recurrence?

A recurrence is when breast cancer returns after you have completed treatment for your initial diagnosis of breast cancer. This can happen within a relatively short period of time after treatment, many years later or never. There are three types of breast cancer recurrence:

  • Local recurrence: This is when the breast cancer tumor cells grow back in the original site (or breast). If a mastectomy has been performed, this may mean that the cells grow back in the chest wall skin or nearby tissue.
  • Regional recurrence: This is when the breast cancer has spread outside the breast and axillary (underarm) lymph nodes, such as in the pectoral (chest) muscles, internal mammary lymph nodes under the breast bone and between the ribs, in the supraclavicular nodes (above the collarbone) or in the nodes surrounding the neck.
  • Distant recurrence: (or metastasis) This is when the breast cancer has spread through the lymph system or bloodstream to other sites in the body such as the bone, lungs, liver, brain or other organs.
What is metastatic breast cancer?

Metastatic breast cancer, often referred to as advanced breast cancer, is when breast cancer spreads beyond its original site to a different site in the body. Metastatic breast cancer, or metastasis, most often occurs in the bones, lungs, liver and brain, but can show up in other areas of the body. A breast cancer metastasis is still considered breast cancer, regardless of where it may spread. For example, breast cancer metastasis that spreads to the liver is not liver cancer.

What symptoms should I watch for?

Anything unusual that lasts more than two weeks or is severe should be checked out. Keep in mind that cancer patients still get arthritis and the flu, so don't panic. Most women whose breast cancer has metastasized do not show symptoms until the disease is extensive. Symptoms of metastatic breast cancer may include:

  • Bone pain
  • A persistent dry cough that continues for an extended period
  • Shortness of breath
  • Lack of appetite
  • Weight loss
  • Neurological pain or weakness, headaches

While these symptoms may be possible signs of metastasis to the bone, lung, liver or other parts of the body, this does not mean that every woman who experiences them has metastatic breast cancer. There can be a variety of other reasons why you might experience the above symptoms, and they may have nothing to do with cancer of any kind. The important thing is that you listen and pay attention to what your body is trying to tell you and that you seek medical help to determine what may be causing your particular symptom or condition.

Where can breast cancer spread?
Breast cancer has the potential to spread to almost any region of the body. The most common region breast cancer spreads to is the bone, followed by lung and liver.
How do doctors test for metastatic disease?

There are several tests used to detect metastatic disease:

  • Bone scans
  • Chest x-ray
  • CAT scan
  • MRI scan
  • PET scan
  • Blood Tests/Tumor marker tests – Measure markers found in the blood that can be followed over time. Two such markers for breast cancer are CEA and CA 15-3. These markers tend to be elevated in women with metastatic breast cancer. However, because the tests are not very sensitive, they are not usually very useful for patients with early-stage breast cancers.
What are the survival statistics of metastatic breast cancer?
In general, women have more treatment options if their breast cancer is detected early, and their chances of survival are greater. However, this does not mean that women with metastatic breast cancer do not survive. Many breast cancer mental health professionals recommend that women avoid survival statistics. This is because treatment options are constantly being expanded and statistics are old by the time they are reported. However the American Cancer Society website provides some basic statistics.
What are my treatment options?

Since every woman is an individual and each situation is unique to her, the treatment options available may vary. However, treatment of metastatic breast cancer generally involves systemic (whole body) treatment such as chemotherapy and/or hormonal therapy. An overview of the various treatments:

  • Chemotherapy: Common chemotherapy drugs include Taxol, Taxotere, Adriamycin, Navelbine and Xeloda
  • Hormonal Therapy: Common hormonal treatments include Tamoxifen, Raloxifene, Aromasin, Arimidex and Femara (of those, only Tamoxifen is recommended for pre-menopausal women).
  • Herceptin: Available only for patients with HER2-overexpressing tumors. Recent data showed that Tykerb is an option for HER2 overexpressing tumors if Herceptin no longer prevents disease progression or is not an option.
  • Radiation: Can be used if the metastasis is localized. For example, if cancer has spread to only one or a few closely grouped spots on the bone, radiation may be an option. For metastasis to the brain, whole or partial brain radiation may be considered.
  • Surgery: A recent study in the Journal of Clinical Oncology showed that removing the tumor even when breast cancer has metastasized improves survival.
  • Ovarian Suppression or Ablation: shutting down or removing ovaries is an option for estrogen receptor positive breast cancers with antiestrogens or aromatase inhibitors.
Where can I communicate with someone who has metastatic breast cancer or who is knowledgeable about metastatic disease?
  • The YSC  Programs_Mets MetsLink program is designed to provide information, resources and support for young women with metastatic breast cancer.  
  • The YSC Programs_Survivor SurvivorLink</link> program will match young women with others who have been through a similar situation. Contact ResourceLink at 877.YSC.1011 or resourcelink@youngsurvival.org for a referral to a trained SurvivorLink volunteer.
  • You can meet and talk with other young women about metastatic disease on the YSC bulletin board, or read Survivor Stories from women living with metastatic disease on our website.
  • The Y-ME National Breast Cancer Organization has a 24-hour hotline you can call for services and support: 1.800.211.2141
  • www.advancedbc.org is a website dedicated to information and support for women facing advanced breast cancer.
  •  www.bcmets.org has an advanced breast cancer list serve for women of all ages, though many young women are represented on the list.
  • www.mbcnetwork.org is a national independent advocacy group of and for people with metastatic breast cancer. Their intent is to give metastatic breast cancer patients a greater voice in the breast cancer community.
Inflammatory Breast Disease
What is Inflammatory Breast Cancer (IBC)?
IBC is the most aggressive form of breast cancer and has a faster doubling time than other breast cancers. (Doubling time is the time it takes for cancer cells to divide and grow.) IBC usually grows in nests or sheets in the breast rather than a solid tumor.
Don't you have to have a lump in your breast to have breast cancer?
No. Since IBC grows in the dermal lymphatic system there is often no breast lump. The cancer cells clog the lymph vessels just below the skin giving the classic symptoms of warmth and color changes to the skin.
What are the symptoms of IBC?
  • Rapid, unusual increase in breast size
  • Redness, rash, blotchiness or other skin color changes on the breast
  • Persistent itching of breast or nipple
  • Lump or thickening of breast tissue
  • Stabbing pain and/or soreness of breast
  • Feverish breast
  • Swelling of lymph nodes under the arm or above the collar bone
  • Dimpling or ridging of breast
  • Flattening or retracting of nipple
  • Nipple discharge or change in pigmented area around nipple

Although the above symptoms may indicate a benign breast disorder, any change to your breast(s) should be reported to your healthcare professional immediately. In addition, these symptoms may appear quickly and suddenly.

How is IBC detected?
Unfortunately, mammograms and ultrasounds often miss IBC unless there is a defined tumor. If you notice any of the symptoms listed above, see your doctor so he or she can begin the diagnostic procedures.
How is IBC diagnosed?
A skin punch biopsy, a needle core biopsy, MRI and/or PET scan may assist in diagnosis. Any biopsy must include the skin and tissue in the layers below the skin surface. The biopsy report may say "dermal lymphatic involvement" rather than inflammatory breast cancer.
What if the doctor says I have mastitis and puts me on an antibiotic?
Since IBC symptoms are similar to those of mastitis, a benign breast infection, it is often misdiagnosed as such. After 7-10 days on antibiotics without significant improvement, insist on a biopsy.
My doctor says I'm too young to have IBC. Is that possible?
IBC can occur at any age, although the incidence of IBC is higher in younger women. Though rare, even teenagers have been diagnosed with IBC.
My doctor says that my rash is from detergent.
While skin rashes can be caused by allergic reactions or sensitivities to soaps and detergents, if a rash on your breast persists or doesn't improve after you change detergents; it is time to reassess the original diagnosis.
I've heard that breast cancer doesn't hurt. Is that true?
Breast pain can come from hormonal changes and other non-cancer causes. However, more often than not pain accompanies IBC, so breast pain should not be ignored.
If my doctor says "it's nothing" but I still have symptoms, what should I do?
Since IBC makes up only 1-5% of all breast cancers, many doctors are not familiar with the disease and may not recognize it or make the correct diagnosis. If you're not satisfied with the answer get a second opinion from a breast care specialist who is knowledgeable about IBC.
How is IBC treated?
Current treatment starts with chemotherapy, which usually continues until there is sufficient clinical response to permit surgery. A modified radical mastectomy and axillary lymph node dissection are performed. Radiation and possibly more chemotherapy follow. In some cases hormonal treatment is used. Individual treatment can vary depending on specific circumstances. It is important to find a physician familiar with IBC to receive the best possible treatment.
Are there clinical trials for IBC patients?

Clinical trials are often available for patients with IBC. You can find information on these on the Inflammatory Breast Cancer Research Foundation website – www.ibcresearch.org. In addition, you can visit the BCYW_Research&Trials Research and Clinical Trials section of our website to get information on how to find breast cancer clinical trials.

Where can I find more information on IBC?
The Inflammatory Breast Cancer Research Foundation is the only organization dedicated solely to inflammatory breast cancer. Visit their website at www.ibcresearch.org or call their toll-free telephone line at 877.786.7422 for more information.
Clinical Trials and New Treatments
What is a clinical trial?

Clinical trials are research studies in which patients help doctors find ways to improve health and cancer care. Each study tries to answer scientific questions and to find better ways to prevent, diagnose or treat cancer.

Should I consider participating in a clinical trial?
Sometimes clinical trials give patients the chance to benefit from improved treatment methods before the new treatment becomes the standard of care for all breast cancer patients. However, there are usually several phases of clinical trials for each new treatment studied, and earlier trials may consist of smaller doses in order to determine efficacy and observe side effects. It is important to ask about clinical trials before you receive any treatment because certain treatments may disqualify you from some clinical trials. You should only participate in clinical trials at reputable cancer centers that have obtained the necessary National Cancer Institute and FDA approvals.
How do I find out about clinical trials?

Ask your doctor about clinical trials for which you might qualify. You can find a listing of current trials from the BCYW_Research&Trials Research and Clinical Trials section of our website. You can also contact the NCI Cancer Information Service at 1-800-4-CANCER, or visit the NCI website for listings or visit www.breastcancertrials.org.

Post Treatment
How do my doctors monitor me after I'm done with treatment?

Once you are finished with your treatment (surgery, chemotherapy and radiation), you will continue to have regular check ups with your doctors. You will see one of your doctors -- surgeon, oncologist and radiation oncologist -- every 8-10 weeks to receive a physical exam as well as a blood test. These exams will become less frequent as time goes on. You will have an annual mammogram (and possibly sonogram), and you may have annual bone scans and/or chest x-rays. It is important that even beyond five years after diagnosis you continue your relationship with your healthcare team and continue follow-up visits although perhaps less frequently.

Your gynecological exams will be more comprehensive, as anyone who has survived breast cancer is now at slightly higher risk for other female gynecological cancers. Discuss with your gynecologist options for more comprehensive monitoring. This might mean more frequent visits or even vaginal sonograms on an annual basis.
How do I handle the fear of recurrence and the emotional aftermath of cancer?

Part of the aftermath of the breast cancer experience is very similar to the post-traumatic stress disorder syndrome often experienced by war survivors. You may become paranoid about the cancer returning, and you may feel a little like a hypochondriac. These are part of the survival instincts. Every time you have a pain in your joints or bones, you may be frightened that it's a recurrence, rather than just simply an inflammation or strain. You can manage anxiety by realizing that what you are feeling is normal. Don't ever think an ache or pain is too small to mention to one of your doctors, especially if it lasts more than a few weeks. Many women agree that this fear, although present, will subside with the passage of time.

While you might not want to hear about anything to do with cancer, it is important to help yourself by staying informed. Even after treatment, new research and technologies can affect your long-term health.

How can I turn my experience into action and advocacy?

Many women find that turning their efforts toward action and advocacy at the end of treatment can be both rewarding and empowering. Some take part in marathons or volunteer at local organizations. Young Survival Coalition is the product of women who were determined to turn their experiences into something positive to help empower other young women. Action as seemingly simple as sharing your story can make a huge impact in other young women's lives as well as in the fight for a cure. You can learn more about opportunities in the Advocacy section of our website or read about  Upcoming Events. You might also wish to volunteer for our SurvivorLink program for other young women affected by breast cancer.

Pregnancy and Breast Cancer
Can I get breast cancer during pregnancy?
Breast cancer is the most common cancer in pregnant and postpartum women. It occurs in about 1 in 3,000 pregnant and lactating women. The detection of a lump may be hindered by the natural tenderness and engorgement of the breasts of pregnant and lactating women. It is important to know what is normal for your breasts and to be aware of any changes in their look or feel and to have a clinical breast exam as part of routine doctor's visits if you are pregnant or lactating.
What are treatment options if I am diagnosed during pregnancy?
Effective treatment, including surgery and chemotherapy, can be administered during certain times of pregnancy. Treatment will be decided based on the stage of fetus development and the stage of cancer. The use of radiation therapy during the first and second trimester of pregnancy is not recommended due to the inability to shield the baby from the radiation. For women in early stages of cancer, treatment usually consists of a mastectomy followed by chemotherapy in the second trimester. Chemotherapy given after the first trimester does not put the fetus at any greater risk, although low birth weight is sometimes a concern. Women at more advanced stages of cancer have much more difficult choices laid before them as to whether they should delay treatment until after birth or start a less aggressive form of chemotherapy, which may not be affective to fight their cancer. It is important for women facing these choices to discuss possible implications with physicians and specialists, as well as to get support from their friends, family and partners.
Can I get pregnant after breast cancer and when?

Some women can and do become pregnant after breast cancer, but because not enough studies have been done on this subject women should talk to their doctors if they are considering becoming pregnant. It is important to realize that certain cancer treatments can affect one's ability to bear children, and careful thought and planning is necessary to preserve fertility before and during treatment.

There are some clinical issues to consider when thinking about pregnancy after breast cancer:

  • Estrogen receptor status of cancer cells – If cancer cells were estrogen-receptor positive, it may be riskier to get pregnant. With the hormonal surges associated with pregnancy, both estrogen and progesterone, it can be possible for dormant cancer cells to become active.
  • Impact of chemotherapy on ovaries – At birth, every woman is born with a full complement of eggs in her ovaries to last a lifetime, expending one each month with her menstrual cycle. However, chemotherapy can damage ovaries in a variety of ways. Even if you didn't experience menopause, chemotherapy may kill some eggs completely, or may have damaged your remaining eggs, so they may be incapable of fertilization or may cause genetic defects. To some extent, a fertility specialist can determine the quality of your eggs and whether you have a chance at a successful pregnancy. Treatment may not put you into menopause immediately, but it could happen earlier in life than without a treatment history.  
  • Year of survival – While there is some debate, some oncologists recommend that you wait until you are past your five-year survival mark to consider pregnancy due to the impact it may have on your body. Others recommend waiting only two years.
  • Limited fertility options – You might be unable to get pregnant the natural way, for a variety of reasons, some of which may have nothing to do with your cancer history. But as a cancer survivor, your options for fertility treatments may be more restricted, as many fertility programs include significant hormone stimulation.
  • Extended Treatment – Some women require additional hormonal therapy after treatment, such as five years of Tamoxifen, which can further delay pregnancy.  Speak with your doctor about the possibility of taking a break from Tamoxifen to have children.
Will breast cancer during pregnancy affect my unborn child?
There is no evidence that breast cancer will affect a baby's development nor that cancer can be passed on to a baby in the womb.
Is breastfeeding possible after breast cancer?
If you have had a mastectomy or lumpectomy with radiation you can still breast feed from the unaffected breast. In fact, your remaining breast may produce more milk to compensate. If you are diagnosed during or immediately following pregnancy, breastfeeding can be harmful to babies as chemicals from drug treatments can pass through the milk ducts.
Can I preserve my fertility?
Fertility preservation is an important issue to many women, especially young women diagnosed with breast cancer. There is usually time between a diagnosis and chemotherapy where egg harvesting is possible. Embryo freezing, where eggs are fertilized using a partner's or donor's sperm, is the most effective preservation technique. Egg freezing is another possibility for one who wants to retain the option to have the biological children of a future partner. However, pregnancy rates are low – “approximately 3% of eggs stored result in pregnancies. It is still important to discuss all options with both your physician and a fertility specialist. While fertility preservation is a highly viable option which can often lessen the effects of a loss of fertility on a woman, it is also expensive and is not often covered by insurance. Organizations such as Fertile Hope offer financial assistance for fertility preservation.
Do I risk passing on this disease to my child if I get pregnant?
80% of women who are diagnosed with breast cancer have no family history. There are, however, two gene mutations, (BRCA1 and BRCA2) that put women at a high risk for breast cancer. A woman with the BRCA 1 or 2 gene mutation, with a partner who does not, has a 50% chance of passing this gene onto her children. Only 10% of women with breast cancer have these gene mutations, but it is believed that the mutation is more common in women diagnosed at a young age. If you have concerns about the possibility of passing on a genetic risk of breast cancer, make an appointment to speak to a genetic counselor. More information on this subject can be found in the Genetic Testing section of the FAQs.
Questions to Ask
  • What are my treatment options for my stage of pregnancy/stage of cancer?
  • Is there a risk to my baby because of these treatments?
  • Can I delay treatment until after the birth? Why or why not?
  • What is the likelihood that my cancer will advance with delayed treatment?
  • When can I get pregnant after treatment?
  • Am I a candidate for in vitro fertilization?
  • Can I breastfeed my baby?
  • Can you recommend a genetic counselor?

More and more research is being done every year on the subject of breast cancer and pregnancy with the hope that soon women will have more options open to them. You can find some of the more recent studies in the Published Research section of our website, and we encourage women to keep up to date with all new studies and innovations occurring in this field.

You may also want to visit the following websites for more information:

Hereditary Breast Cancer and Genetic Testing (FAQs on this topic created together with FORCE)

What is hereditary cancer?
Hereditary cancer refers to cancer that is caused by a gene mutation that is present at birth and in all cells of the body. This gene change makes individuals more likely to develop cancer in their lifetime but doesn't mean they will definitely develop the disease. Certain cancers, including those of the breast, ovary and colon, are more likely than others to be hereditary.
How common is hereditary breast cancer?
Approximately 10% of breast cancer is considered "hereditary." The majority of breast cancers, however, are called "sporadic," meaning we don't know why they happened.
How can I determine if the breast cancer in my family is hereditary?
Important factors in determining if the breast cancer in a family is hereditary include: the age of onset of breast cancer; the presence of certain other types of cancer in a family; and the number of relatives with cancer and their relationship to you. A genetic counselor will look at your family's medical information (called a pedigree) including the medical information on first-degree relatives (parents, siblings and children), second-degree relatives, (grandparents, aunts and uncles) and third-degree relatives (cousins).
Two of my close relatives have had breast cancer. Does that mean that I will get breast cancer, too?
Having two relatives on the same side of the family with breast cancer can be significant. However, even if your mother, sister or daughter has had breast cancer, this does not mean that you will definitely get breast cancer. In addition, it is important to remember that hereditary cancer risk can be passed down from your mother or your father. When looking at your family medical history, you need to look at both sides of the family.
Can I still get breast cancer even without a family history of the disease?
A woman with no family history of cancer can still develop breast cancer. In the United States every year more than 200,000 women will be diagnosed with breast cancer; five percent of these cases (11,000 women) will be in women age 40 and under.
Should I have genetic testing?
The decision to undergo genetic testing is a very personal one. There is no right or wrong choice; however, genetics is an area of cancer research where knowledge is growing rapidly. It is important to get the most up-to-date information from healthcare providers who are specially trained in cancer genetics when you are making the decision whether to have genetic testing.
What are the benefits and limitations of genetic testing for a BRCA mutation?

The benefits of genetic testing can vary depending on individual circumstances. Knowing your BRCA genetic status can be very empowering. Should you test positive for a known mutation, genetic testing can allow you to choose medical options to lower your risk for cancer or detect the disease at an early stage. It may also qualify you to participate in research studies that are looking for better ways to detect cancer early or to prevent cancer. However, not everyone views the knowledge of cancer risk as a benefit. The limitations of the test are complex. Genetic testing impacts both the individual undergoing testing and other members of the family. Some people may find the information and uncertainty associated with risk overwhelming, especially at first. And since the test itself can only identify the two most common genes involved in hereditary breast cancer, under certain circumstances, a negative test may not rule out hereditary breast cancer in your family. Because not every person who carries a mutation will get cancer, it is very important to remember that genetic testing cannot detect breast cancer nor can it tell you with certainty if you will get breast cancer at some point in your life.

What can be done to decrease my risk for breast cancer if I test positive for a gene mutation?
There are several options available for breast cancer risk reduction in high-risk women. Chemoprevention involves taking a medication to lower the risk for cancer. Tamoxifen is a medication that has been approved to lower breast cancer risk in certain high-risk women and appears to lower risk by up to 50%. Other medications are being researched. Surgical removal of healthy breasts and/or ovaries, known as prophylactic surgery, can effectively lower the risk for breast cancer in high-risk women as much as 95%. In addition to risk reduction options, increased surveillance tools such as Magnetic Resonance Imaging (MRI) and ultrasound can be used in conjunction with mammography to assist in detecting breast cancer at its earliest and most treatable stage. These tools and others, such as ductal lavage, are currently being studied to see if they improve outcome for high-risk women who choose surveillance. None of these options eliminate the risk for breast cancer. In addition, each option has its own benefits and risks. It is important to choose a healthcare team that is trained in managing high-risk women and discuss each option thoroughly with them.
I have already been diagnosed with breast cancer. Is genetic testing still worthwhile for me?
Genetic test results can provide information that affects treatment choices and follow-up care for breast cancer patients and survivors. Further, if a cancer survivor is the first person to have a genetic test in a family, that test result may help identify the cause of hereditary cancer in a family. This information can help other family members make decisions about genetic counseling and testing.
Should my young children have genetic testing for the BRCA mutations?
The high-risk cancers that occur in carriers of a BRCA1 or BRCA2 mutation do not occur in childhood. Because there are no beneficial medical options to offer children who carry a BRCA mutation, medical professionals recommend against BRCA testing for minors. This also allows individuals to make their own informed decisions, as adults, about whether they want to undergo genetic testing. Further, because tremendous strides are being made in cancer genetic research, it is likely that more effective surveillance and risk reduction strategies will be available by the time they reach adulthood.
Are there other cancers associated with BRCA mutations?

The BRCA1 and BRCA2 gene mutations are linked primarily to breast and ovarian cancer, but BRCA2 mutations also carry a somewhat higher risk for other cancers, including melanoma and prostate cancer in men.

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