Welcome to the MBC Community
***Some newly diagnosed patients benefit immensely from educating themselves on metastatic breast cancer while others find more solace in focusing their attention elsewhere. (I personally fell somewhere in the middle. I wanted to learn about my illness to a point, and then it felt too overwhelming.) The point is, there is no “right” way to do metastatic breast cancer. If you would like to educate yourself further, please read on to learn more about breast cancer terminology. If, however, you are a newly diagnosed patient who’s come to this site specifically for hope and comfort, you may want to head directly over to the Long-Term Survivors page. ***
Metastatic breast cancer “jargon” can leave your head spinning! There are just so many terms coming at you from every direction. If you would like to educate yourself, here are terms organized into categories: breast cancer subtypes, diagnostic tools, treatment options & terms, and anatomy. I’ve culled these definitions from Susan G. Komen’s website (and tweaked them slightly). Please go to https://ww5.komen.org/BreastCancer/Glossary.html for a more complete list of breast cancer terms. These are just those I found to be helpful specifically for the metastatic community.
First of all, it’s important to truly understand the definition of metastatic breast cancer.
Metastatic Breast Cancer is not a type of breast cancer, but simply breast cancer (Stage IV) that has spread beyond the breast to the bones and/or organs. Getting a biopsy of the primary tumor (or a secondary tumor outside the breast) will help determine the specific type of breast cancer a patient has and help dictate a treatment plan. Patients who are Stage IV at their initial diagnosis are often referred to as “de novo”, while those who were initially diagnosed with early stage breast cancer before a later Stage IV diagnosis are classified as having a distant recurrence.
BREAST CANCER SUBTYPES
Hormone Receptor-Positive cancer (also referred to as ER/PR+). A cancer’s hormone receptor status shows whether or not a breast cancer needs hormones to grow. A hormone receptor-positive (estrogen and/or progesterone receptor-positive) cancer needs hormones to grow. A hormone receptor-negative (estrogen and/or progesterone receptor-negative) cancer does not need hormones to grow.
HER2-positive cancer (Human Epidermal Growth Factor Receptor 2, HER2/neu, erbB2)
A protein involved in cell growth and survival that appears on the surface of some breast cancer cells. HER2-negative breast cancers have little or no HER2 protein. HER2-positive breast cancers have a lot of HER2 protein. HER2-positive tumors can be treated with HER2-targeted therapies, such as trastuzumab (Herceptin).
Inflammatory Breast Cancer
A rare, aggressive form of invasive breast cancer. Its main symptoms are swelling (inflammation) and redness of the breast. The skin on the breast may look dimpled, like the skin of an orange, and may be warm to the touch.
Triple Negative Breast Cancer
A breast cancer that is estrogen receptor-negative, progesterone receptor-negative and HER2-negative.
Triple Positive Breast Cancer
A breast cancer that is estrogen receptor-positive, progesterone receptor-positive and HER2-positive.
TREATMENT OPTIONS & TERMS
Aromatase Inhibitors
Hormone therapy drugs that lower estrogen levels in the body by blocking aromatase, an enzyme that converts other hormones into estrogen. Aromatase inhibitors are used to treat hormone-receptor positive breast cancer.
CDK4/6 Inhibitors
A class of drugs designed to interrupt the growth of cancer cells by blocking the enzymes CDK4 and CDK6 (important in cell division). Abemaciclib (Verzenio) is an example of a CDK4/6 inhibitor used to treat breast cancer.
Chemotherapy
A drug or combination of drugs that kills cancer cells.
Complementary Therapies (Integrative Therapies)
Therapies (such as acupuncture or massage) used in addition to standard medical treatments. Complementary therapies are not used to treat cancer, but they may help improve quality of life and relieve some side effects of treatment or the cancer itself. When complementary therapies are combined with standard medical care, they are often called integrative therapies.
Dose-Dense Therapy
Chemotherapy given over a shorter (more condensed) time period compared to standard therapy. The frequency of treatment sessions is increased, so the length of the treatment period is shortened.
First-Line Therapy
The initial (first) therapy used in a person’s cancer treatment.
Generic
The chemical name of a drug, not the brand name. The chemical formulas of a generic drug and the brand name drug are the same.
Genetic Counseling
A discussion between a genetic counselor or other trained health professional and a person concerned about inherited gene mutations related to health risks. The person’s personal and family health history are discussed. Genetic counseling helps determine whether or not genetic testing is appropriate. The risks and benefits of genetic testing are also discussed.
HER2 Targeted Therapies
Drugs designed to target and treat HER2-positive breast cancers. The breast cancers have a lot of HER2 protein on the surface of their cells. Trastuzumab (Herceptin) is an example of a HER2-targeted therapy.
Hormone Therapy (Endocrine Therapy)
Treatment that works by keeping cancer cells with hormone receptors from getting the hormones they need to grow.
Hospice
A philosophy of care focusing on improving quality of life and easing pain and other symptoms at the end stage of a terminal illness. Hospice care also provides support services to patients and their families.
Immunotherapy
Therapies that use the immune system to fight cancer. These therapies target something specific to the biology of the cancer cell, as opposed to chemotherapy, which attacks all rapidly dividing cells. Atezolizumab (Tecentriq) is an example of a checkpoint inhibitor immunotherapy drug used to treat breast cancer.
Investigational New Drug (New Experimental Treatment)
A chemical or biological drug approved for use by researchers in studies,but is not yet available outside of a clinical trial.
Lumpectomy (Breast Conserving Surgery)
Breast surgery that removes only the tumor and a small rim of normal tissue around it, leaving most of the breast skin and tissue in place.
Macrobiotics (Macrobiotic Diet)
A complementary or integrative dietary therapy that includes a mostly vegetarian, organic food diet with certain methods of food preparation.
Menopausal Hormone Therapy (Postmenopausal Hormone Use, Hormone Replacement Therapy)
The use of hormone pills containing estrogen (with or without progestin) to ease symptoms of menopause.
Microvascular Surgery
Surgery that involves connecting small blood vessels.
Modified Radical Mastectomy
Surgical removal of the breast, the lining of the chest muscles and some of the lymph nodes in the underarm area. Used to treat early and locally advanced breast cancer.
Molecular Breast Imaging (Nuclear Medicine Imaging of the Breast)
An imaging technique that uses short-term radioactive agents given through an IV. Cancer cells absorb these agents and can be imaged with a special camera. Molecular breast imaging is not a standard breast cancer screening tool. Breast-specific gamma imaging and positron emission mammography are types of molecular breast imaging.
Multimodality Therapy
Use of 2 or more treatment methods (such as surgery, radiation therapy, chemotherapy, hormone therapy and HER2-targeted therapy) in combination, or one after the other, to get the best results.
Naturopathy (Naturopathic Medicine)
A medical system based on a belief in using natural elements to maintain health and to help the body heal itself. It includes nutrition and massage.
Neoadjuvant Chemotherapy (Induction Chemotherapy, Primary Chemotherapy, Preoperative Chemotherapy)
Chemotherapy used as a first treatment (before surgery). Often used for large or locally-advanced breast cancers (including inflammatory breast cancer) to shrink tumors before surgery.
Neoadjuvant Hormone Therapy
Hormone therapy used as a first treatment (before surgery). Often used for large or locally-advanced breast cancers to shrink tumors before surgery.
Neoadjuvant Therapy (Preoperative Therapy)
Chemotherapy or hormone therapy used as a first treatment (before surgery). Often used for large or locally-advanced breast cancers to shrink tumors before surgery.
Ovarian Suppression
The use of drug therapy or surgery to prevent the ovaries from making estrogen. It stops menstrual periods and lowers hormone levels in the body (similar to a natural menopause). This slows the growth of estrogen receptor-positive breast cancer in premenopausal women by preventing the tumor from getting the estrogen it needs to grow. Ovarian suppression is always given in combination with tamoxifen or an aromatase inhibitor.
Oophorectomy
Surgical removal of the ovaries.
Palliative Care (Palliative Therapy, Palliation)
Care at any stage of disease focused on relieving or preventing symptoms (like pain) rather than treating disease. It’s part of care for people with early breast cancer as well as for those with metastatic breast cancer.
PARP (Poly(ADP-ribose) Polymerase) Inhibitors
A class of drugs that blocks an enzyme involved in tumor DNA repair (called PARP enzyme). These drugs can help chemotherapy better kill cancer cells. Olaparib (Lynparza) is an example of a PARP inhibitor used to treat breast cancer.
Peripherally Inserted Central Catheter (PICC)
A small tube used to deliver medicine to the body through a vein. Instead of being reinserted for each use, a PICC is left in place to allow access for a long period of time (weeks to months).
PI3 Kinase Inhibitors
A class of drugs designed to interrupt PI3 kinase signals and stop the growth of cancer cells with PIK3CA gene mutations. Alpelisib (Piqray) is an example of a PI3 kinase inhibitor used to treat breast cancer.
Placebo
An inactive medicine sometime used to have a comparison to a new drug in a clinical study. May be called a “sugar pill.”
Precision Medicine (Personalized Medicine)
Using information about a person’s genes, the tumor’s genes, molecular characteristics of the tumor and the environment to prevent, diagnose and treat cancer. This may also be known as personalized medicine.
RAD (Dose of Radiation)
Short for “radiation absorbed dose.” This term describes the amount of radiation absorbed by the tissues.
Radiation Therapy (Radiotherapy)
Treatment given by a radiation oncologist that uses targeted, high-energy X-rays to kill cancer cells.
Radical Mastectomy (Halsted Radical)
Surgical removal of the breast, chest muscles and underarm lymph nodes. Used only when the breast tumor has spread to the chest muscles.
Raloxifene
A drug first used to treat osteoporosis and now also used to lower the risk of breast cancer in postmenopausal women at high risk.
Selective Estrogen Receptor Modulator (SERM)
A drug that can either block the effects of estrogen or behave like estrogen, depending on the part of the body being treated. Tamoxifen and raloxifene are SERMs.
Skin-Sparing Mastectomy
A procedure that surgically removes the breast, but keeps intact as much of the skin that surrounds the breast as possible. This skin can then be used in breast reconstruction to cover a tissue flap or an implant instead of having to use skin from other parts of the body.
Standard Treatment (Standard of Care)
The usual treatment of a disease or condition currently in widespread use and considered to be of proven effectiveness on the basis of scientific evidence and past experience.
A physician specializing in the treatment of cancer using surgical procedures.
Systemic (Adjuvant) Treatment
Treatment given in addition to surgery and radiation therapy to treat breast cancer that may have spread to other parts of the body. It may include chemotherapy, hormone therapy and/or HER2-targeted therapy.
Tamoxifen (Nolvadex)
A hormone therapy drug (taken in pill form) used to treat early and advanced stage breast cancers that are hormone receptor-positive. These breast cancers need estrogen to grow. Tamoxifen stops or slows the growth of these tumors by blocking estrogen from attaching to hormone receptor in the cancer cells.
Targeted Therapy
Drug therapies designed to attack specific molecules or proteins involved in the development of cancer. HER2-targeted therapies, such as trastuzumab (Herceptin), and PI3 kinase inhibitors, such as alpelisib (Piqray), are examples of targeted therapies used to treat breast cancer.
Total Mastectomy (Simple Mastectomy)
Surgical removal of the breast but no other tissue or nodes. Used for the treatment of ductal carcinoma in situ and, in some cases, breast cancer recurrence.
Trastuzumab (Herceptin)
A drug that is a specially made antibody that targets cancers with a lot of HER2 protein on the cancer cells. When attached to the HER2 protein, trastuzumab slows or stops the growth of the cancer cells. Trastuzumab is used to treat HER2-positive breast cancer. Herceptin is the brand name for trastuzumab.
Tyrosine-Kinase Inhibitors
A class of drugs that target enzymes important for cell functions (called tyrosine-kinase enzymes). These drugs can block tyrosine-kinase enzymes at many points along the cancer growth pathway. Lapatinib (Tykerb) is an example of a tyrosine-kinase inhibitor used to treat breast cancer.
BIOLOGY
BRCA1 and BRCA2 Genes (Breast Cancer Genes)
Genes that help limit cell growth. A mutation (change) in one of these genes increases a person’s risk of breast, ovarian and certain other cancers.
Edema
Excess fluid in body tissues that causes swelling.
Estradiol
The most biologically active, naturally-occurring estrogen in women.
Estrogen
A female hormone produced by the ovaries and adrenal glands that’s important to reproduction. Some cancers need estrogen to grow.
Estrogen Receptors
Special proteins in cells that estrogen hormones attach to. A high number of estrogen receptors in a breast cancer cell often means the cancer cell needs estrogen to grow.
Genes
The part of a cell that contains DNA. The DNA information in a person’s genes is inherited from both sides of a person’s family (you get half of your genes from your mother and half from your father).
Gene Expression
Process in which a gene gets turned on in a cell to make RNA and proteins.
Gene Mutation
Any change in the DNA (the information contained in a gene) of a cell. Gene mutations can be harmful, beneficial or have no effect.
Germline Mutation
An inherited change in the genetic code of a person that affects the function of a gene. Germline mutations can be passed on from parents to children (you get half of your genes from your mother and half from your father). Also called inherited gene mutation.
HER2 (Human Epidermal Growth Factor Receptor 2, HER2/neu, erbB2)
A protein involved in cell growth and survival that appears on the surface of some breast cancer cells. HER2-negative breast cancers have little or no HER2 protein. HER2-positive breast cancers have a lot of HER2 protein. HER2-positive tumors can be treated with HER2-targeted therapies, such as trastuzumab (Herceptin).
Hormone Receptors
Specific proteins in cells that hormones attach to. A high number of hormone receptors on a breast cancer cell often means the cancer cell needs the hormone to grow.
Lesion
Area of abnormal tissue.
Locally Advanced Breast Cancer
Cancer that has spread beyond the breast to the chest wall, the skin of the breast or to many lymph nodes in the underarm area, but not to distant organs such as the lungs or liver.
Lymph Node Status
Shows whether or not cancer has spread to the lymph nodes. Lymph node-positive means the lymph nodes contain cancer (the cancer has spread to the lymph nodes). Lymph node-negative means the lymph nodes do not contain cancer.
Lymphatic System
The network of lymph nodes and vessels in the body.
Lymphedema
Swelling due to poor draining of lymph fluid that can occur after surgery to remove lymph nodes or after radiation therapy to the area. Most often occurs in the upper limbs (arm, hands or fingers), but can occur in other parts of the body.
Lymph Nodes (Lymph Glands)
Small groups of immune cells that act as filters for the lymphatic system. Clusters of lymph nodes are found in the underarms, groin, neck, chest and abdomen.
Malignant
Cancerous.
Margins
The rim of normal tissue surrounding a tumor that’s removed during breast surgery. A margin is clean (also known as uninvolved, negative or clear) if there’s only normal tissue (and no cancer cells) at the edges. Clean margins show the entire tumor was removed. With involved (also known as positive) margins, normal tissue doesn’t completely surround the tumor. This means the entire tumor was not removed and more surgery may be needed to get clean margins.
Melatonin
Hormone made by the pineal gland in the brain. It’s an important part of the body’s internal timing system.
Menopause
The ending of the normal menstrual cycle in women. It occurs most often in the late 40s or early 50s.
Metastasis
The spread of cancer to other organs through the lymphatic and/or circulatory system. Metastases is the plural of metastasis.
Metastasize
When cancer cells spread to other organs through the lymphatic and/or circulatory system.
Microcalcifications
Small, clustered deposits of calcium in the breast that may be seen on a mammogram. These may or may not be related to breast cancer.
Monoclonal Antibodies
Immune proteins that can locate and bind to cancer cells. They can be used alone or they can be used to deliver drugs, toxins or radioactive material directly to tumor cells. Trastuzumab (Herceptin) is an example of a monoclonal antibody used to treat breast cancer..
mTOR (Mammalian Target of Rapamycin) Inhibitors
A class of drugs that may increase the benefit of hormone therapy. Everolimus (Afinitor) is an example of an mTOR inhibitor.
Multifocal Tumors (Multicentric Tumors)
One or more tumors that develop from the original breast tumor.
Mutation (Gene Mutation)
Any change in the DNA (the information contained in a gene) of a cell. Gene mutations can be harmful, beneficial or have no effect.
Neoplasia
Abnormal growth.
Neoplasm
Excess number of cells in a mass that can be either benign (not cancer) or malignant (cancerous).
Nucleus
The part a cell that contains the genetic material DNA. Nuclei is the plural of nucleus.
Oligometastasis
Cancer cells that have spread (metastasis) from the original tumor and formed a small number of new metastatic tumors in a few other parts of the body. These tumors may grow more slowly than other metastatic tumors.
Osteoporosis
A condition marked by a loss of bone mass and density, causing bones to become fragile.
Peri-Menopause
The time in a woman’s life prior to menopause when menstrual periods become irregular and some menopausal symptoms may begin.
Phenotype
A characteristic in a person that results from the interaction between his/her genes and his/her environment.
Phyllodes Tumor
A rare sarcoma (cancer of the soft tissue) in the breast.
Pituitary Gland
A part of the brain that controls growth and other glands in the body, such as the ovaries.
Premenopausal Women
Women who have regular menstrual periods.
Primary Tumor
The original cancer.
Progesterone
A hormone made by the body that is important in menstrual cycles and pregnancy. May be made in a lab (called progestin) and used in birth control pills, menopausal hormone therapy and other types of hormone treatment.
Progesterone Receptor
Specific proteins in cells that progesterone hormones attach to. A high number of progesterone receptors in a breast cancer cell often means the cancer cell needs progesterone to grow.
Progestin
Any substance (natural or made in a lab) that has some or all of the effects of progesterone in the body.
Recurrence (Relapse)
Return of cancer. Local recurrence is the return of cancer to the same breast or the same side chest wall. Distant recurrence is the return of cancer that has spread to other parts of the body, such as the lungs, liver, bones or brain.
Regression
The shrinking of a tumor.
Supraclavicular Lymph Nodes
The lymph nodes above the clavicle (collarbone).
Tumor
An abnormal growth or mass of tissue that may be benign (not cancer) or malignant (cancerous).
Vaginal Atrophy (Atrophic Vaginitis)
A condition where the lining of the vagina becomes thin and dry due to a decrease in estrogen. It causes vaginal dryness, pain during intercourse and other symptoms. It most commonly occurs in women who have gone through menopause.
DIAGNOSTIC TOOLS
Biopsy
Removal of tissue to be tested for cancer cells.
Bone Scan
A test done to check for signs of cancer in the bones. A small amount of radioactive material is injected into the bloodstream. It collects in the bones, especially abnormal areas, and is detected by a scanner. Bone scans can show cancer as well as benign bone diseases (like arthritis).
CT Scan (Computerized Tomography Scan, Computerized Axial Tomography (CAT) Scan)
A series of pictures created by a computer linked to an X-ray machine. The scan gives detailed internal images of the body.
Genomic testing
Analyzing DNA to check for gene mutations. Some use genomic testing to refer to genetic testing, which tests the DNA of a person. Others use it to refer to tumor profiling (gene expression profiling), which tests the DNA of a cancer.
H&E (Hematoxylin and Eosin) Staining
A laboratory test that gives color to cells so cell structures can be identified.
Immunohistochemistry (IHC)
A lab test done on tumor tissue to detect the amount of HER2 protein on the surface of the cancer cells.
Incisional Biopsy
Surgical biopsy that removes only part of the tumor.
Ki-67 Rate
A common way to measure proliferation rate. The more cells the Ki-67 antibody attaches to on a tissue sample, the more likely the tumor cells are to grow and divide rapidly.
Liquid Biopsy
A test that measures levels of circulating tumor cells or circulating tumor DNA in the blood. Although the term includes the word “biopsy,” these tests are not used for breast cancer diagnosis.
Liver Scan
An image of the liver that can show the presence or absence of a tumor.
Lymphoscintigraphy
An imaging method used to check the lymph system for diseases or conditions, such as lymphedema.
MRI (Magnetic Resonance Imaging)
An imaging technique that uses a magnet linked to a computer to make detailed pictures of organs or soft tissues in the body.
Pathologist
The physician who uses a microscope to study the breast tissue and lymph nodes removed during biopsy or surgery and determines whether or not the cells contain cancer.
Permanent Section
A preserved tissue sample for diagnosis. Thin slices of tissue are processed and put on a slide so that a pathologist can study them under a microscope. These sections are of better quality than frozen sections.
PET (Positron Emission Tomography)
A procedure where a short-term radioactive sugar is given through an IV so a scanner can show which parts of the body are consuming more sugar. Cancer cells tend to consume more sugar than normal cells do. PET is sometimes used as part of breast cancer diagnosis.
Punch Biopsy
Removal of a small circle of skin (with a special instrument called a punch or trephine) to be tested for cancer cells.
Sentinel Node Biopsy
The surgical removal and testing of the sentinel node(s) (first axillary node(s) in the underarm area filtering lymph fluid from the tumor site) to see if the node(s) contains cancer cells.
Stage of Cancer (Cancer Stage)
A way to indicate the extent of the cancer within the body. The most widely used staging method for breast cancer is the TNM system, which uses Tumor size, lymph Node status and the absence or presence of Metastases in addition to other factors to classify breast cancers.
Staging (Cancer Staging)
Doing tests to learn the extent of the cancer within the body (the cancer stage 0 to IV). Knowing the cancer stage helps determine what treatment is needed and how effective this treatment may be in getting rid of the cancer and prolonging life.
Stereotactic Needle Biopsy
Core needle biopsy done with the use of stereotactic (3-dimensional) mammography guidance.
Stereotactic Mammography
needle biopsy.
Tumor Grade
Describes how closely cancer cells look like normal cells. Grade 1 tumors have cells that are slow-growing and look the most like normal cells. Grade 3 tumors have cells that are fast-growing and look very abnormal. Grade 2 tumors fall in between grade 1 and grade 3.
Tumor Marker
A substance found in blood that may be a sign of metastatic breast cancer. Tumor markers are found in both normal cells and cancer cells, but they are made in larger amounts by cancer cells. A tumor marker may help indicate metastatic breast cancer treatment activity. The term tumor marker may also be used more broadly to refer to characteristics of tumor cells such as hormone receptors.
Tumor Profiling (Gene Expression Profiling, Molecular Profiling, Genomic Testing)
Tests that give information about thousands of genes in cancer cells. Specific genes (or combinations of genes) may give information useful in prognosis and in making treatment decisions.
Ultrasound (Sonogram)
Diagnostic test that uses sound waves to make images of tissues and organs. Tissues of different densities reflect sound waves differently.
X-Ray
Radiation that, at low levels, can be used to make images of the inside of the body. For example, a mammogram is an X-ray image of the breast. At high levels of radiation, X-rays can be used in cancer treatment.
INSURANCE TERMS
Co-Payment (Co-Insurance)
In an insurance plan, the portion of medical costs a person must pay (the portion not covered by his/her insurance policy).
Deductible (Insurance Deductible)
The pre-set amount of medical costs a person must pay before insurance payments begin.
Insurance Payment Cap
A maximum amount an insurance company will pay out in a given time period.
Insurance Premium (Premium)
The cost of insurance coverage for a certain period of time.
Out-of-Network Provider
Any health care provider or medical center (hospital or other treatment center) that is not part of a person’s group health plan or health maintenance organization (HMO).
Premium (Insurance Premium)
The cost of insurance coverage for a certain period of time.