It's Time...
You received your Cancer diagnosis and it's time for your first Oncology appointment. Remember everyone is different. The treatment that worked for someone else may not work fork for you. You may not have the same side effects as someone else. You won't know exactly how your body will respond to treatment until it happens. You can be prepared to ask questions, listen and learn basic terminology that are associated with the Cancer and or the treatment you will receive. We have included questions and a glossary below that my be helpful.
What To Bring To Your 1st Visit
First Oncology Appointment
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Medications
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Personal and family history
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Insurance and I.D. cards
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Referring physician information
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Bring someone with you if you can for support
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Have someone to listen in during your doctors visit (over the phone or face time)
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Notepad and a pen to take notes
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Phone or downloaded app to ask to record what doctor says Free APP- Called Abridge ( it also transcribes all that is being said)
Questions To Ask Your Doctor
• What specific type of cancer do I have?
• Where is the cancer located?
• Do you typically treat patients with my diagnosis?
• Has the cancer spread beyond where it started?
• What stage is my cancer?
• Is there anything unique about my cancer that makes my prognosis better or worse?
• Should I get a second opinion?
What to expect after treatment
• What happens after I complete my treatment?
• How can I best continue to monitor myself for complications related to either my disease or my treatment?
• What types of X-rays and scans will I need?
• How often do I need to come in for checkups?
Protecting against infection
• Am I at special risk for infection?
• What are the signs of infection?
• How long will I be at risk for infection?
Tests
• What types of lab tests will I need?
Side effects of treatment
• What possible side effects should I prepare for?
• When might they start?
• Will they get better or worse as my treatment goes along?
• How can I prepare for them or lessen their impact?
• Are there treatments that can help relieve the side effects? What are they? Do you usually recommend or prescribe them?
• Which risks are most serious?
Cancer treatment
• What is the goal of treatment?
• Can we cure my cancer or stop it from growing?
• What are my treatment options?
• What risks or potential side effects are associated with each treatment?
• Is there any information regarding clinical trials that are right for me?
• How long will I receive treatment, how often, and where?
• How will it be given?
• How will I know if the treatment is working?
• How and when will I be able to tell whether the treatment is working?
• Are there any resources or websites you recommend for more information?
Daily activities
• How will my cancer treatment affect my usual activities?
• Will I be able to work?
• Will I need to stay in the hospital?
• Will I need someone to help me at home?
• Are there any activities I should avoid during my treatment?
GLOSSARY
What is Cancer? Cancer is a disease that develops when cells grow, or divide, and form more cells without control or order. A group of more than 100 different diseases that can begin almost anywhere in the body, characterized by abnormal cell growth and the ability to invade nearby tissues.
Oncologist
A doctor who treats cancer and provides medical care for a person diagnosed with cancer. The five main types of oncologists are medical, surgical, radiation, gynecologic, and pediatric oncologists.
Patient Navigator
A person, often a nurse or social worker, who helps guide patients, survivors, families, and caregivers through the health care system. Navigators offer numerous services including arranging financial support, transportation, and childcare during treatment; coordinating care among several doctors; and providing emotional support.
Cancer Patient ReSource Navigator (located in Faith Based organizations for all in need)
Trained individual to help break down barriers to Cancer care so you can focus on your health and wellness. Navigate
Cancer patients, survivors and caregivers to free Cancer services, resources, spiritual support, financial assistance, childcare , free transportation, support groups, Prayer lines, second opinions, going back to school, scholarships for cancer survivor or they children, Cancer screenings, Cancer coaching, to Patient navigators in Cancer Centers and more.
What are Barriers to Cancer care
Problems or concerns that get in the way of you focusing on your health, Cancer treatment, survivorship or well being such as Financial barriers, lack of insurance, under insured, communication and information barriers, knowledge of medical system, fear, distrust and emotional barriers.
Social workers
Help people solve and cope with problems in their everyday lives.
Clinical social workers
also diagnose and treat mental, behavioral, and emotional issues.
Prognosis
Chance of recovery; a prediction of the outcome of a disease. Learn more about survival statistics used to estimate a patient’s prognosis.
Tumor
A mass formed when normal cells begin to change and grow uncontrollably. A tumor can be benign (noncancerous) or malignant (cancerous, meaning it can spread to other parts of the body). Also called a nodule or mass.
Benign
Refers to a tumor that is not cancerous. The tumor does not usually invade nearby tissue or spread to other parts of the body.
Pre-malignant
In these tumors, the cells are not yet cancerous, but they have the potential to become malignant.
Malignant
Malignant tumors are cancerous. The cells can grow and spread to other parts of the body.
Staging
A way of describing cancer, such as where it is located, whether or where it has spread, and whether it is affecting the functions of other organs in the body. Learn more about stages of cancer.
Mass
A lump in the body.
Polyp
A growth of normal tissue that usually sticks out from the lining of an organ, such as the colon.
Primary cancer
Describes the original cancer.
Precancerous
Refers to cells that have the potential to become cancerous. Also called pre-malignant.
Invasive cancer
Cancer that has spread outside the layer of tissue in which it started and has the potential to grow into other tissues or parts of the body, also called infiltrating cancer.
Localized cancer
Cancer that is confined to the area where it started and has not spread to other parts of the body.
Metastasis
The spread of cancer from the place where the cancer began to another part of the body. Cancer cells can break away from the primary tumor and travel through the blood or the lymphatic system to the lymph nodes, brain, lungs, bones, liver, or other organs.
Secondary cancer
Describes either a new primary cancer (a different type of cancer) that develops after treatment for the first type of cancer, or cancer that has spread to other parts of the body from the place where it started
Recurrence
Cancer that has returned after a period during which the cancer could not be detected. “Local recurrence” means that the cancer has come back to the same general area where the original cancer was located. “Regional recurrence” refers to cancer that has come back in the lymph nodes or other tissues near the original cancer site, usually by direct spread. “Distant recurrence” refers to cancer that has come back and has spread to other parts of the body, usually by traveling through the lymph system or bloodstream.
Treatment? Cancer treatment is the use of surgery, radiation, medications, and other therapies to cure cancer, shrink cancer or stop the progression of cancer. Depending on your particular situation, you may receive one treatment or you may receive a combination of treatments.
Treatment Summary
A written summary of the therapies that the patient had during the active treatment period. This is often used in conjunction with a survivorship care plan (see above) to help monitor a survivor’s long-term health.
Treatment for cancer depends on the following factors:
a. Type of cancer
b. Size, location, and stage of the disease
c. General health of the individual
Pathological staging
Is based on the same information as clinical staging, plus any new information gained during surgery if surgery was the first treatment for the cancer.
Post-therapy staging
Is used in cases where surgery is not the first treatment, but other treatments are given before surgery.
Tumor (T): The letter T and the number after it describe the tumor by answering these questions:
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How large is the primary tumor?
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Does it go into other tissues or organs in the same area?
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Where is it located?
The letter T is followed by a letter, number, or combination of letters after it. This gives additional information about the tumor. The different letters and numbers that may see include:
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TX means that there is no information about the tumor or it cannot be measured.
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T0 means that there is no evidence of a tumor.
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Tis refers to a tumor "in situ." This means that the tumor is only found in the cells where it started. It has not spread to any surrounding tissue.
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T1-T4 describe the size and location of the tumor, on a scale of 1 to 4. A larger tumor or a tumor that has grown deeper into nearby tissue will get a higher number.
Stage 0
This stage describes cancer in situ. In situ means "in place." Stage 0 cancers are still located in the place they started. They have not spread to nearby tissues. This stage of cancer is often curable. Surgery can usually remove the entire tumor.
Stage I
This stage is usually a cancer that has not grown deeply into nearby tissues. It also has not spread to the lymph nodes or other parts of the body. It is often called early-stage cancer.
Stage II and Stage III
In general, these 2 stages are cancers that have grown more deeply into nearby tissue. They may have also spread to lymph nodes but not to other parts of the body.
Stage IV.
This stage means that the cancer has spread to other organs or parts of the body. It may be also called advanced or metastatic cancer.
Node (N): The letter N and the number after it describe if cancer has affected the lymph nodes. The lymph nodes are small, bean-shaped organs that help fight infection.
Biopsy
The removal of a small amount of tissue for examination under a microscope. Other tests can suggest that cancer is present, but only a biopsy can make a definite diagnosis. Learn more about biopsy.
Surgery
The removal of cancerous tissue from the body through an operation.
Neoadjuvant therapy
Treatment given before the main treatment. It may include chemotherapy, radiation therapy, or hormone therapy given before surgery to shrink a tumor so that it is easier to remove.
Alternative medicine
A term that describes medical treatments that are used instead of traditional (mainstream) therapies. Some people also refer to it as “integrative,” or “complementary” medicine.
Immunotherapy
A type of cancer treatment designed to boost the body's natural defenses to fight the cancer. It uses materials made either by the body or in a laboratory to improve, target, or restore immune system function. It may also be called biologic therapy.
Targeted therapy
Treatment that targets specific genes, proteins, or other molecules that contribute to cancer growth and survival.
Laboratory test
A procedure that evaluates a sample of blood, urine, or other substance from the body to make a diagnosis, plan treatment, check whether treatment is working, or observe a disease over time.
Late effects
Side effects of cancer treatment that occur months or years after a diagnosis of cancer because of the related treatments, such as chemotherapy, radiation therapy, or surgery. Learn more about the long-term side effects of cancer treatment.
Imaging test
A procedure that creates pictures of internal body parts, tissues, or organs to make a diagnosis, plan treatment, find out whether treatment is working, or observe a disease over time.
What's MRI? Magnetic resonance imaging (MRI) is a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body. MRI helps doctors find cancer in the body and look for signs that it has spread.
Scans? Nuclear medicine scans can help doctors find tumors and see how much the cancer has spread in the body. They may also be used to decide if treatment is working. Some of the nuclear medicine scans most commonly used for cancer (described in more detail further on) are:
a. Bone scans: A bone scan is a test that can help doctors diagnose problems with your bones. It is a useful tool for finding cancer that has started in or spread to the bone.
b. PET: (positron emission tomography) scans: A positron emission tomography scan is known as a PET scan. PET scan is a type of test that may be used in cancer treatment.
c. MUGA: (multigated acquisition) scans: A multigated acquisition (MUGA) scan creates video images of the lower chambers of the heart to check whether they are pumping blood properly.
d. Gallium scans: A gallium scan identifies the cells that are dividing most quickly in your body. It can also help show cells that are rapidly reproducing or responding to an infection somewhere in your body.
e. CT: (computed tomography) scans: A computed tomography (CT) scan, also called a CAT scan, is an imaging test used to detect cancer and find out where it is located, if or where it has spread, and whether it is affecting other parts of the body.
Bone marrow
The soft, spongy tissue found in the center of large bones where blood cells are formed.
Bone marrow transplant
A medical procedure in which diseased bone marrow is replaced by healthy bone marrow from a volunteer donor. Learn more about bone marrow transplantation.
Blood testing may help reduce or detect cancer samples collected for cancer blood tests are analyzed in a lab for signs of cancer. Blood tests can also give your doctor an idea of how well your organs are functioning and if they've been affected by cancer.
Chemotherapy & radiation?
Chemotherapy is the use of drugs to destroy cancer cells. It usually works by keeping the cancer cells from growing, dividing, and making more cells. Because cancer cells usually grow and divide faster than normal cells, chemotherapy has more of an effect on cancer cells.
Radiation therapy is a type of cancer treatment that uses beams of intense energy to kill cancer cells. Radiation therapy uses high-energy particles or waves, such as x-rays, gamma rays, electron beams, or protons, to destroy or damage cancer cells.
Hormone therapy
Treatment that removes, blocks, or adds hormones to destroy or slow the growth of cancer cells. It is also called hormonal therapy or endocrine therapy.
Clinical trial
A research study that tests new treatments and/or prevention methods to find out whether they are safe, effective, and possibly better than the current standard of care (the best known treatment). Learn more about clinical trials.
Lifetime risk
The probability of developing a disease or dying from that disease across a person’s lifetime.
Predisposition
A tendency to develop a disease that can be triggered under certain conditions. For example, although a genetic predisposition to cancer increases a person's risk of developing cancer, it is not certain that the person will develop it.
Lymphatic system
A network of small vessels, ducts, and organs that carry fluid to and from the bloodstream and body tissues. Through the lymphatic system, cancer can spread to other parts of the body.
Cure
To fully restore health. This term is sometimes used when a person's cancer has not returned for at least five years after treatment. However, the concept of “cure” is difficult to apply to cancer because undetected cancer cells can sometimes remain in the body after treatment, causing the cancer to return later, called a recurrence. Recurrence after five years is still possible.
Mortality rate
The number of deaths in a particular population during a specific time.
Relative survival
The amount of time after treatment that a person with cancer lives, excluding all other causes of death but cancer.
Remission
The disappearance of the signs and symptoms of cancer but not necessarily the entire disease. The disappearance can be temporary or permanent.
Co-insurance
The percentage of health care costs an insured patient pays after meeting a health care plan's yearly deductible. For example, an 80/20 co-insurance rate means that the insurance company pays 80% of approved health care costs, and the patient pays the remaining 20% of costs out-of-pocket.
Co-pay
A set fee, in dollars, that an insurance provider requires a patient to pay each time care is received. For example, a visit to the oncologist may cost a patient $30 each time; the insurance provider pays the rest of the visit's costs. The amount of the co-pay is set by the insurance provider, not the doctor's office.
Pre-certification
The process of requesting approval from an insurance company for specific services before they happen, such as a treatment, procedure, or hospital stay; also called pre-approval. Many hospitals and clinics have precertification coordinators, patient navigators, or case managers who help patients with cancer through this process.
Follow-up care
Medical examinations and tests the doctor recommends after the active treatment period. This care is used to monitor a patient’s recovery and check for signs of recurrence.
Progression-free survival (PFS)
The length of time during and after treatment that the cancer does not grow or spread further.
Acute
Refers to symptoms that start and worsen quickly but do not last over a long time.
Screening
The process of checking whether a person has a disease or has an increased chance of developing a disease when the person has no symptoms.
Rehabilitation
Services and resources that help a person with cancer obtain the best physical, social, psychological, and work-related functioning during and after cancer treatment.
Palliative care
Palliative care is any form of treatment that concentrates on reducing a patient’s symptoms or treatment side effects, improving quality of life, and supporting patients and their families. It may also be called supportive care.
Power of attorney (POA), financial
A legal document that allows a person to select another person to act on their behalf on financial matters. Learn more about a power of attorney.
Survivorship
This term means different things to different people. Two common definitions include having no disease after the completion of treatment and the process of living with, through, and beyond cancer.
Health care proxy
A document that names someone you trust as your proxy, or agent, to express your wishes and make health care decisions for you if you are unable to speak for yourself. A health care proxy may also be called a durable medical power of attorney or an appointment of a health care agent or health care surrogate. Naming a proxy can help ensure that you get the health care you prefer in the event that you cannot communicate your wishes.
Advance directives
Written, legal instructions regarding your preferences for medical care if you are unable to make decisions for yourself. Advance care planning refers to a whole process including reflection on what’s important to you in terms of quality of life; learning about options, such as palliative and hospice care; and having honest discussions with others, as well creating an advance care directive.
Living will
A living will is a written document that helps you tell doctors how you want to be treated if you are dying or permanently unconscious and cannot make your own decisions about emergency treatment. In a living will, you can say which of the procedures described in the Decisions That Could Come Up section you would want, which ones you wouldn't want, and under which conditions each of your choices applies.
Durable power of attorney for health care
A durable power of attorney for health care is a legal document naming a health care proxy, someone to make medical decisions for you at times when you are unable to do so. Your proxy, also known as a representative, surrogate, or agent, should be familiar with your values and wishes.
POLST and MOLST
Forms that provide guidance about your medical care preferences in the form of a doctor's orders. Typically you create a POLST (Physician Orders for Life-Sustaining Treatment) or MOLST (Medical Orders for Life-Sustaining Treatment) critically ill and know the specific decisions that might need to be made on your behalf. These forms serve as a medical order in addition to your advance directive. They make it possible for you to provide guidance that health care professionals can act on immediately in an emergency.