Cancer Support Community
“So that No One Faces Cancer Alone”
734 15th Street NW | Suite 300
Washington, DC 20005
Phone: 1-202-659-9709
Toll-free: 1-888-793-9355
Fax: 1-202-974-7999
[email protected]
Cancer Support Community is a 501(c)3 charitable organization.
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Gather the facts and write them down in a notebook. Ask questions like:
In most cases, you have time to make decisions about your care and treatment. This will allow you time to do more research, get a second opinion and even consult with a decision counseling expert to discuss your options and personal goals and wishes.
Every patient has a right to a second –or even third opinion, and your doctor should support your desire to do so. Oftentimes people seek a second opinion from a doctor in a different cancer center or academic medical center in order to explore all care options and to see if there is any new science they should know about.
Many people don’t realize that a clinical trial can be explored at the point of diagnosis and may be a possible treatment option early on. Here are three common myths about cancer clinical trials:
MYTH: I will get a placebo or sugar pill in a cancer treatment trial.
FACT: You will get the standard of care OR the standard of care plus the new medicine
Being studied. Cancer clinical trials rarely use a placebo unless there is no existing standard of care.
MYTH: You should only consider a clinical trial as a “last ditch effort” when all other treatments have not worked.
FACT: Clinical trials are available for many different cancers at many different stages of disease. Ask about trials early on in your diagnosis. It may be that if you start a treatment and then discover a trial later on, you may not qualify for the trial since you have already started treatment.
MYTH: I will not get good medical care in a clinical trial – I will be a guinea pig.
FACT: People in clinical trials report getting excellent care and medical attention.In addition, many people feel as if they are giving back by helping to advance the science.
Most people say you don’t really know how good your coverage is until you have to deal with a serious health issue. Ask if there is a financial counselor or social worker who can help you find out how much of your doctor and hospital bills, surgery, cancer treatment and other medications and supportive care will be covered under your plan. Ask about co-pays, deductibles and other costs you may have to pay.
Make sure all of the health care professionals and the locations of care are considered in your network or that you understand what it means to be treated out of network.
Please know that a diagnosis of cancer can raise many personal issues including feeling depressed, anxious, and scared or confused.
These feelings are normal and are experienced by many people diagnosed with cancer. A brief distress questionnaire and a discussion with a professional such as a social worker or navigator can help you with your concerns and connect you to helpful resources and support.
Whether you are looking for information on how to talk to your kids, challenges at work, information about financial and insurance concerns, or are just looking for someone to talk to about the stress cancer has brought into your life, help is available.
We are doing a better job than ever before of treating cancer in the United States. There are many new treatment options for different cancers and new treatments that do a better job of targeting the disease to create a personalized cancer care plan for you. Ask your doctor about targeted therapy, immunotherapy and other new treatments that may be right for you.
Each individual is unique; each person’s cancer is different. You are the expert in your cancer experience. Together, you and your health care team can work to get the best care for you. Knowing who is on your team will make it easier to efficiently manage your treatment and find resources you need.
Medical oncologist: These doctors are specially trained to diagnose and treat cancer and specialize in the use of chemotherapy and other drugs to treat cancer.
Nurses: You will have the most direct contact with your nurses. Oncology nurses, radiation therapy nurses and oncology nurse practitioners have special training in caring for people with cancer. Nurse practitioners can prescribe medications and diagnose illnesses. Your nurses will be able to answer many of your questions, give medicine, and provide emotional support. They are also usually in charge of implementing the treatment plan your doctor has set up for you.
Surgeon: These doctors perform biopsies (cells or tissues are removed from the body and examined to help with a diagnosis) and surgeries.
Surgical oncologist: These surgeons specialize in treating cancer.
Pathologist: These physicians examine biopsy and tumor tissue and are responsible for the accuracy of laboratory tests. They will provide you and your doctors with information about your tumor that will be used to determine how it will be treated.
Radiologist: These doctors read and interprets x-rays, ultrasounds, CT scans, MRIs and other imaging tests. This member of your team may also perform biopsies during special x-rays or ultrasounds.
Radiation oncologist: These radiologists specialize in the treatment of cancer using radiation.
Dosimetrist: The person will use the radiation oncologist’s prescribed dose of radiation for your tumor to calculate and plan your radiation treatment.
Radiation therapist: The person who will deliver your radiation therapy.
Medical physicist: The person who will be responsible for ensuring your receive the exact dose of radiation prescribed by the radiation oncologist.
Family Doctor or general practitioner: The doctor who provides primary health care for you and your family.
Social worker: A person trained to identify social and emotional needs and provide services necessary to meet them. A social worker can help you and your family find resources to cope with cancer and its treatment.
Pharmacist: The doctor who will prepare and dispense your medications. She or he will be able to explain to you how your medications work.
Psychiatrist and psychologist: Mental health specialists who can help you and your family understand, manage, and cope with feelings, thoughts, worries, and behaviors. Psychiatrists have a medical degree and have the ability to prescribe medication.
Registered dietitian: A person who can help you maintain a healthy diet and get proper nutrition during your treatment and recovery.
Plastic surgeon: The doctor who specializes in cosmetic and/or reconstructive surgery.
Rehabilitation specialist: A person who specializes in helping patients maintain or regain their ability to perform daily activities. Depending on the type of cancer you have, you may see a physical therapist, occupational therapist, counselor, or speech therapist during and after your cancer treatment.
Home health aide: An aide can help you move around or with bathing. She or he may also cook or do some household chores.
Hospice care providers: These individuals provide specialized care to meet the needs of people who have terminal or end-stage cancer. This type of care focuses on providing physical comfort, reducing pain, and giving emotional or spiritual support.
Clergy: Chaplains conduct religious worship and perform other spiritual functions associated with beliefs and religion. Many people find prayer and spiritual counseling can be help them cope with cancer.
Non-Hodgkin lymphoma (NHL) is one of the most common cancers in the United States, accounting for about 4 percent of all cancer cases. More than 95 percent of cases occur in adults but certain types are common among children. NHL is the name of a group of blood cancers that develop in the white blood cells (lymphocytes). There are approximately 60 different subtypes of NHL. Most subtypes fall within two main groups, named for the cell where the lymphoma originates: B-cell lymphomas or T-cell lymphomas. NHL can be either indolent (slow growing) or aggressive (fast growing).
Risk factors are characteristics or exposures of an individual that can increase the likelihood of developing a disease. Certain cancer risk factors, such as smoking, can be changed.
Other cancer risk factors, such as a person’s age or family history, cannot be. Having one or even many risk factors does not mean that a person will definitely get the disease, and many people who are diagnosed with non-Hodgkin lymphoma have few if any risk factors.
The following are risk factors that have been associated with non-Hodgkin lymphoma (NHL):
Age
Although people of any age can be diagnosed with NHL, people are often diagnosed when they are 60 or older.
Gender
NHL occurs more frequently in men than women, but there are certain types of NHL more common in women. Reasons for this are not known.
Geography
NHL is more common in North America and northern Europe, and least common in Asian countries. Worldwide, NHL is more common in developed countries.
Race and Ethnicity
In the United States, whites are more prone to developing NHL than African Americans or Asian Americans/Pacific Islanders.
Radiation Exposure
Exposure to atomic bombs and nuclear reactor accidents can increase your risk of developing a number of cancers, including NHL, leukemia, and thyroid cancers. People treated with radiation therapy for certain cancers also have a slightly increased risk of developing NHL.
Chemical Exposure
Exposure to chemicals such as benzene, certain herbicides (weed killers) and insecticides (insect killers) may be linked to an increased risk of NHL. In addition, chemotherapy drugs used in the treatment of other cancers may increase the risk of developing NHL. It is not clear whether the association between chemotherapy drugs and the development of NHL is related to the original cancer itself or a side effect of treatment.
Doctors are able to diagnose lymphomas based on how they look under a microscope, the chromosome features of the lymphoma cells, and the presence of certain chemicals on the surface of the cells. In order to make an accurate diagnosis, your doctor will perform a physical exam, and may order blood tests, biopsies, and imaging tests to confirm the exact type and stage of your disease. Sometimes, non-Hodgkin lymphomas may be difficult to diagnose. Consult with your doctor to ensure that accurate testing is completed to receive the right treatment for you.
In order to diagnose NHL, your doctor will order several tests, including a physical exam, blood tests, biopsies, and imaging tests to confirm the exact type and stage of your disease. This will help the doctor determine the best treatment options for you. Two kinds of biopsies are used to diagnose NHL:
If a biopsy confirms an NHL diagnosis, your doctor may recommend additional tests to find out how far the disease has spread. These other tests could include a chest x-ray, CT scan, MRI, PET scan, or blood tests. NHL can be difficult to diagnose and may require multiple tests.
Your doctor will recommend treatment options based on the stage of your NHL, your overall health and your treatment preferences. In all cases, treatment should be individualized for you.
If your disease is diagnosed early, categorized as an indolent (slow growing), and you have no symptoms, your doctor may recommend a watch and wait approach. This means your doctor may not recommend any treatment at the time of diagnosis.
If immediate treatment is required, there are a number of options. It may be helpful to create a treatment plan to address the short- and long-term goals of managing your cancer. Talk through the options with your doctors in order to develop a treatment plan that is right for you. It is okay to seek a second opinion to discuss your diagnosis or treatment options.
When you talk with your doctors, ask questions if you do not understand any aspect of treatment or the medical terms they are using. One of the best ways to improve communication with your health care team is to prepare questions before your visits. It is also helpful to write down notes when your doctor talks so you can remember what was said. You may want to bring a friend or family member to take notes for you.
Learn More About Treatment Options and Side Effect Management
When you have a cancer diagnosis, it is normal to feel frightened, sad and worried. People who have had cancer often talk about experiencing three feelings: loss of control, unwanted aloneness and loss of hope.
Here you’ll find helpful information, resources and support services to help you when you have a cancer diagnosis. The resources, tips and guides listed in this section can help you gain a sense of control as you face decisions about your treatment and care. We can help you navigate the health care system so you can manage the tests, doctor’s appointments, and insurance issues.
Here at the Cancer Support Community you can find that you are not alone, regain a sense of control, and learn there is always hope.
The next few weeks will be a busy time, as you face decisions about your treatment and care. Navigating the health care system – the tests, doctor’s appointments, figuring out insurance and more – can feel overwhelming. But, it is ok to ask for help.
One of the first things to do is think about who in your life is a helping presence. It might be your spouse or partner, friends, faith community, support group or co-workers. Make a list of specific ways they can help.
If you are unsure of what to ask people to do, below are some questions to consider:
People on your health care team, particularly a nurse or social worker, can help you find resources for social, emotional and practical support.
An important decision you will make about your cancer treatment is choosing a doctor, a team and a cancer center that has the expertise to treat your cancer.
As you learn about your cancer diagnosis and treatment options, ask your doctor how soon you need to make a treatment decision. You may seek a second or even third opinion. Being able to talk openly and feel comfortable with your doctor, nurse, social worker, and other office or health care team staff is important. Here are some questions to consider asking as you choose your team:
About your cancer diagnosis:
About your cancer treatment:
It is ok to ask any questions you have. You have the right to understand medical terms and cancer treatment options. You have the right to make choices about your treatment and care, even if the opinion of your doctor is different.
Talking about how you feel—and what you do or do not understand—helps both you and your doctor take care of your health. Your visits can go by quickly. Here are some suggestions to help before, during and after:
If prostate cancer is diagnosed, the doctor needs to determine the stage, or extent, of the cancer to plan the best treatment. Staging is used to find out whether the cancer has spread, and if so, to which parts of the body.
As part of the staging process, a pathologist will assign a score to the prostate cancer based on how the cancer cells look under a microscope. Pathologists score prostate cancer according to the Gleason grade. The Gleason score indicates how aggressive the prostate cancer appears to be. A higher number means that the cancer is more aggressive and likely to spread. The Gleason score is determined by adding the two most common grades seen in a sample by the pathologist. Grades range from 3 (least aggressive) to 5 (most aggressive) and scores range from 6 (least aggressive) to 10 (most aggressive).
