Frequently Asked Questions
Below are some of the most frequently asked questions The Leukemia & Lymphoma Society (LLS) receives from patients, their family members, co-workers and friends. If you feel that you need further clarification or if your question has not been answered here, please contact our information specialists using the contact information to the right.
Click here for lists of suggested questions to ask your healthcare team. You can print these question guides to bring to your next appointment to help you ask questions and record your doctor's answers.
Who is the best doctor for my diagnosis?
Choosing a doctor can be a difficult and personal decision. LLS does not offer a list of doctors. The free LLS fact sheet "Choosing A Blood Cancer Specialist or Treatment Center" offers detailed information with links to tools that can assist you in making a choice. Factors to consider when choosing a doctor are listed below.
- Is the doctor an hematologist/oncologist with expertise in treating the specific blood cancer that is suspected or diagnosed?
- Is the doctor's affiliated hospital or treatment center accredited and experienced in the treatment of blood cancers?
- Is the doctor able to discuss all treatment options, for instance standard treatment, and when appropriate clinical trial options?
- Are the doctors's services and the treatment facility where the doctor practices covered by the patient's insurance plan?
- Is the patient comfortable with the style and level of communication with the doctor and their healthcare team?
- How often will the patient need to visit the doctor, and is transportation or the cost of transportation and housing an issue?
For more information visit our Making Treatment Decisions webpage.
How can I find the best treatment center?
Choosing a treatment center that matches your needs is important. Your choice may depend on the diagnosis, treatment (including participation in a clinical trial) and ability and willingness to travel. The decision about where to get treatment may be based on a recommendation from your doctor, your insurance carrier or by the geographic location of your home. Your choice could include a Comprehensive Cancer Center, a Community Clinical Oncology Program, a University Affiliated Hospital or Center or a Community Cancer Center. Each of these designations is used for a particular type of center with a variety of specific functions. Visit the Choosing a Specialist or Treatment Center webpage for more information.
What type of doctor specializes in leukemia, lymphoma, myeloma, myelodysplastic syndromes and myeloproliferative neoplasms (blood cancers)?
Doctors who specialize in the treatment of blood cancers are called hematologists/oncologists. They are trained in the management of blood-related disorders and specialize in oncology or cancer treatment. They will coordinate all of the care for a patient with blood cancers including ordering the treatments such as chemotherapy. If a stem cell transplant becomes necessary in treating the disease then the hematologist usually works directly with the transplant team.
How do I get my medical records from a doctor?
If you want to have a copy of your medical records, you must submit a written request to the hospital or doctor's office. A health care provider must have the patient's written authorization to disclose medical records or the information contained in them. Some hospitals have their own form that needs to be completed. Patients may receive copies of their medical records, however the originals must remain in the doctor's or hospital's file.
Here is more information about organizing your medical records.
What is Medicare Part D and how can I find out if I am eligible?
Medicare offers a variety of prescription drug plan coverage to enrollees for both brand-name and generic prescription drugs, administered by insurance and other private companies. Anyone with Medicare Part A and/or B can join. The plan is referred to as Medicare Part D. Patients must elect and enroll in a stand-alone prescription drug plan (PDP) or Medicare Advantage prescription drug (MA-PD) plan in order to receive the prescription drug benefit. Like other insurance, there is a monthly premium, a yearly deductible and co-payments for part of the cost of prescriptions. Those amounts - and the drugs they cover - will vary by plan.
Currently, patients who reach their coverage gap "donut hole" after they and their plan have spent a certain amount of money for covered drugs, have to pay all costs out of pocket (up to a limit). The Affordable Care Act will, over time, gradually decrease the amount patients will need to pay for prescriptions, once they fall within the "donut hole," from 100 percent to 25 percent by 2020. In 2011, patients who reach it will receive a 50 percent discount when buying Part D brand-name drugs. Over the next 10 years patients will receive additional savings on brand-name drugs as well as saving on generic drugs.
The Medicare program offers a "drug finder tool" that will help patients evaluate coverage of plans in their region. To find out more information on Medicare Part D, call the Centers for Medicare and Medicaid Services (CMS) at 1-800-MEDICARE or visit http://www.medicare.gov.
I'm on chemotherapy and do not know which side effects I need to call my physician about.
Side effects of treatment with chemotherapy agents are usually discussed with patients before the treatment is started. From the doctor?s perspective, the side effects of greatest concern may be fever, breathing difficulties, hives or rashes, rapid heartbeat, confusion, and redness or pain at the IV site. From the patient's perspective, any side effect causing discomfort or limiting usual activity such as diarrhea or nausea is a concern. Report any of these side effects when they first appear. Sometimes the more common side effects can be managed with medications to reduce discomfort. To find detailed side effect information about particular drugs, see the free LLS booklet Understanding Drug Therapy and Managing Side Effects.
What are clinical trials and how can I learn more about them?
Every new drug or treatment regimen goes through a series of studies called "clinical trials" before it becomes part of standard therapy. Clinical trials are carefully designed and rigorously reviewed by expert clinicians and researchers to ensure as much safety and scientific accuracy as possible. There are clinical trials that test and develop new and improved ways to diagnose and treat cancer in people, prevent or alleviate treatment side effects, help prevent a recurrence of cancer or improve the comfort and quality of life for people with cancer. Clinical trials are important for the treatment of leukemia, Hodgkin and non-Hodgkin lymphoma, myeloma, myelodyplastic syndromes or myeloproliferative neoplasms (blood cancers) because they provide promising new treatment options and offer the hope of increased survival and/or improved quality of life. Participation in a carefully conducted clinical trial may be the "best available" therapy.
A treatment that is proven safe and effective in a cancer clinical trial will often be approved by the US Food and Drug Administration (FDA) and become a standard treatment for future patients with cancer. A web-based clinical trial search service can be found on the LLS website. Visit our Clinical Trials webpage for more information.
"Facts, Statistics and Research"
Is leukemia (or lymphoma, myeloma) inherited?
No. There is little to no evidence that these diseases are inherited. There are genetic components to the diseases and often there are alterations in the DNA but the cause of these changes is unknown and occurs later in life.
What are the statistics for the survival of leukemia, lymphoma and myeloma?
Survival is measured in several ways so it is important to define each measure. The survival statistics are often presented as five-year survival, that is, the percentage of people who survive five years from the date of diagnosis. The five-year survival rates for the blood cancers (for all age groups) are: leukemia 56.5%; Hodgkin lymphoma 86.3%; non-Hodgkin lymphoma 69.5% and myeloma 41.1%. Leukemia rates by type of disease (for all age groups) are: ALL 66.6%; CLL 80.8%; AML 23.6% and CML is 55.2%. These figures differ for children ages 0-19 and people over 75.
How can I find out the latest research in treating my disease?
Usually people are looking for the most recent advances in applied or clinical research.
- The press often reveals these findings and disease outcomes in a news article.
- Check the News section of this website for updates on blood related cancers.
- Go to our Clinical Trials section for information on how new treatment options are developed and how to find out about current clinical trial options for your disease.
- Periodically ask members of your health care team for research updates on your disease and how they might or might not currently apply to the management of your disease. Do not hesitate to ask all members of the health care team including your family doctor. The hematologist/oncologist is often the best-informed person in the health care team regarding research advances.
What is a remission?
A remission is a complete disappearance of a disease, usually as a result of treatment. The terms "complete" or "partial" are used to modify the term "remission". Complete remission means all evidence of the disease is gone. Partial remission means the disease is markedly improved by treatment, but residual evidence of the disease is present.
What does "Watch and Wait" or "Watchful Waiting" mean?
Watchful waiting is an approach that is used to closely monitor a patient's condition without giving any treatment until symptoms appear or change. The doctor will monitor patients for disease progression and other signs and symptoms. It is usually recommended for patients in early stages of indolent or chronic forms of blood cancers.
"LLS Services and Support"
Does LLS offer any financial assistance?
LLS has a Co-Pay Assistance Program that offers financial support towards the cost of insurance co-payments and/or insurance premium costs for prescription drugs. Patients must qualify both medically and financially for this program. LLS also has a Patient Financial Aid program that provides supplementary financial assistance to patients in need. The program is supported entirely by public contributions. To apply for the program, simply contact your local chapter (enter your zip code at the top of this page to find your local chapter) or complete and return the financial aid application to your local chapter.
What services does LLS provide?
LLS offers many free services for patient and families through its National office and chapters across the United States and Canada, including its information specialists and this website. Visit the Get Information and Support section to find resources like:
- Patient Education Programs - for patients, survivors, families and friends
- Local support groups and online chats - for patients survivors and caregivers
- Patti Robinson Kaufmann First Connection Program - a telephone support program linking you with a trained peer volunteer who has experienced a similar situation
- Co-Pay Assistance Program - offers financial support towards the cost of insurance co-payments and/or insurance premium costs for prescription drugs. Patients must qualify both medically and financially for this program.
- Patient Financial Aid Program - provides supplementary financial assistance to patients in need
Does LLS offer services for patients living outside of the United States?
LLS features disease information and select professional and patient education programs globally via this website. Users may also speak with others coping with blood-related cancers by joining our Blood Cancer Discussion Boards. Additionally visitors may visit The Leukemia & Lymphoma Society of Canada's website which services both English- and French-speaking Canadians.
The LLS Patient Financial Aid Program, Family Support Groups and First Connection Program are available only for people residing in the United States.
The Leukemia & Lymphoma Society cannot financially assist persons wishing to travel to the United States for treatment. The St. Jude Children's Research Hospital in Memphis, Tennessee will provide free services to children from outside the United States if they are previously untreated and/or currently are eligible for one of St. Jude's Clinical Trial programs.
The National Cancer Institute provides a list of international cancer information services that provide information and referral for patients and families and a list of other international organizations dedicated to cancer research and treatment.