Frequently Asked Questions
Below are some of the most frequently asked questions that 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.
"What to Ask" Question Guides
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.
What type of doctor specializes in blood cancers (leukemia, lymphoma, myeloma, myelodysplastic syndromes and myeloproliferative neoplasms)?
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 (cancer) treatment. They, or someone on their team, will coordinate all of the care for a patient with blood cancer, including ordering the treatments. If a stem cell transplant becomes necessary in treating the disease, the hematologist usually works directly with the transplant team.
Who is the best doctor and how can I find the best treatment center for my diagnosis?
Choosing a doctor can be a difficult and personal decision. LLS does not offer a list of doctors but 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.
For more information, visit our Making Treatment Decisions and Choosing a Specialist or Treatment Center webpages. You may also want to access the "What to Ask" question guides at the top of this page.
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 healthcare 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.
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 coverage plans to enrollees, for both brand-name and generic prescription drugs, which are 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 plan (MA-PD) 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.
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.
Which side effects do I need to call my doctor about?
Side effects of treatment 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 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 Side Effects of Drug Therapy.
What are clinical trials and how can I learn more about them?
A clinical trial is a research study conducted by doctors. A treatment or drug must be studied in clinical trials before it can be considered for approval by the US Food and Drug Administration (FDA). The aim of a cancer clinical trial is to
- Study a new drug or a new use for an approved drug
- Compare a new treatment with a standard treatment to find out which one works better and/or has fewer side effects.
Every clinical trial has a precise treatment plan called a "protocol," which must be followed. Patients get a lot of attention and receive excellent cancer care. Clinical trials may be offered at community hospitals, cancer centers and doctors' offices around the country
A treatment that is proven safe and effective in a cancer clinical trial will often be approved by the FDA and become a standard treatment for future patients with cancer. A web-based clinical trial search service can be found on our Clinical Trials webpage, or by calling an LLS Information Specialist at 1-800-955-4572.
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 explain 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?
This 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 often recommended for patients in early stages of indolent or chronic forms of blood cancers.
"Facts, Statistics and Research"
Are blood cancers 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.
What are the survival statistics for blood cancers?
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. For survival statistics, access our annual Facts publication.
How can I find out about 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 webpage 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 healthcare 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.
"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. Visit our Financial Matters webpage for more information about financial assistance resources.
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 our Information Specialists and this website. Visit the Get Information and Support and Resource Center sections to find resources such as:
- Patient education programs
- Free education publications
- Local support groups
- Online discussion boards and online chats
- Patti Robinson Kaufmann First Connection Program
- Co-Pay Assistance Program
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 cancers by joining our Blood Cancer Discussion Boards and Online Chats. Additionally, visitors may visit The Leukemia & Lymphoma Society's Espanol website for information in Spanish, or The Leukemia & Lymphoma Society of Canada's website, which services both English- and French-speaking Canadians.
The LLS Co-Pay Assistance 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.