Gathering Information and Support
Contact the Information Resource Center
Choosing Treatment Providers
Your Treatment Options
Clinical Trials
Complementary and Alternative (CAM) Therapies
Your Medical Records
Getting a Second Opinion
Changing Doctors
More Information For Parents
Healthcare Coverage
Gathering Information and Support
Adults who are living with leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS) or myeloproliferative disorders need to make decisions related to treatment, family, work or school, and finances. Parents of a child who has been diagnosed with leukemia or lymphoma need to make these decisions for their child.
You will be involved in decisions about
- The oncology practice, hospital or center where treatment will take place
- The specialist who will develop and coordinate the treatment plan and
- The type of treatment that will be provided.
You will need information to help you understand the diagnosis and treatment options that are being presented to you. Throughout treatment and survivorship there will be financial considerations and support issues.
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Contact the Information Resource Center
We can help right from the start or at any point in your process. Please call the Society's Information Resource Center (IRC) at (800) 955-4572 or email us at infocenter@LLS.org to get in touch with an information specialist. The IRC's information specialists are Masters' level social workers and health educators who provides current, disease-related information. Read more...
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Choosing Treatment Providers
It is important to get cancer care in a center or practice that specializes in treating the patient's disease. Some people choose a treatment facility first, while others choose the oncologist they want to be in charge of the treatment.
Adults with leukemia, lymphoma, myeloma, MDS or myeloproliferative disorders are usually treated by oncologists or hematologists. Infants, children and adolescents with cancer are treated by pediatric oncologists. Read more about choosing a specialist...
Patients may receive treatment as an in-patient or on an out-patient basis at cancer centers and hospitals. Where the treatment takes place depends on a number of factors. These include the patient's type of disease and treatment and may also depend on the patient's overall health and age. Read more about choosing a treatment facility ...
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Your Treatment Options
There are different types of leukemia, lymphoma, myeloma, MDS and myeloproliferative disorders. Treatment options vary, based on a patient's specific diagnosis, age, cytogenetic analysis, overall health and other factors.
Your treatment plan may include
Surgery can be, but is not usually, a part of treatment for cancers involving the blood and marrow.
See Disease Information for more more information about treatment for your disease. For more information about about treatments, diseases and support see Free Materials.
Click here for a printable question guide for discussing treatment options.
Click here for a printable question guide for discussing treatment side effects.
Click here for a printable question guide for discussing at-home medications.
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Clinical Trials
Advances in cancer treatment depend on clinical trials of new therapies or new combinations of therapies. A clinical trial can be designed to test new treatment(s) that improve response or quality of life for patients at any stage of treatment. In other words, clinical trials are not only for people with the most advanced disease. Read more....
Talk to your physician about whether treatment in a clinical trial is a good option for you. Click here for a printable question guide for discussing clinical trials with your oncologist.
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Complementary and Alternative (CAM) Therapies
Many cancer centers now offer integrative medicine (IM). IM uses CAM therapies that have been found to be safe and helpful. CAM is used with standard cancer care such as chemotherapy, radiation therapy and immunotherapy. CAM therapies include therapeutic massage, acupuncture, yoga, herbs, meditation, and music therapy, among others. It is important to talk openly with your oncologist about any CAM therapies you are currently using or considering using. Your oncology team can advise you about CAM therapies that are safe to incorporate with your treatment. Some CAM therapies have been studied and may help some people with treatment side effects (for example, nausea or fatigue). To date, there is no scientific evidence that any CAM therapies will slow cancer progression. Your physician can give you more information.
Click here for a printable question guide for questions to ask CAM therapy providers.
To view or print the Society's information about CAM therapies click here.
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Your Medical Records
It is a good idea to start a file of all your medical records and it's important to have your records sent to the consulting physician ahead of time if you are seeking another physician's opinion. Your file should include your initial diagnosis, pathology reports, test results and treatment recommendations. Patients are entitled to ask for and receive a copy of their medical records from a physician or hospital. (The originals must remain in the physician's or hospital's file.) A healthcare provider must have the patient's written authorization to disclose medical records or the information contained in them, so you will need to put your request in writing to the hospital or physician's office. Some healthcare providers have their own forms that needs to be completed. Physicians and hospitals may charge for copies of your medical reports, tests and x-rays or scan images.
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Getting a Second Opinion
Leukemia, lymphoma, myeloma and MDS are each different types of cancers. In addition, there are subclassifications within each type of disease. This means that the signs of the disease, how the disease is diagnosed and treated, and the expected outcomes for patients, vary. It is important to confirm a specific cancer diagnosis A person diagnosed with a blood cancer should ask his or her oncologist if the pathologist reviewing the blood and/or marrow test results is a hematology/oncology specialist. If not, he or she may want to consider having their test results reviewed by a pathologist who specializes in hematology/oncology.
A second opinion can help patients make treatment decisions. Insurance companies usually pay for second opinions and, in some cases, they require them. However, it is always a good idea to check whether your health plan will pay for a second opinion.
Click here for a printable question guide for discussing your second-opinion- consultation-health insurance coverage.
You can seek a second opinion at any time. To find a specialist for another opinion you may want to get:
• A referral from the primary care doctor community cancer center
• A list from the local medical society, a physician or health plan referral service
• Speak to family and friends
Ask the physician to send the your records to the oncologist who will be providing the second opinion. The patient (or legal guardian) needs to give written permission to the current physician to send any records or test results to another physician. The consulting oncologist can then examine these records before the patient's appointment.
If the second opinion you get is different than the first, ask each doctor why they had their opinions. Click here for a printable question guide for a second opinion consultation.
You may then want to get a third opinion to help you decide what to do. Or you may want to talk with your treatment team about what to do next.
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Changing Doctors
You have the right to change doctors. No doctor can promise you a cure. But there are many good doctors. If you want to change doctors, it is okay to tell your doctor. You do not have to give reasons if you do not want to. It is enough to say you are doing what is best for you.
More Information For Parents
For parents whose children are facing cancer treatment:
- Families face uncertainty when they are told that their child has leukemia or lymphoma. It is a time filled with new people and situations, worries and change. It may help to learn that cancer survival rates for children have improved significantly during the last several decades due to new and better treatments. Read more...
- Talk with your medical team about possible short-term and late effects of treatment. Follow-up medical care to monitor survivors for possible long-term or late effects is important. Parents should discuss possible long-term and late effects of treatment with their child's healthcare providers for the purposes of planning, evaluation and follow-up. Read more...
- Work with your medical team to communicate your child's needs to the school staff. If your child needs accommodations to succeed at school, ask for a meeting with a team that may include the principal, teachers, school counselor, school nurse, a treatment team member, and anyone you choose, such as a friend or family member. The team may suggest strategies that can be tried for a period of time (about 4 weeks). Read more...
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Healthcare Coverage
Serious illnesses may present healthcare coverage challenges. Read more...
Your healthcare plan may initially deny a recommended treatment. Patients may be able to get a decision overturned by filing an appeal if their insurance company denies payment for a recommended treatment. Courtesy, honoring deadlines for obtaining key documents and submitting all necessary paperwork are important elements in improving the likelihood of a successful appeal. Also, patients or their advocates should record the date and time of each call to the insurance company, and the name, phone number and extension of the insurance company representative who handles the call.
Click here for a printable question guide about talking to your health insurer about a denied claim.
The Society's Patient Financial Aid Program offers financial reimbursement for some medications, transportation and procedures for those in need.
The Society's 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.
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