Before Starting Treatment

by Ellen Suen, M.S., LRFA Director of Patient Services

Article from: Lymphoma Update Newsletter, Winter 2000, Volume 6 Number 4

While the initiation of treatment provides hope, it can also be a time of tremendous stress. Knowing what to expect and being able to prepare for the changes that will affect your life will help you gain some control and peace of mind at a time when you might be feeling anxious and overwhelmed. Below are some helpful points to consider prior to initiating treatment for your lymphoma.

Obtain information about your treatment. For some people, a lake of information about their treatment can cause fear and anxiety. Understanding the therapy and knowing what to expect may help to ease your worries and prepare others to help you through this treatment period. Establish and open and honest dialogue with your physician and nurse regarding what the prescribed treatment regimen is, how it works, what tests are involved and what side effects and complications may be associated with it. Asking questions as often as needed will help your doctors and nurses fully address your concerns. If the amount of information becomes overwhelming, ask a family member or friend to help you sort through it and to accompany you to advocate on your behalf during office or hospital visits.

Obtain information about possible side effects of treatment. Ask your physician or nurse about the probability of various side effects or complications of treatment and what medication is available before, during and after treatment to alleviate or lessen them. Also, ask about suggestions on how to manage and cope with potential side effects.

Talk to someone who has gone through it. Many patients find it extremely valuable to hear about the experiences of another patient who has been through the same treatment and who may have had similar concerns. Although each person is different and each response to therapy is unique, knowing someone who has successfully completed the same treatment regimen can be a source of great comfort. Contact LRFA to participate in “Cell-Mates,” the Foundation’s peer support program that matches patients based on type of lymphoma, treatment histories and similar interests to share experiences and offer emotional support and encouragement.

Know who will be on your treatment team. During the course of your treatment there may be several different medical personally administering your care. You might fin dit helpful to know ahead of time who these people will be and the role they will play in your treatment. Each member of your treatment team specializes in a particular aspect of your regimen and works closely together to give you the best medical care. Below is a list of possible treatment team specialists. Your team will depend on the type of therapy you will receive.

Medical Oncologist – A doctor who specializes in the causes, diagnosis and treatment of cancer.
Hematologist/Oncologist – A doctor who specializes in the causes, diagnosis and treatment of cancers of the blood and lymph system, such as lymphoma, leukemia and myeloma.
Radiation Oncologist – A doctor who specialized in treating and managing cancer with radiation.
Nuclear Medicine Physician – A doctor who specializes in interpreting and administrating diagnostic tests and therapy modalities that use radioactive materials.
Radiologist – A doctor trained in taking and interpreting X-ray and other high-energy photos of the inside of your body.
Pain Specialist – A doctor trained to evaluate the patient’s need for prescription pain medication and to order it.
Nurse – A trained medical professional who will coordinate the various components of your treatment, help you learn about your treatment and possible related side effects and assist you in managing those side effects. You may have one or more nurses trained in a particular area of care depending on your treatment, such as a chemotherapy nurse, a bone marrow transplant nurse, etc.
Pharmacist – A licensed professional trained to prepare and dispense prescription medication.
Nuclear Medicine Technologist – A trained professional who measures, prepares and administers radioactive materials in diagnosing and treating disease.
Radiation Technician – A trained professional who operates the equipment delivering the radiation.
X-ray Technician – A trained professional who operates the equipment that allows an X-ray photo to be taken.
Oncology Social Worker – A licensed professional who provides cancer-related social services, support and referrals to financial resources.

Have dental work performed before treatment begins. It is important to see you dentist for a complete checkup and to take care of any needed dental work prior to your lymphoma treatment. Your teeth should be in their best possible condition since treatments such as head and neck radiation can increase the likelihood of developing cavities in your teeth. Some of the side effects experienced during treatment, such as mouth sores and a decreased ability to fight off infection, can make it painful and undesirable for dental work to be performed during or soon after treatment. Additionally, dental work performed at this time should be avoided to prevent cuts in the mouth that can lead to infection.

Consider Fertility issues prior to beginning treatment. Lymphoma treatments consisting of chemotherapy and/or radiation can affects one’s ability to have children to the future. Consult with a specialist who can explain the effects of treatment on fertility and learn about your options on bank sperm or eggs for future use before starting therapy.

Take steps to cope with possible hair loss. While hair loss, or alopecia, is a temporary side effect of certain therapies, for some patients, losing one’s hair can be upsetting and stressful. If you particular treatment can cause hair loss, consider cutting your hair short to make future hair loss less noticeable. Purchasing a wig before you lose your air will make it easier to match your hair color to that of the wig.

Review medical insurance policies and consider related financial issues. Understanding the costs involved with your treatment and what your financial obligations will be can make it easier to plan to meet these obligations. Speak with your doctor or hospital staff about the costs associated with the different aspects of your treatment, such as lab tests, medications, hospital stays, etc. Find out which costs will be covered by your health insurance carrier, medicare, MediCal, or other resources available to you. Consider the financial impact of taking time off from work and discuss with your employer the possibility of flexible work arrangements.

There are organizations, programs and books that can help you learn about treatment-related financial issues, insurance issues, employment-based financial issues, federal and state assistance programs, disability income and other financial resources. Consult LRFA’s Lymphoma Resource Guide or contract the Foundation for more information.