Making Treatment Decisions for Myelodysplastic Syndromes

Learning that you’ve been diagnosed with cancer is a difficult and stressful event. It may take a number of days before you can begin to think clearly about this information. You may be inclined to do whatever the person delivering the news tells you to do. This may or may not be the best option for you. You will have numerous questions and concerns and should take time to think through your diagnosis and what kind of treatment fits you.

How should I make treatment decisions for MDS?

Treatment decisions for MDS should always be made in light of your age and health. Because MDS primarily affects the elderly, aggressive therapies or risky attempts to cure it are not always the best course of action. Instead, your priority might simply be to relieve your symptoms and prevent the condition from progressing, so that you can regain your quality of life. Some patients can live with and manage MDS without any reductions to their overall lifespan.

At Siteman, our physicians want you to make the treatment decisions that are best for you. They will be sure to listen to your concerns and answer your questions so you can make the most informed choices possible.

Siteman patients also have access to psychologists who will offer support free of charge. Call 314-747-5587 for more information.

Getting the information to make a decision

  1. Write down your questions and biggest fears and bring them with you when you visit your doctor.
  2. If there is something you do not understand, don’t be afraid to ask questions. Keep asking until you understand the answer. Otherwise, you can’t make the best possible choice for yourself.
  3. Bring a friend or family member when you visit your doctor. Because you will have a lot on your mind, a friend can help you remember what was said. Your friend also can take notes and remind you of questions to ask.
  4. Find other people who have had the same condition and talk to them about what was important to them about their treatment. Also realize that because we are all different, their outcome may not be your outcome for the same treatment.
  5. You may be at Siteman for a second opinion because the physicians here are at the top of their fields. Without a second opinion, you won’t know options you may have. One doctor may recommend less or more treatment than you think you need. Get as many opinions as you need to feel comfortable about your decision. You don’t have to decide today.
  6. Learn what you can about your cancer, but don’t over-study it. Just research the parts you need to know about now to make a decision. This will help you ask the right questions. When researching your cancer and treatment information on the Siteman website, make sure you have the right name and subtype of your cancer. Otherwise, you may be unnecessarily alarmed. Also, keep in mind that tumors that used to be deadly may now be much more manageable or curable.

Putting treatment into the context of your life and family

Palliative Care: Palliative care provides a specialized approach to medical care for people with serious illnesses, focusing on relief from symptoms of the illness and the treatment, and incorporating the patient and family members to improve the patient’s quality of life. Palliative care is provided by a specially-trained team of doctors, nurse practitioners, social workers and chaplains who work together with a patient’s surgical, radiation or medical oncologist to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and is provided along with curative treatment.

One of the biggest misconceptions is that palliative care means foregoing treatment and preparing for the end of your life. Its real goal is to help you manage your symptoms and treatment effects so you can tolerate the treatment better and have a better quality of life during treatment. The palliative physician, as a consultant to the doctors managing medical care, makes recommendations on extended pain management and any other support the patient or family needs. Palliative care takes the proposed treatment plan and looks at how it integrates into the family’s life, incorporating family status, socioeconomic issues, and spiritual needs in the plan of care. You can request a palliative care referral from your doctor.

Decisions to make about your treatment

Clinical trials: At any given time, Siteman Cancer Center has more than 350 clinical trials in progress. Patients with myelodysplastic syndromes who come to Siteman have access to novel or more advanced treatments than you could get in a community hospital. If your doctor feels a clinical trial is appropriate, he or she may suggest it. You can review the clinical trials currently in progress or ask your treatment team about appropriate trials available to you.

Having a bone marrow and stem cell transplant: One treatment option for several blood disorders, like MDS, is a stem cell transplant to replace the cancerous cells your body is producing with the healthy cells of a donor. It is an arduous procedure but may be effective for putting your cancer in remission. More information on the process can be found on the bone marrow transplant page.