When you have been diagnosed with a disease that may be treated with a bone marrow or umbilical cord blood transplant (also called a BMT), it is important to discuss options with your doctor. Talking openly can help you and your doctor make better choices about your health care.
Your doctor will explain the treatment options he or she feels are best for you. You need to ask your doctor questions so you understand your doctor's recommendations. You also need to let your doctor know your concerns and what you want from your treatment.
Preparing ahead of time
Before your doctor's appointments, make a list of questions you would like to ask your doctor. Give a copy of your questions to your doctor so he or she can answer each one with you.
Gather information from books, the Internet or other sources. Tell your doctor where you got your information and ask for his or her view of it.
If you have a lot to talk about, let your doctor know ahead of time. For your first appointment, your doctor may have an hour to spend with you, but later appointments may last only fifteen minutes. You may need to make a separate appointment to be sure your doctor has scheduled enough time to talk to you. You may also want to bring along a family member or friend. This person can take notes and help you remember what was said.
You can find a lot of information on this website that may help you talk with your doctor, including:
- Information on many diseases that may be treated with transplant
- Information on treatment options
- MatchView® — an online resource you can use to view the number of potential donors and cord blood units you may have on the Be The Match Registry®
Questions to ask about treatment options
When you discuss treatment options with your doctor, some questions you may want to ask include:
- What treatment do you recommend and why?
- What is the goal of this treatment? (A cure? A long-term remission — if so, how long? To control my symptoms?)
- How many patients have you treated who have the same disease as I do?
- Are there other possible treatments that might be options for me?
- What do you think the chances are the recommended treatment will get rid of my disease — for the short term and the long term?
- What are the possible risks and side effects of the treatment?
- Will I be able to continue to work while I am being treated?
- What activities will I need to avoid during treatment?
- How long will the treatment last?
- How will you know whether the treatment is working?
- What choices do I have if the treatment does not work?
You can print this list of treatment options questions (PDF) and add your own to it. Keep asking questions until you understand as much as you need to know. Find out whether you can call or e-mail your doctor if you think of more questions later.
Questions about transplant
If a bone marrow or cord blood transplant is a treatment option, the questions above may be useful. You may also have some questions specific to transplants. Answers to some of your questions about transplants may be available on this website — try the Patient FAQs as a starting point.
For questions about your own situation, you will need to talk to your doctor. Your regular doctor may be able to answer some questions. Other questions may be better answered by a transplant doctor. If transplant is an option for you, your doctor will refer you to a transplant doctor for a consultation. Some questions you might ask about transplant include:
- Do you recommend an autologous transplant (which uses the patient's own cells) or an allogeneic transplant (which uses cells from a family member, unrelated donor or cord blood unit)? Why?
- When do you recommend a transplant? What are the risks of waiting or trying other treatments first?
- If an allogeneic transplant is recommended:
- How long will I be in the hospital?
- What do you think the chances are that my transplant will be successful?
- Is there anything about my health or disease that makes my transplant more risky?
- What are the possible complications in the first few months, first year and over the long term?
- What steps will you take to try to prevent these complications and how will you treat them if they occur?
You probably will have more questions of your own. You can print this list of transplant questions (PDF) and add your own to it. You may also have questions about choosing a transplant center or planning for the costs of a transplant.
Resources for your doctor
You may want more in-depth information to help you talk with your doctor. Your doctor may want more information as well. You can find information to share with your doctor in the Physician Resources section of this Web site: