Making your decision about treatment

Your doctors use national treatment guidelines to help decide the most suitable treatment for you. A donor stem cell transplant is a specialised treatment. It may increase the chance of curing your cancer or leukaemia, or getting you into remission. But you will need to weigh this against the risks.

The main risks include:

  • serious infections and bleeding
  • graft-versus-host disease (GvHD)
  • graft failure (the donor stem cells don’t produce new blood cells).

You may have many questions about the transplant. You’ll be able to discuss these with your specialist. It’s important to have all the information you need about the benefits, risks and possible side effects. This will help you make a decision. Your specialist may also give you information about taking part in a research trial.

If you want a second opinion about having a transplant, ask your specialist to refer you. Take some time to make your decision. You may also want to talk to family, friends or your specialist nurse.

Making a decision

You will need to think about the benefits and risks of this treatment very carefully before deciding to go ahead with it. A donor stem cell transplant may increase the chance of curing your cancer or leukaemia, or of getting you into remission, more than any other treatment. But, you will need to weigh this against the risks.

There have been many improvements in looking after people after a transplant but some people still have serious side effects or may die. Your specialist will talk to you about this. While this information can be upsetting to hear, your specialist needs to make sure that you’re fully aware of all the risks.

You’ll need some time to think about your decision, and you may want to talk things over with your family and friends. Most units have a nurse specialist, transplant coordinator, social worker or counsellor who you can talk to. It’s a good idea to have someone with you when talking to the hospital team. They can support you and help you with the information you've been given. You don’t need to rush into making a decision about having a transplant.

If you have questions, ask your hospital team. It’s important to have all the information you need before making your decision.

You can also choose not to have the treatment. The staff can explain what may happen if you don’t have it. It’s essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You don’t have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice.

Risks involved with a donor stem cell transplant

A donor stem cell transplant is a very specialised treatment. It can have many side effects and possible complications. Your doctor will consider your general health before advising you to have a transplant. There are likely to be times when you feel very unwell. It can take many months to fully recover, and some people may not get back to the same level of health they had before their transplant. The main risks include:

  • serious infections and bleeding when your blood counts are very low
  • graft-versus-host disease (GvHD) – if the donor’s cells attack some of your body’s tissues and organs
  • the donor stem cells may not produce new blood cells (graft failure).

Your doctor can tell you more about what these side effects may mean for you.

Questions you might like to ask your doctor

  • What are the benefits of a donor stem cell transplant for me?
  • What are the risks?
  • What are the possible long-term side effects?
  • How will it affect the way I live?
  • Will I still be able to have children after the treatment?
  • How long will it be before I get back to my daily routine?
  • What happens if the cancer comes back after my transplant?
  • What may happen if I decide not to have the transplant?
  • What other treatments can I have?
  • Do I need the transplant now or could I have it later if my disease comes back?

Getting a second opinion

Your multidisciplinary team (MDT) uses national treatment guidelines to decide the most suitable treatment for you. Even so, you may want another medical opinion. You might decide to do this if you’re concerned about the treatment that has been recommended for you. If you want a second opinion, you can ask your specialist to refer you for one. You can have a second opinion through the NHS so you don’t have to pay, or you can choose to have one privately. You’ll need to go to a different hospital for a second opinion. You may have to travel some distance as only specialist units carry out transplants.

If you do go for a second opinion, it may be a good idea to take a relative or friend with you and have a list of questions ready. This can help make sure your concerns are covered during the discussion.

Giving your consent

If you decide to have the transplant, you will need to give permission (consent). Your doctor will ask you to sign a form saying that you give consent for the hospital staff to give you the treatment. No medical treatment can be given without your consent. You will also have to give consent for your information to be shared between members of the healthcare teams.

Research trials

Research trials or studies can be used to get information about new and better ways of carrying out transplants. Areas of research in transplants include looking at:

  • the best forms of conditioning treatment
  • ways of preventing GvHD
  • ways to speed up bone marrow recovery time.

Trials and studies are the only reliable way to find out whether a different type of treatment is better than what is already available.

Taking part in a research trial

Many transplant studies involve hospitals across the UK and other countries. You may be asked if you would like to take part in one. You’ll be carefully monitored during and after the study. If you decide not to take part, your decision will be respected and you don’t have to give a reason. There will be no change in the way you’re treated by the hospital staff, and you’ll be offered the standard treatment for your situation.

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