Making your decision about treatment

A donor stem cell transplant is a specialised treatment that may be used for certain cancers or leukaemia. It may increase the chance of curing you or of getting you into remission. You will need to weigh this against the possible risks.

The main risks include:

  • serious infections and bleeding
  • graft-versus-host disease (when the donor cells attack some of your body’s tissues)
  • graft failure (the donor stem cells do not produce new blood cells).

Most people who have a donor stem cell transplant are no longer able to have children afterwards. If this is a concern for you tell your specialist doctor or nurse. They may be able to refer you to a fertility specialist before treatment starts.

It is important to have all the information you need about the benefits, risks and possible side effects. This helps you to think about questions you want to ask your transplant team. You may also want to talk to family and friends before you make your decision.

Making your decision

You will need to think about the benefits and risks of this treatment very carefully before you decide. A donor stem cell transplant may increase the chance of being cured, or of getting you into remission more than any other treatment. But you will need to consider this against the risks.

There have been lots of developments in the care of people having a transplant. But some people will still have serious side effects or complications that may be life threatening.

Your specialist will talk to you about this. Although this can be upsetting, it is important that they tell you about all the possible risks.

You will need some time to think things over before you make your decision. You will probably want to talk to your family, friends and partner, if you have one. Most transplant units have a nurse specialist, transplant co-ordinator, social worker or counsellor who you can talk to.

It is a good idea to have someone with you when you talk to the hospital team. They can support you and help you understand the information you have been given. You don’t need to rush your decision.

It is important to have all the information you need first. Make sure you ask your specialist doctor and nurse all your questions. You will usually be given written information. We have more information on making treatment decisions that might help.

I decided to go ahead with the transplant even though I felt completely well. I felt the alternative of living in fear wasn’t an option I could live with.

Jackie


Risks of 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.


Fertility

Unfortunately, most people who have a donor stem cell transplant are no longer able to have children afterwards. This is because of the effects of having high doses of chemotherapy and sometimes radiotherapy. But it will also depend on the intensity of the treatment you have. Your cancer doctor or transplant nurse will explain the risks in your situation.

If you are worried about your fertility, it is very important to talk to your specialist doctor or nurse. They can refer you to a fertility specialist to discuss possible options to preserve your fertility. If you have had chemotherapy before, your ability to get pregnant or father a child may already be affected.


Questions you might like to ask

  • What are the possible benefits of a donor stem cell transplant for me?
  • What are the risks of the treatment?
  • Are there long-term side effects?
  • Will I be able to have children after treatment?
  • What may happen if I decide not to have the transplant?
  • Are there other treatments I could have instead?
  • How long will it take afterwards before I will be able to do everyday things?
  • Do I need the transplant now or could I have it later if the cancer or leukaemia comes back?
  • What happens if the cancer comes back after my transplant?


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. If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion.

Getting a second opinion may delay the start of your treatment, so you and your doctor need to be confident that it will give you useful information. 

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


Research trials

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

Many studies involve hospitals across the UK and other countries. You may be asked if you would like to take part in one. You will be carefully monitored during and after the study. If you decide not to take part, your decision will be respected and you do not have to give a reason. There will be no change in the way you are treated by the hospital staff, and you will be offered the standard treatment for your situation. We have more information on research trials.

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