Making your decision about treatment

Your doctors use national treatment guidelines to help decide the most suitable treatment for you. High-dose treatment with stem cell support 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 of high-dose treatment are serious infections and bleeding. Most people who have high dose treatment with stem cell support are no longer able to have children afterwards. You can discuss any concerns you have with your specialist doctor.

It is important to have all the information you need about benefits, risks and possible side effects to help you make a decision. Your specialist may also give you information about taking part in a research trial. You are free to choose whether or not to have treatment.

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 your decision

You will need to think about the benefits and risks of this treatment carefully before you decide. It is important to discuss any questions you have with your cancer doctor. You will probably need some time to talk about it with family and close friends. Most units also have a nurse specialist, a transplant co-ordinator, a social worker or a counsellor who you can talk to.

Some people find it helps to talk to someone who has already had this treatment. Talk to the staff at the hospital where you are having your treatment.. You can also use Macmillan’s Online Community to meet people who are going through similar experiences to you.

We have more information on making treatment decisions that might help.


Risks of high-dose treatment

High-dose treatment with stem cell support is a complex and specialised treatment. The main risks are serious infections and bleeding. These are most likely to happen when your blood counts are low.

You will usually stay in hospital for three to four weeks, but some people will stay longer. There are likely to be times when you feel very unwell.

Your doctor will take into account your age and general health before advising you whether to have this treatment. Guidelines do not recommend an upper age limit for this treatment, but doctors do not usually give it to people over 70. This is because the risks of severe side effects are higher after that age. It may also take longer to recover. But the age limit can be flexible depending on your general health, the risk of side effects and the risk of the cancer coming back.


Fertility

Unfortunately, most people who have high-dose treatment are no longer able to have children afterwards. Occasionally, after high-dose chemotherapy without radiotherapy, some people may still be able to have children.

If you are worried about your fertility, it is 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.


Questions you might like to ask your doctor

  • What are the possible benefits of high-dose treatment with stem cell support 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 happens if the cancer comes back after high-dose treatment?
  • What will happen if I decide not to have this treatment?
  • Are there any other treatments I could have instead?
  • How long will it take afterwards before I am able to do everyday things?


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.


Giving consent

Before you have any treatment, your doctor will explain its aims. They will usually ask you to sign a form saying that you give permission (consent) for the hospital staff to give you the treatment.

No medical treatment can be given without your consent.

Before you are asked to sign the form you should be given full information about:

  • the type and extent of the treatment
  • its advantages and disadvantages
  • any significant risks or side effects
  • any other treatments that may be available.

If you do not understand what you have been told, let the staff know straight away, so they can explain again. Some cancer treatments are complex, so it is not unusual to need repeated explanations.

It is a good idea to have a relative or friend with you when the treatment is explained, to help you remember the discussion.

You may also find it useful to write a list of questions before your appointment.

People sometimes feel that hospital staff are too busy to answer their questions, but it is important for you to know how the treatment is likely to affect you. The staff should be willing to make time for your questions.

You can always ask for more time if you feel that you can't make a decision when your treatment is first explained to you.

You are also free to choose not to have the treatment. The staff can explain what may happen if you do not have it. It is essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You do not 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.


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.

Back to Being treated with high-dose treatment with stem cell support

Collecting stem cells

Your stems cells will be collected and stored before you have high-dose treatment.