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.

You may have many questions about the transplant. You will be able to discuss these with your specialist. It’s 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’re free to choose whether or not to accept 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.

Benefits of high-dose treatment

High-dose treatment with stem cell support allows you to have much higher doses of chemotherapy than usual to treat the cancer or leukaemia. This treatment can be used to increase the chances of curing certain types of cancer or leukaemia.

It can also be used to help keep cancer in remission for as long as possible. Remission means there are no signs of the cancer.


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, which are most likely to happen when your blood counts are low.

You will usually stay in hospital for 3-4 weeks but for some people it may be 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 to have this treatment. Guidelines recommend an upper age limit of 70 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, high-dose treatment usually causes infertility (being unable to have children). Occasionally, after high-dose chemotherapy without radiotherapy, some people may still be able to have children. In this situation, fertility does not usually return until a few years after treatment.

It’s important to talk to your specialist doctor or nurse if you are worried about your fertility. They can tell you about any options for preserving your fertility before treatment starts.


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. 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, and have a list of questions ready, so that you can make sure your concerns are covered during the discussion.


Giving your 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, and 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 don't understand what you've been told, let the staff know straight away, so they can explain again. Some cancer treatments are complex, so it's not unusual to need repeated explanations.

It's 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's 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 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.


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?
  • Are there long-term side effects?
  • Will I be able to have children after treatment?
  • What happens if my cancer comes back after my high-dose treatment?
  • What will happen if I don’t have this treatment?


Clinical trials

Research trials are carried out to try to find new and better ways of carrying out stem cell treatments. Trials that are carried out on patients are known as clinical trials. Trials are the only reliable way to find out if a different type of treatment is better than what’s already available.

Taking part in trial

You may be asked to take part in a treatment research trial. There can be many benefits in doing this. Trials help to improve knowledge about cancer and develop new treatments. You will be carefully monitored during and after the study.

Usually, several hospitals around the country take part in these trials. It’s important to bear in mind that some treatments that look promising at first are often later found not to be as good as existing treatments or to have side effects that outweigh the benefits.

If you decide not to take part in a trial, your decision will be respected and you don’t have to give a reason. However, it can help to let the staff know your concerns so that they can give you the best advice. There will be no change in the way that you’re treated by the hospital staff, and you’ll be offered the standard treatment for your situation.


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

Collecting stem cells

High-dose treatment begins with the collection your stems cells from your blood or bone marrow.