Treating rare cancer

Cancer treatment is usually planned by a team of specialists called a multidisciplinary team (MDT). Some rare cancers are subtypes of more common cancers. Often these are treated in a similar way to the more common type and are managed by the MDT for that type of cancer. But in some cases, treatment is very different and you may be referred to another MDT with experience of that subtype.

If you have a rare cancer, you may need to travel to a specialist centre to see doctors who have experience in that type of cancer. The treatment may be planned by an MDT at the specialist centre and given in a hospital closer to home. Or the treatment may be highly specialised and given in the specialist centre.

You may be invited to take part in a cancer research trial (also called a clinical trial) as part of your treatment. In this situation, you will be followed up very carefully during and after the study.

Asking questions can make it easier to cope during diagnosis and treatment. It can help to be prepared by writing down a list of questions to ask.

Treatment of rare cancers

Cancer treatment is usually planned by a team of specialists who work together. This team of specialists is called a multidisciplinary team (MDT). They have expert knowledge and experience of a particular type of cancer.

When planning treatment, the MDT take into account:

  • the type and size of the cancer and whether it has spread
  • your general health
  • national treatment guidelines for the cancer (if available).

Some rare cancers are subtypes of more common cancers. Often these rare subtypes are treated in a similar way to the more common type of that cancer. They are usually managed by the MDT for that type of cancer. For example, most rare types of breast cancer are treated in a similar way to the most common type of breast cancer.

But in some cases, treatment is very different. In this situation, you may be referred to another MDT with experience of that subtype. For example, if you have a breast lymphoma, you may be treated by a specialist in non-Hodgkin lymphoma rather than by a breast cancer specialist.


Specialist centres

If you have a rare cancer, you may need to travel to a specialist centre to see doctors who have experience in that type of cancer. Treatments for some rare cancers are similar to treatments used for more common cancers. In this case, the treatment may be planned by an MDT at a specialist centre and given in a hospital closer to home.

If you are having treatment in more than one hospital, it is important you know who to contact if you have questions about your care or appointments. In England, you will have a keyworker who will co-ordinate your care. In other parts of the UK, a clinical nurse specialist will often have this role.

You may want to keep a record of your treatment and appointments to help you to keep track. You can download our Macmillan organiser or order a paper version.

For other rare cancers, treatments are highly specialised. And the cancer treatment is given in the specialist centre.


Planning treatment

Usually doctors use national guidelines to help them plan cancer treatment. The guidelines for each cancer are written by cancer experts and based on research evidence about that cancer.

There are national guidelines for some rare cancers. But this is not always the case, especially for very rare cancers. If there are no guidelines, doctors will use the best evidence available when planning how to treat the cancer.


Cancer research

Research is key to helping doctors find out what treatments work best and developing new, improved treatments for people with rare cancers. Cancer research has helped ensure that twice as many children in the UK survive cancer now compared to 40 years ago.

You may be invited to take part in a cancer research trial (also called a clinical trial) as part of your treatment. Taking part in a trial means that you may be offered a new treatment that might not otherwise be available. You will also be helping doctors find out which treatments may benefit future patients.

If you take part in a trial, you will be followed up very carefully during and after the study. Your doctors will probably want you to have regular tests, such as blood tests or scans, and you may be asked some extra questions about how you are feeling.


Questions for your doctor

Asking questions can make it easier to cope during diagnosis and treatment. Knowing what is happening and why can make you feel more involved in your care. It can also make decision-making easier.

It can help to be prepared by writing down a list of questions to ask. Don’t worry about asking all your questions at once. You will have other chances to ask them. It is also okay to ask the same question again. The most important thing is that you understand what your doctor is telling you.

Here are some questions you might want to ask:

  • How many patients with this type of cancer have you treated?
  • Are there specialist centres that treat this cancer?
  • Can I get a second opinion from a specialist in this type of cancer?
  • What are my options for treatment?
  • What will my treatment involve?
  • What is the goal of treatment for my cancer?
  • What are the chances the treatment will work?
  • Are there any clinical trials being run for this cancer that might be suitable for me?
  • Will I have a specialist nurse?
  • Where can I find more information about the type of cancer I have?
  • Is there a patient organisation or support group for the type of cancer I have?

Back to Head & neck cancers

Diagnosing

causes and risk factors of head and neck cancers

Organising

the practical, work and financial side

Treating

head and neck cancers and what to expect

Coping

with and after treatment for head and neck cancers

Resources

and publications to order, download and print