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3. What to expect from you pancreatic cancer care: Timely treatment that is individual to you, and proper management of symptoms and side effects

Decisions about your treatment for pancreatic cancer

You should be fully involved in decisions about your care. Your medical team should explain your pancreatic cancer and treatment options in a way that you can understand. The benefits of any treatment should be discussed, as well as the disadvantages.

They should involve you in making decisions about your care, and should answer any questions or concerns you have. It is up to you whether or not you have the treatment they have recommended.

Speak to your doctor about how your treatment fits with the NICE guidelines. If it doesn’t fit with the guidelines, ask why not. The NICE guidelines recommend the best treatment options based on your diagnosis, whether the cancer has spread, and how well you are. 

Second opinion

You can ask for a second opinion from a different doctor, if you want one. You don’t have a legal right to a second opinion, but most doctors will help you get one, if you ask for one. Don’t delay your treatment while you get a second opinion, as it can take several weeks.

Treatment for pancreatic cancer as soon as appropriate

You should receive treatment for pancreatic cancer as soon as the doctors have finished tests to work out the stage of your cancer and the best treatment options for you. The stage describes the size of the cancer and whether it has spread.

Your first treatment should begin within 31 days of agreeing with your doctor what treatment you will have.

The NICE guidelines recommend faster treatment in some situations. For example, the guidelines recommend that people who can have surgery but have jaundice should be offered surgery, rather than having a treatment for jaundice first – as long as they are fit enough for surgery.

Holistic Needs Assessment

You should be offered a holistic needs assessment at key points in your care. During the holistic needs assessment, your nurse or keyworker will discuss a range of things with you, including any physical, emotional, spiritual or practical issues. They should then develop a care plan for you, which should include managing any of these issues.

Diet and nutrition and pancreatic cancer

You should be given advice and support to manage problems with eating and symptoms related to diet and nutrition. Pancreatic cancer and its treatment can affect how well your pancreas produces the enzymes which help you digest (break down) food. This can cause symptoms which can be treated with pancreatic enzyme supplements. These help to digest food and can make a big difference to how you feel.

Soon after your diagnosis you should be given information about diet and managing any symptoms you have. You should also be given enzyme supplements and be told how to take the enzyme supplements properly, so that you are confident doing this.

You should see a dietitian, and ideally a specialist dietitian who is an expert in diet and cancer. They can assess your symptoms and diet, and provide expert advice tailored for you.

Read more about diet and pancreatic cancer.

You can also speak to our specialist nurses on our free Support Line about any questions about diet and nutrition.

Pain and pancreatic cancer

Your medical team should help you manage any pain you may have effectively.  They may refer you to a specialist palliative or supportive care team, who are experts in managing symptoms, including pain. Palliative care aims to relieve any symptoms you may have, including pain, as well as making sure you get the emotional, physical, practical and spiritual support you need. Supportive care aims to make sure that you get this care from diagnosis, throughout your cancer.

Palliative and supportive care aren’t just for people at the end of life, and this care should not affect any treatment you may be having.

Read more about pain and how it is managed.

Clinical trials

You should be told about any research study such as clinical trials that may be suitable for you to take part in. Speak to your doctor about whether there are any clinical trials that might be suitable for you.

Read more about clinical trials.

Follow-up care for pancreatic cancer

Following any treatment, you should have appropriate follow-up care and any side effects should be monitored. You should have check-ups after your treatment to check how well your treatment is working and to manage any side effects. You should be provided with information on what to expect following treatment and how to manage any possible side effects.

Your GP should keep a record of your diagnosis and treatment. Throughout your treatment, your GP should be told about any changes in your condition, treatment, and any possible stays in hospital.

You and your family should be involved in plans for your ongoing care. Your medical team should make arrangements for any support that you need at home. The support offered might include nursing care at home involving Macmillan or district nurses, care packages by health or social care, or special equipment or adaptions.

Read more about the care you should expect and receive:

Information Standard

Updated August 2018

Review Date August 2020