Introduction
This learning resource provides information for people with serious mental illness to understand what happens during the cancer diagnosis process. This module could be useful if you have been referred to the hospital to see whether you have cancer, or if you have been diagnosed with cancer and are undergoing further tests to understand your illness.
In this module you will find information about:
Understanding what a cancer diagnosis might mean for you
Going through the cancer diagnosis process is likely to be an upsetting and overwhelming experience. Everybody has their own experiences with cancer, but there are lots of forms of support available to help you manage the diagnosis process, the diagnosis itself and your physical and mental wellbeing.
If you’re in the cancer diagnosis process, you are likely to have a number of appointments with unfamiliar healthcare professionals. You might want to think about how you approach appointments to make sure you get all the information you need from them.
You might find that there are lots of unfamiliar words used to describe your cancer diagnosis or treatment. Macmillan Cancer Support have a useful tool allowing you to look up terms and phrases related to cancer.
Getting support from your mental health team
If you are in the process of being tested for cancer, or have been diagnosed with cancer, it is important to tell your normal contact at your mental health service and your GP as soon as you can. It is also important to tell your cancer team that you are under a mental health service as soon as you can. This will help your GP, mental health team and cancer team to work together to support you.
If you are diagnosed with cancer, you will be supported by a team of cancer specialists. This team may include doctors, allied health professionals, such as dietitians, and a Clinical Nurse Specialist (cancer nurse). The role of the cancer nurse is to support you through your cancer pathway, from ensuring you have access to information to supporting your decision making. This person will be your key contact for support throughout your cancer pathway.
Your GP and mental health team are responsible for your general health. They can also give you emotional support and advice on recovering, maintaining a healthy lifestyle, work, benefits and financial support. They may also be able to support people close to you.
Remember to keep going to any regular check-ups you have at your GP practice and with your mental health team. These may include blood pressure checks or cervical screening. It is important to care for your general health during the diagnosis process and (if you are diagnosed with cancer) your treatment.
Additional tests and treatment pathways related to cancer diagnosis
How long will the diagnosis process take?
It is normal for the cancer diagnosis process to take weeks. Although this can be a worrying time, it will not usually impact how successful your treatment is if you are diagnosed with cancer. And remember – most people who have been referred for further tests aren’t diagnosed with cancer.
You may also find that you have lots of appointments with different health professionals during the diagnosis process. You might find that setting reminders using your mobile phone, or having a friend or relative support you with attending appointments is useful to help keep track of where you need to be.
If you’re feeling as though the diagnosis period is having an impact on your mental health condition, make sure you speak to your cancer and mental health teams.
If your GP thinks you might have cancer, you will be referred to a specialist. Your first contact with a specialist might be by phone call or an appointment at the hospital. Your specialist will then organise more tests depending on the type of cancer which is suspected. These tests might include:
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Biopsies (taking a small sample of the suspected cancer and analysing it in a laboratory)
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Blood tests
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Endoscopies (using a small camera to look inside your body)
You might have to wait two or more weeks for the results of these tests to become available. Macmillan have more information on different tests for cancer on their website.
If you are diagnosed with cancer, you should not usually have to wait more than about a month between the diagnosis and starting treatment. If you have been waiting for longer than a month and you feel worried, you should speak to your clinical nurse specialist who will be best-placed to provide an update for you.
Support to help you manage your diagnosis
In the video below, Rime, a person with lived experience of both cancer and serious mental illness, talks about some of the support she found helped her to manage her cancer diagnosis:
In south east London, a number of cancer information services are available to help you during the uncertain period around a diagnosis. These services can give you more information about cancer and also help you access additional support if you need to.
If you live outside of south east London, you can contact your GP or health care professionals for the contact details of local cancer information services. If you live in south east London, you can contact the following cancer information services:
Guy’s and St Thomas’ NHS Foundation Trust
Dimbleby Cancer Care is a support and information service based at Guy’s Cancer Centre for patients and their carers from south east London and west Kent. The staff work closely with the clinical teams to make sure you have all the information and support you need while having cancer treatment at Guy's and St Thomas' NHS Foundation Trust.
Telephone: 020 7188 5918, Monday to Friday, 9am to 5pm.
King’s College Hospital NHS Foundation Trust
The Macmillan drop-in cancer information centre at King’s College Hospital provides help and support if you are living with – or have survived – cancer. They also can assist your carers, your relatives and your friends.
Telephone: 078 1339 9714 to speak to a member of the team, Monday to Friday, 9am to 5pm.
Email: kch-tr.macmillan1@nhs.net
Lewisham and Greenwich NHS Trust
The Macmillan advice and guidance service is based at the University Hospital Lewisham. They work with clinical nurse specialists to provide holistic care to cancer patients, including phone support, information, and recommending cancer support resources and services.
Telephone: 020 8333 3336, Monday to Friday, 9am to 5pm.
Email: lg.mags@nhs.net
Other support services
Many cancer services will run their own advice and guidance services. Speak to your cancer team or visit the website of your cancer service to find out more.
There are also a number of charities who also run support and advice services for people affected by cancer. Two of the larger charities offering this type of support are:
You can also search for services near you using the Cancer Care Map, an online resource with details of a wide variety of support local to you.
Preparing for cancer treatment
Your cancer team
Following your diagnosis, your specialist cancer team will explain the plan for your treatment and any further tests needed. Sometimes you might hear this team referred to as your Multi Disciplinary Team (MDT). The members of your Multi Disciplinary Team will depend of your needs and might include:
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Clinical Nurse Specialist: a nurse who specialises in a particular type of cancer and who acts as your main point of contact.
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Oncologist: a doctor who specialises in treating cancer using drugs (including chemotherapy) or radiation (radiotherapy).
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Surgeon: a doctor who specialises in performing operations to remove or reduce cancers.
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Radiologist: a doctor who uses x-rays and other imaging tools to examine cancers.
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Cancer rehabilitation professionals: team members including physiotherapists, occupational therapists, dietitians or speech and language therapists that can help you maintain or restore functions that may be affected by your cancer.
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Allied health professionals: these include Dietitians, Physiotherapists and Radiographers. Depending on the type of cancer you have, you may be supported by allied health professionals to prepare for treatment and manage side effects during treatment. They also support your recovery after treatment.
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Cancer support worker: works with the Clinicial Nurse Specialist to support you with guidance and information during the cancer process.
Together, this group will work with you to decide what the best way of treating your cancer should be. If you have questions about your cancer, you should normally be able to contact this group through your designated clinical nurse specialist. Your clinical nurse specialist will be your point of contact throughout your diagnosis and treatment and you will be provided with their contact details.
Soon after your diagnosis, you should be offered an assessment of your personal needs with the key worker – this is sometimes called a Holistic Needs Assessment. This is a checklist which helps you consider all aspects of support you may need, including physical, practical, emotional and spiritual concerns. After you have completed this, your clinical nurse specialist will meet with you to discuss the assessment and develop a personalised care and support plan. This is a good time to discuss your mental health condition with your cancer team so that they can provide the best support for you.
If for any reason you are not offered a holistic needs assessment, please ask your clinical nurse specialist for one.
Getting yourself ready for treatment
Looking after your overall health and wellbeing can help to reduce the side effects of cancer and cancer treatment.
If you have not seen your GP, Clinical Nurse Specialist or mental health team during the diagnosis process, it is a good idea to make an appointment with them if you are diagnosed with cancer.
During the treatment process, your cancer team should send your GP treatment summaries - you should also be able to ask them to share this with your mental health team. You should always tell your GP and mental health team about any problems you need help with.
Your GP and mental health team should have an agreement with your treating team to share your follow-up care. They may also prescribe some of the drugs you need.
As well as continuing to work with your GP and mental health team to maintain your general physical health and wellbeing, there a few simple actions you can take that will have a really positive impact on your treatment:
Cancer and cancer treatments can make you feel less fit, and reduce your muscle and bone strength. Doing regular exercise before and during your treatment will reduce these side effects and. Try and aim for:
- 30 minutes of aerobic activity at least 5 days a week. Aerobic activity is anything which makes your heart beat faster or feel out of breath. This could include going for a brisk walk, jogging or swimming.
- Strength-based activities at least twice a week. This could include using resistance machines at a gym, climbing stairs or doing exercises such as squats or push-ups with your body weight at home.
South East London Cancer Alliance have more information about physical activity and exercise on their website, including a learning module to support you with being active while living with cancer.
A healthy diet will help your body recover more effectively from the stress of cancer and cancer treatments. Try to prioritise:
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Drinking enough fluids. Good hydration (drinking enough water or other fluids) is important for everyone. You should aim for 8-10 glasses of water or other fluids each day. You can find out more on the BDA website.
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Maintaining your current weight. Cancer treatment can reduce your appetite and make you lose weight. Do not try and lose weight by reducing how much food you eat, unless you have been told to do so by your cancer team.
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Getting a balanced diet and making sure you get enough protein. Try and make sure every meal has a mix of fruit or vegetables, carbohydrates (such as potatoes or rice) and protein (such as meat, fish, cheese, lentils or beans). Protein is especially important during cancer treatment as it will help your body to rebuild, such as muscle and bone strength.
Find out more about having a healthy diet during cancer treatment from Macmillan.
Most cancer services will also be able to provide individual support to help you manage your diet alongside any existing medications and cancer treatment. Speak to your cancer team about being seen by a specialist dietitian to find out more.
Cutting down or giving up smoking and alcohol can significantly improve your overall health.
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For people with serious mental illness living in south east London, specialist support is available to help you give up smoking at South East London and the Maudsley NHS Trust. If you are being cared for by a different mental health service, speak to your care coordinator or other clinician about the support available to you. You should always speak to your mental health team if you are planning to smoke less (or more) as it may significantly impact on how your body reacts to some mental health medications.
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There are lots of ways to reduce your drinking in manageable steps. If you’re drinking regularly, you could try having “drink free days” every week, or using smaller glasses. Every small step will make a big difference over time. For support, speak to your mental health team, your GP, or online NHS information.
Your cancer team will be able to help you with support and advice on staying well before and during your treatment. You can also find more information on the Cancer Wellbeing London website.
Summary
