All patients and carers should have access to a range of information materials about cancer and cancer services throughout the course of their illness. This information should be high quality, accurate, culturally sensitive, specific to local provision of services, free at the point of delivery, timely and in accessible formats.A diagnosis of cancer has a major impact on both patients and their families or carers. Those affected have to consider their own mortality and are often faced with difficult and confusing decisions regarding their treatments.Renal cancer is a complicated condition. Treatment often involves surgery, whether it be open surgery or laparoscopic, and this can be a difficult time for patients as they need a great deal of support and information throughout their patient journey. With the introduction of tyrosine kinase inhibitors (TKIs) there is now an increase in treatment availability for patients with metastatic disease, or for attempting to downstage the cancer prior to considering surgical removal. The patient is expected to actively participate in the treatment decision-making and health care professionals should be offering patients information and support throughout this time.Treatment options associated with renal cancer, regardless of its stage, will carry significant physical and emotional side effects, which may be life-long. For example, those who undergo radical surgery will have a large incision scar, affecting nerves and muscle resulting in a permanent change in their body image/perception.
Administration of TKIs can result in side effects, such as stomatitis (soreness of the mouth), changes in skin and hair, blisters and a rash on the hands and feet (palmar-plantar syndrome). Other side effects can include taste changes and loss of appetite. These side effects may also result in significant psychological distress, as well as the obvious physical effects, for which the patient will need support and reassurance.
Some people with renal cancer may choose to adopt a surveillance approach to their cancer, if for example they have other significant illnesses that make them unfit for surgery or systemic treatment. For many, this carries a psychological burden in that they have to come to terms with knowing that they have a cancer in their body, which has not been treated.
For those patients whose disease no longer responds to treatment, palliative care is required. Palliative care attempts to make the end of a person’s life as comfortable as possible by attempting to relieve pain and other distressing symptoms while providing psychological, social and spiritual support. Palliation of symptoms should not only be considered in the terminal phases of illness. Renal cancer patients may need access to palliative care services almost from the point of diagnosis. Carers and family may also be offered emotional and spiritual support to ensure a ‘holistic’ approach to palliative care. Organisations such as Macmillan Cancer Support and Marie Curie Cancer Care offer palliative care services.
Many of the main cancer charities have patient information, which can be requested for patients. Also the NHS has a wealth of patient information available, for instance, NHS Choices webpages (http://www.nhs.uk/conditions/Cancer-of-the-kidney/Pages/Introduction.aspx ) in the UK.
Whatever the treatment modality, follow-up for renal cancer is regular and involves repeat scans or assessments. This in itself is anxiety provoking as patients and their families await results.
Psychological distress, fatigue and issues of social and family life are reported to be the most important concerns of patients with cancer.
How Can We Ensure that Renal Cancer Patients are Supported?
Support Groups
In many countries, there is no shortage of support groups for the more common cancers, such as breast cancer and lung cancer. However, there are comparatively few support groups for patients with renal cancer, a disease that is considered a ‘rare’ cancer in the UK and does not benefit from high awareness among the general public. This does not apply to the US, where there are many support groups, which are very active.
However the amount of general urology cancer support groups are increasing and patients with renal cancer should have access to these. As renal cancer is a ‘rare’ cancer, and in rural places people suffering from this disease may be few and far between, it can be difficult to set up a dedicated renal cancer support group, and keep it running. In the UK there are support networks available online, with chat forums to allow people to share their feelings/stories and get support from mutual sufferers.
Many studies have demonstrated the positive psycho-social effects on those who attend professionally-led support groups. Such effects include improvement in mood, less traumatic adjustment to the disease and increased pain control.
The important factors associated with professionally-led support groups are that they offer facilities for members to share feelings, make friends, learn how to cope and live with the diagnosis of cancer, as well as receive good quality, up-to-date, evidence-based information about the disease from informed health care professionals.
Written Information
It is well known that people do not retain all that is said to them in normal circumstances. Add to this a new cancer diagnosis and difficult treatment choices to make that may involve life altering side-effects, and it is not surprising that those affected by renal cancer are often left feeling very confused. It is essential that they do not leave the uro-oncology department without written information of the highest quality that is individually tailored to their needs. In the UK, information prescriptions are now available for most cancers. You can visit the Information Prescription Generator Tool at http://www.nhs.uk/IPG/Pages/AboutThisService.aspx
Keyworkers
It is essential that anyone affected by renal cancer are given the name and contact details of a health care professional with a specific interest in their case. Those affected must be made aware that someone is available to answer any questions they might have. In many cases this key worker will be the uro-oncology nurse specialist but it may also be the medical practitioner involved in their care.
Charities and Organisations for Patients and Families
A great deal of professional support and information is provided by cancer charities and organisations in many countries. The services provided will vary between organisations, but many will facilitate the setting up of patient support groups, provide specialist one-to-one counselling and support help-lines staffed by specialist nurses. Pre- and post-diagnosis patients should be advised of the most appropriate cancer organisations and the services they offer. The following are the key renal cancer organisations in the UK:
Kidney Cancer UK
Our mission to reduce the harm caused by renal cancer by increasing knowledge and awareness, providing patient information and by supporting research into the causes, prevention and treatment of the disease. Kidney Cancer UK provide patient information leaflets to people affected by renal cancer and their families or carers, in addition to supplying information to health care professionals. They also have a very good online forum, Facebook page, Facebook group and a useful website with links to other sources of help for people affected by renal cancer. Their web address is http://www.kcuk.org.uk
Counselling – Kidney Cancer UK offer a free counselling service which s available to all patients. If you would like to know more about this free service, please CLICK HERE
Kidney Cancer UK Support Line is a telephone helpline supported by Kidney Cancer UK, which provides practical information, support and encouragement for people with kidney cancer and their families. Cancer patients or carers, who can draw on their own experience of the kidney cancer to support and encourage patients and their families during the difficult time following a diagnosis of kidney cancer, operate the Careline. To visit the web page CLICK HERE and the freephone number is 0800 002 9002.
Kidney Cancer UK Patient Support Group – Kidney Cancer UK provide a closed Facebook page for patients, carers and loved ones to support each other through exchange of stories, treatments and general support for each other. This page, at time of this publication, had over 650 active members sharing and supporting each other. You can access the page here (registration and approval is required)
Cancer Research UK is the largest cancer research organisation in the world. One of its websites is Cancer Help UK, a free information service about cancer and care for people with cancer and their families. The web address is http://www.cancerhelp.org.uk.
Macmillan Cancer Support helps people living with cancer and their family, friends and carers find a way through the maze of cancer support and information in the UK. The web address is http://www.macmillan.org.uk.
Marie Curie Cancer Care runs hospices throughout the UK and provides a nationwide Marie Curie nursing service. Marie Curie nurses provide free nursing care to cancer patients and those with other terminal illnesses in their own homes. The web address is http://www.mariecurie.org.uk
Support for Nurses
Many cancer charities and organisations offer services and support for health professionals who care for people with this disease. In addition, many countries also have specialist urological nurse associations who can be a focal point for renal cancer nursing care. These associations often offer information, protocols and guidelines, and hold events for non-specialist nurses who wish to find out more about the care of renal cancer patients.
Examples of specialist urological nursing associations include:
- British Association of Urological Nurses – http://www.baun.co.uk/
- Society of Urological Nurses and Associates (United States) – http://www.suna.org/
- Urology Nurses of Canada – http://www.unc.org/
- Australasian Urological Nurses Society – http://www.auns.org/