Being listened to:

Make sure you are being listened to by your healthcare team. Take part in shared decision making about your care and treatment. This should be a collaborative process between patients and healthcare professionals. Click on the image below for more information:

If you don’t feel listened to:

You might want to request a second opinion – it is always good to look for more than one source of information to feel empowered to make the best decisions about your care and treatment to meet your personal needs. Click on the image below for more information:

Choose who you listen to:

There is a lot of misinformation out there, particularly on the internet and social media. Remember to check your sources of information to make sure they are reliable before making informed decisions. Click on the image below for more information:

Patient interviews

Kidney cancer patients from the UK were asked about their experiences of being diagnosed and living with kidney cancer. Here is the first interview with Charlotte. Please click on the image of Charlotte to read her story on our Real stories page:

Charlotte and her colleagues have organised a walk in memory of her husband, Andy, and to raise funds for Action Kidney Cancer. If you would like to support them, please visit the Camilla Ghosh and the PwC Foundation JustGiving page here.

Here is the second interview with Carl. Please click on the image of Carl to read his story on our Real stories page:

In Our Own Words videos

The following videos include kidney cancer patients and carers from the UK talking about their experiences with kidney cancer:

Talking about kidney cancer

Steve, Lynne, and Alison talk emotionally about how they felt when they were told they had kidney cancer, whether they had any support from healthcare professionals to help them deal with the diagnosis, and how they told family and friends of their diagnosis. They also discussed the implications of their diagnosis on their employment and finances.

Coping with a diagnosis of kidney cancer

In this video, Alison, Lynne, Andy and Mick talk about preparing to go into hospital for a nephrectomy, the type of nephrectomy each patient had, and whether they were provided with enough information about the procedure. They also talk about whether they had a biopsy of their tumour.

A carer’s perspective

In this video, Salena, Patrice and Sue talk frankly about their thoughts and feelings when their partner was first diagnosed with kidney cancer. They talk about how they coped with the diagnosis and the advice they would give to other carers/family members.

To watch more videos of patients and carers talking about their experiences of living with kidney cancer, visit our In Our Own Words page.

Shared decision making

The principle that patients should be involved in all the decisions about their own healthcare is called ‘shared decision making’.

Shared decision making is a process which ensures patients are supported to make decisions about their care and treatment which are right for them. It is a collaborative process and it starts with a conversation between the patient who is receiving care and the healthcare professional delivering the care.

The conversation develops into a process in which they work in partnership to make the best possible decisions; bringing together the clinician’s expertise, treatment options, evidence, risks and benefits, and the patient’s individual preferences, personal circumstances, goals, values and beliefs.

One of Action Kidney Cancer’s core beliefs is that patients and their families have an essential role to play in healthcare decisions that affect their lives. Together with the International Kidney Cancer Coalition (IKCC), we have written a series of shared decision aids for people with kidney cancer, their caregivers and families. The booklets are written by a team of patients, patient advocates and medical professionals who between them have supported thousands of kidney cancer patients worldwide.

We hope you will find these booklets helpful as you and your healthcare team navigate the decisions that lay ahead of you. Please click on the image on the right to visit the Shared decision making page on our website.

Talking with family, friends and other patients

Being open with those around you about your cancer, how you’re feeling and what the future holds helps both mental and physical wellbeing. You can also share experiences and tips with other patients via online or in-person patient support groups.

“I’ve been helped by other people to rebuild my life, and I’ll never forget it.”

Steve, patient from the UK