Supporting the

Neuroendocrine Cancer Community

Living with Neuroendocrine Cancer

Living with Neuroendocrine Cancer has been described as like being on a rollercoaster. So there may well be times when things aren’t easy, and this section is here to help you deal with those times. We focus on some of the challenges you might face including:

and ideas that can help you to deal with them.

We’ll talk about the reality of living with Neuroendocrine Cancer and offer some practical tips that may help, including information about:

Well . . I’d worked myself up to having to deal with treatment and cure or treatment and dying . . . I hadn’t considered there was the possibility of living with cancer . . . that there would be an option of treatment and living with, rather than ‘beyond’ or after cancer.

Living with Neuroendocrine Cancer – the patients’ experience

Select play to watch Jane, a member of our patient community talk about living with Neuroendocrine Cancer, two years post-diagnosis.

Select play to watch Ambassador, Ashley talk about her diagnosis and life living with Neuroendocrine Cancer, post-surgery.

We can’t tell you that everything is going to be OK or that your life won’t change. Or that relationships and emotions won’t sometimes get messy as you adjust to life with Neuroendocrine Cancer. Important aspects of your life – your relationships, work life and social life – will be affected to some degree.

There will be times when life feels great, of course. Many people live well for years, following diagnosis and we very much hope this will be the case for you. But living well can depend on many things:

  • Your physical health and disease status – type, grade, treatments, etc.
  • Your emotional health – worry, concern, anxiety, how you react/cope with challenges/stress
  • Your social and familial health – those around you; family and friends, work-colleagues/employers/employees – how much support you have and how much others depend on you.

Emotional Wellbeing

How we think and feel is often influenced by our memories, experiences, relationships, beliefs, those around us, as well as our hopes for and concerns about the future.

Being diagnosed with cancer can throw our thoughts and emotions into chaos. It’s completely natural to experience a whole range of different feelings – often at the same time – and trying to work out how you feel, or think you should feel, can be distressing.

One thing that’s certain is that there’s no right way of reacting to the news that you have cancer. But it can help to try to identify and name the emotions you’re feeling. Just as with physical health, where identifying the symptom and cause can help treatment – in emotional health, identifying the feeling and why you feel that way can help in dealing with it.

Most thoughts and feelings are helpful, but some can become harmful and may negatively affect our decision-making and quality of life.

Select Play – This video explores the emotional journey individuals with neuroendocrine cancer often face. Rareminds Founder Kym discusses strategies for coping, including seeking support from healthcare professionals and trusted individuals, being patient with yourself, and accepting and addressing complex thoughts and feelings.

Finding ways to cope

There are plenty of things you can do to get through bad days, from laughing with friends to working out exactly what’s making you stressed.

Having coping strategies in place is a good idea for lots of reasons. It helps you work out which things make you feel better. It helps you understand when you are likely to struggle. And it helps you to respond to difficult situations and feelings in a positive way, rather than in ways that could make you feel worse.

Coping strategies don’t need to be complicated – they’re just ways to help you relax if treatments, tests or living with a Neuroendocrine Cancer get you down.

Select play to watch Rareminds CEO, Kym’s ‘Focus & Grounding Exercise’ for dealing with Anxiety.

Select play to watch Rareminds CEO, Kym’ talk through the ‘Four Square’ breathing exercise. A breathing technique for managing anxiety.

Mindfulness

It can be easy to rush through life without stopping to notice much.

Paying more attention to the present moment – to your own thoughts and feelings, and to the world around you – can improve your mental wellbeing.

Some people call this awareness “mindfulness”. Mindfulness can help us enjoy life more and understand ourselves better. You can take steps to develop it in your own life.

Professor Mark Williams, former director of the Oxford Mindfulness Centre, says that mindfulness means knowing directly what is going on inside and outside ourselves, moment by moment.

“It’s easy to stop noticing the world around us. It’s also easy to lose touch with the way our bodies are feeling and to end up living ‘in our heads’ – caught up in our thoughts without stopping to notice how those thoughts are driving our emotions and behaviour,” he says.

“An important part of mindfulness is reconnecting with our bodies and the sensations they experience. This means waking up to the sights, sounds, smells and tastes of the present moment. That might be something as simple as the feel of a banister as we walk upstairs.

“Another important part of mindfulness is an awareness of our thoughts and feelings as they happen moment to moment.

“It’s about allowing ourselves to see the present moment clearly. When we do that, it can positively change the way we see ourselves and our lives.”

Ref: NHS.

Select play to watch a series of mindfulness videos. 

Relationships and Sex

As part of the Neuroendocrine Cancer UK Virtual Summit 2021, Julia Segal, Relationship and Couples Therapists talks about Relationships, Sex, and Neuroendocrine Cancer. Select play to watch.

In this insightful session, Sexuality Expert Sarah Peart tackles the nuanced topic of Sex and Cancer at the March 2024 Neuroendocrine Cancer UK Webi-Natter. Sarah discusses the physical impacts of cancer on sexuality, addresses relational dynamics, and offers practical interventions.

Managing Pain

Explore the complexities of pain management in neuroendocrine cancer. Join us as Dr. Ros Taylor, a highly esteemed Palliative Specialist, shares her expertise and compassionate insights on this crucial topic.

Understanding the unique challenges faced by individuals living with neuroendocrine cancer, Dr. Taylor delves deep into the various aspects of pain management. From different types of pain to the importance of a multidisciplinary approach, she provides invaluable guidance for patients, caregivers, and healthcare professionals alike.

In addition to Dr. Taylor’s enlightening discussion, we are delighted to recommend listening to a podcast episode featuring Sally, a remarkable neuroendocrine cancer patient. Sally generously shares her personal journey and experiences with pain control, providing listeners with a relatable and practical perspective.

Through Sally’s podcast episode, you will gain insights into her strategies for dealing with pain and discover firsthand the techniques she has found effective in her own neuroendocrine cancer experience. Her story serves as a powerful reminder that shared experiences can be instrumental in navigating the challenges of pain management.

Sally’s firsthand experiences, combined with Dr. Taylor’s expert insights, provide a holistic understanding of pain management in neuroendocrine cancer. By engaging with these resources and sharing them with others, you can actively contribute to the journey toward enhanced pain control and improved quality of life for individuals affected by this condition.

Select play to watch Dr Ros Taylor, Palliative Specialist talk about difficult pain and Neuroendocrine tumours.

Sleep

Sleep

If you are having trouble sleeping, there are things you can do that may help improve your sleep.

In this guide we will explore different methods to manage sleep issues. Neuroendocrine Cancer patient and former Ambassador, Sally share her tips to a good night’s sleep.

Fatigue rules my life. Having a long-term condition that will never be cured leaves us NET [neuroendocrine tumours] patients not only with the physical effects from therapy and the tumour burden, but also with a psychological fatigue. Psychological support is necessary to be able to accept the situation and maximise quality of life – to enjoy the good things and not regret what had to be given up.

I know now how to manage my physical and psychological fatigue. I’ve found yoga extremely useful as it allows me to work within my limits. And my yoga teacher is very understanding when I fall asleep in class – they put a blanket over me, I snooze for ten minutes, and then continue with the exercises. I couldn’t do that in an aerobics class! Personally, I recommend recognising your own limits, then accepting and working within them. This approach allows me to maintain a reasonable quality of life, but it is not the same quality of life as before the diagnosis.

Planning for the Future

Uncertainty isn’t always difficult, many of us have regular experience of it – for example going somewhere new, buying a lottery or raffle ticket. However, when uncertainty is about our health or the life we expected to live – it can be difficult and take a lot of emotional energy.

How well you feel day-to-day, what effect treatment may have, or how much your diagnosis will affect plans is not always predictable.

A diagnosis of Neuroendocrine Cancer is unlikely to be something you envisaged as part of your life plan, however, over time, and with the support you may need, you will find new ways of living with it and the effect it (and / or its treatments) has and may have on your life. Finding a ‘new normal’ and how to adapt to change is really helpful in learning to live well with Neuroendocrine Cancer – both physically and emotionally.

Diet & Nutrition

There’s no diet suitable for everyone!

We have based this section on the questions we’re asked the most often – and hope it’ll help you to feel more confident about what to put on your plate.

Is there a special Neuroendocrine Cancer diet?

This is the question about nutrition we’re asked more than any other – and, in a word, the answer is no. There’s no one specific diet suitable for everybody who has Neuroendocrine Cancer. There may be adjustments you need to make to what you eat. You may need to add things to your diet based on your general health, your treatment, the type of Neuroendocrine Cancer you have or if you’re losing weight. But there isn’t a special diet that everyone should follow.

Unsurprisingly, though, as when you’re dealing with any kind of cancer, eating well makes sense. A normal, healthy, well-balanced diet can help you to:

  • Stay at a healthy weight.
  • Maintain a healthy immune system, which can protect you from infections.
  • Cope with treatment.
  • Maintain your fitness level, so you have the energy to exercise and do everyday tasks.
  • Recover and heal after treatment.

Neuroendocrine Cancer: Vitamins and Minerals – is supplementation necessary?

Work & Neuroendocrine Cancer

Select play to watch Health Psychologist and co-founder of ‘Working to Wellbeing‘, Dr Julie Denning talk about returning to work support.

Practical  Advice

What happens if my cancer progresses?

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