Neuroendocrine Cancer Diagnosis
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NCUK's Not Just NE Cancer Virtual Series
Hello and welcome to our February roundup of the 'Not just NE Cancer' virtual series. Throughout February we looked at Neuroendocrine Cancer diagnosis.
We particularly focused on the following:
Getting the right care | Being Prepared | Emotional Support | Neuroendocrine Cancer terminology
GETTING THE RIGHT CARE
If you’re diagnosed with a Neuroendocrine Cancer, a specialist, Neuroendocrine Cancer specific Multi-Disciplinary Team (a ”NET” MDT) should review your case at diagnosis and on an ongoing basis.
Click the button below for more information about:
- Referrals to specialist Neuroendocrine Cancer services
- Neuroendocrine Cancer specific MDTs
- A current list of experts, clinics and Centres of Excellence in the UK
BEING PREPARED
Whether you want to know every detail of what a Neuroendocrine Cancer can mean or would rather your care team just got on with it, there’s a lot to be said for being prepared.
Everyone deals with illness differently. Some people want to know exactly what’s happening, others prefer doctors to keep things as general as possible - and it’s completely up to you how you approach your life with a Neuroendocrine Cancer.
However, trying to prepare for what is to come can help. This doesn’t mean you suddenly need to spend hours reading medical textbooks or scouring websites about the neuroendocrine system. But it does mean that getting your head around some of the facts and potential implications of a Neuroendocrine Cancer diagnosis can put you in a stronger and maybe less stressful position.
SPEAKING WITH YOUR DOCTOR
Letting your care team know about your overall and long-term health, along with how you’re feeling now, is a vital part of getting the right diagnosis and care. It helps to ensure the right tests are done, and can guide decisions not only about which treatments are right for you, but also about whether you need treatment at a particular time.
It’s really important that you tell your doctors as much information as possible about your health – especially if anything changes.
Keeping a symptom diary or using a health tracker App or even using the blank notes pages at the end of this handbook, may be helpful for you, to write down or record any information you may find helpful for your appointment. It can be easy to forget things just before or during a consultation, so this may be useful – for example, a list of current medicines, current symptoms and/ or any questions you may have.
WHEN YOU ARE FIRST DIAGNOSED
Being diagnosed with Neuroendocrine Cancer can be a lot to take on board - not least the different words and terminology used - it’s like entering a whole new world.
Psychosocial support is an essential part of personalised care and can help you to deal with one of the biggest challenges you may feel you have faced.
This challenge can feel even harder to deal with when you are given a rare cancer diagnosis - especially one that may not be diagnosed and/or treated the same way as other cancers are.
We have produced a leaflet which provides support and covers topics such as;
- The early days
- Dealing with being diagnosed with Neuroendocrine Cancer
- What can help?
- Support available
VIDEOS
This month, NCUK Ambassador, Maria shares with us her Neuroendocrine Cancer diagnosis.
PODCASTS
Real life experiences, practical advice and everything in between. Whether you are diagnosed with Neuroendocrine Cancer or another rare or less common cancer, our podcast series cover topics from initial diagnosis, treatments and follow up, looking after your mental health and the professional perspectives from those involved in your care. Hosted by Catherine Bouvier and produced by Neuroendocrine Cancer UK. We hope this series answers some of your questions or provides a source of support – or both, after all, this is not just NE cancer.
Episode 3: Rambles with Sally: Advice with Kath.
Thank you to this month's video and podcast guests for sharing your personal stories and also to the medics, for your time and knowledge.
SURVEY
We also asked you to get involved and have your say in our monthly survey. We had an incredible response and received 248 completed surveys! Thank you to everyone who took the time to answer our questions.
MARCH
Throughout March we will be focusing on 'Tests & Getting Your Results'.
Again, this month you will have access to videos, podcasts and much more, from those who have experienced diagnosis first-hand, and from the professionals involved in your care.
You can find out more about our virtual series here:
About Us - Neuroendocrine Cancer UK
A diagnosis of cancer is one of the greatest challenges anyone can face. Being diagnosed with a rare or uncommon cancer can have additional consequences, not least in terms of awareness, early diagnosis and access to expertise. Feelings of isolation, fear, uncertainty and anxiety are not uncommon.
Neuroendocrine Cancer UK exists to address the unmet needs voiced by the Neuroendocrine Cancer community, to support patients and their loved ones with the physical and psychological burden of Neuroendocrine cancers.
In 2020, Neuroendocrine Cancer UK (formerly known as NET Patient Foundation) rebranded. We changed our name to better reflect our community, building on the foundation we have laid down over the last 17 years (2002 – Living with carcinoid, 2006 – NET Patient Foundation, 2020 – Neuroendocrine Cancer UK). We want to reduce confusion, and increase awareness of this cancer type and by giving us a more focused and explanatory name, we can better serve our community.
The ethos and mission of the charity remains the same – to support all affected by Neuroendocrine Cancer: to support and inform patients and families from diagnosis, enabling access to the best care and treatment, whilst stimulating Neuroendocrine Cancer research, increasing national awareness and influencing improvements in outcomes.
