NCUK's Not Just NE Cancer Virtual Series

Hello and welcome to our March roundup of the 'Not just NE Cancer' virtual series. Throughout March we looked at Neuroendocrine Cancer 'Tests & Results'.

We particularly focused on the following:

Blood & Urine Tests | Tests Using Scopes | Scans | Biopsy (Histopathology)

Click here to learn more about the different types of tests mentioned above

GETTING YOUR RESULTS

Finding out if you have Neuroendocrine Cancer, how it’s behaving over time or whether treatment is working can be stressful, especially if you’ve had to wait a while for results. But planning ahead for results day can help you prepare.

Questions you may want to ask about your results

Click here for the full list of example questions

VIDEOS

Neuroendocrine Cancer Histopathology.

What is Histopathology?
To confirm the diagnosis of Neuroendocrine Cancer your care team might want to take a small piece of tissue, a collection of cells or some fluid from your tumour so it can be examined under a microscope for the presence of cancer.

Why is it done?
Studying tissue under a microscope is often the only way to be absolutely sure of a cancer diagnosis. It can give clues about where a cancer started, what kind of cancer cells exist and how quickly they are multiplying. This knowledge can help doctors to recommend the best treatment.

What’s involved?
There are various ways of taking tissue samples – these include include biopsy, VATS, FNAs and BALs.

Please watch this video to learn more about histopathology and the role of a histopathologist, presented to us by Consultant Histopathologist, Mojisola Giwa.

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 4: In this episode of Not Just NE Cancer, NCUK's Cathy speaks to Consultant Gastroenterologist, Raj Srirajaskanthan at King's Hospital London about an MDT's approach to Neuroendocrine Cancer.

Listen Here

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 149 completed surveys! Thank you to everyone who took the time to answer our questions.

You can read the results of the survey here

STORIES & EXPERIENCES

VOICES OF NCUK - Living with Watch and Wait, Long Term by Martin.

NCUK Ambassador, Martin shares with us his experiences of the tests, treatments and the clinic appointments which he's faced over the last 18 years.

You can read Martin's full story here

APRIL

Throughout April we will be focusing on 'Understanding Neuroendocrine Cancer'.

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.