“Being diagnosed with any cancer is devastating enough, but it is vitally important to understand not just the site but the type, as this can lead you down a very different path. By understanding that variance it ensured that I had access to, and was reviewed by a specific neuroendocrine team and the dedicated support services on offer for neuroendocrine cancer patients.
When I was diagnosed with cancer in my pancreas I was absolutely terrified, but very quickly I was told that my cancer was a VIPoma, a type of Neuroendocrine cancer, and the astounding specialist team at King’s college were able to remove the cancer in my VIPoma in the pancreas and a small metastasis in my liver.” Olivia Williams
Congratulations to Pancreatic Cancer UK on the ‘Lost Voices’ awareness-raising campaign to mark Pancreatic Cancer Awareness Month. Despite many medical advances in oncology, Pancreatic Adenocarcinoma (PDAC) continues to be difficult to diagnosis early and outcomes have barely improved over recent decades, so it is crucially important to have a strong focus on raising awareness.
However, as with many cancers, there are variations – one of which is Pancreatic Neuroendocrine Cancer – which accounts for up to 7% of ALL pancreatic cancers diagnosed – the most common being Pancreatic Adenocarcinoma (or PDAC).
Pancreatic Neuroendocrine Cancer can be equally difficult to diagnose, however, it may follow a very different pathway to diagnosis and have different treatments – especially as it has both an acute, high-grade variation (Pancreatic Neuroendocrine Carcinoma or pNEC) and a more chronic, potentially lower grade variation (Pancreatic Neuroendocrine Tumour pNET).
Terms that may be used when receiving a diagnosis of Pancreatic Neuroendocrine Cancer include:
- Non-functioning Pancreatic Neuroendocrine Tumour or Carcinoma
- Functioning Pancreatic Neuroendocrine Tumour – which include: Insulinoma, Gastrinoma, VIPoma, Glucagonoma, Somatostatinoma and/or PPoma
For those diagnosed with a Pancreatic Neuroendocrine Cancer – you may be screened for the presence of Multiple Neuroendocrine Neoplasia type 1 (MEN1) as part of your diagnostic tests – a rare associated genetic condition (~2 per 100,000).
If you already have a diagnosis of MEN1 – part of your ongoing care may include screening for Pancreatic Neuroendocrine Cancer – please note that the pNETs of MEN1 are NOT the same as the more common PDAC.
For those diagnosed with a Pancreatic Neuroendocrine Carcinoma – you may find that your care and treatment is similar to that of Pancreatic Adenocarcinoma.
If you, or someone you care about has been diagnosed with Pancreatic Neuroendocrine Cancer – PNET, PNEC, Insulinoma, Gastrinoma, etc. Neuroendocrine Cancer UK offers disease specific support and information: Visit us here: www.neuroendocrinecancer.org.uk Or call our Helpline on: 0800 434 6476.