Welcome to Our Newest Ambassador – Julie Diamond

By: Ash Bryant

Posted on: 1 month ago

Trigger Warning.

Please note that while some stories end on a positive note, others may depict the challenging and difficult road that many neuroendocrine cancer patients face.

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I’m Julie, 54 and live in the Midlands. I was diagnosed with Multiple Endocrine Neoplasia Type 1 (MEN1 for short) which is a rare inherited genetic disorder which amongst other things, increases the risk of developing tumours – in essence it is a tumour suppressant gene that doesn’t work properly.

I was diagnosed with MEN1 in 2002 and ever since then have been on an annual screening programme and following a Gallium-68 Dotatate PET scan I was diagnosed with a functioning neuroendocrine tumour (gastrinoma) in my pancreas – pNET, and have since been diagnosed with further gastrinomas in my pancreas and small bowel. I thought as the years went by I was ‘getting away with it’ as each year my scans came back normal – until they didn’t.

Being faced with this diagnosis was daunting – I had never heard of Neuroendocrine Cancer, but the day I found out my diagnosis was the day I knew I needed to find out as much as I possibly could about it. I was pointed in the direction of Neuroendocrine Cancer UK and immediately made contact and ever since then, I have received the most amazing support, providing me with information and guidance which has been invaluable to me.

I knew that I wanted to give something back and applied to become an Ambassador, to help raise awareness, share my story, provide support to others and assist the charity in any way I could. There is so much work to be done to educate people from medical professionals to those we come into contact with on a day to day basis and all those in between.

I am proud to have been accepted into the NCUK Ambassador family and look forward to contributing in any way I can.

Everyone’s experience of neuroendocrine cancer is different. Take your time, and engage with the stories in whatever way feels right for you.

Do you have a story to share?

Sharing what you’re going through with others can be incredibly powerful, helping others to feel less alone, find hope and reassurance, and feel more confident and empowered.

If you have a story to share, we would love to hear from you.

Share your story
Share your story

We’re always looking for people to share their experiences with Neuroendocrine Cancer. Whether you have the personal experience yourself or through a family member or friend, we use stories on our website, on social media, in our patient information, and on occasion, in the press.

By raising awareness of Neuroendocrine Cancer (NC), we can reach and help more people. Personal stories highlight many relevant aspects of living with NC.

Experiences provide insights that support the education of healthcare professionals, raise awareness of possible signs and symptoms pre diagnosis, raise awareness of NC in the general public arena and encourage and inspire other people who have just started their pathway.

Please complete the form below to share your story.

A note about reading and listening to personal stories

Everyone’s experience of neuroendocrine cancer is different. Some stories may offer hope and reassurance, while others may be difficult or upsetting to read or hear. Take your time, and engage with the stories in whatever way feels right for you.

Remember that treatments and outcomes vary from person to person. These stories offer personal perspectives and support, but should not replace advice from your own healthcare team. If something raises questions about your care, speak to your doctor or clinical nurse specialist.

Support and next steps

You do not have to face this alone. Support is here when you are ready.

Disclaimer

The stories and opinions shared here reflect the personal experiences and views of individual contributors and do not necessarily reflect those of Neuroendocrine Cancer UK. They are provided for information and support and are not a substitute for professional medical advice.


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