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Living With Neuroendocrine Cancer as a Young Family, by Mary

By: Neuroendocrine Cancer UK

Posted on: 2 months ago

Living With Neuroendocrine Cancer as a Young Family, by Mary

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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Partner’s Date of diagnosis: May 2025

Where treated: Clatterbridge

Neuroendocrine Cancer Primary site: Pancreas

Treatment now: Everolimus 10mg

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Mary’s Story

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Tom was just 27 when our lives completely changed.

For around seven months before his diagnosis, Tom had been experiencing ongoing abdominal pain. He repeatedly went to the GP looking for answers but was told that he had health anxiety and that drinking too many fizzy drinks was likely the cause of his symptoms. After months of being dismissed, we finally convinced our GP to send Tom for an ultrasound.

The ultrasound revealed tumours on Tom’s liver and something on his pancreas. A biopsy and further scans then confirmed it was neuroendocrine cancer.

That was when our whole journey of learning about neuroendocrine cancer began. Tom was diagnosed with a stage 4, well-differentiated grade 2 pancreatic neuroendocrine tumour (pNET), with metastatic disease in his liver. Neither of us had ever heard of NETs before, so suddenly we were having to learn about scans, biopsies, Ki-67 scores, treatment options and a completely new world of terminology.

It was a lot to deal with.

Being diagnosed so young, and with a young family, has obviously been difficult. We have our little boy Ronnie, and cancer changed the way we looked at our future almost overnight. But a year on, we have come to terms with the fact that this is part of our lives now. That doesn’t mean it’s always easy, but we don’t want cancer to stop us living.

We’ve also had to accept that some things have needed to change. Tom has reduced his hours at work, and I’ve moved into a new job. We’ve had to find a better balance between work, family life, treatment and simply looking after ourselves. We’ve realised that making small changes throughout your cancer journey isn’t giving in or letting cancer win – it’s about making life work for you and allowing yourself to be as well as possible.

Tom is currently taking 10mg of Everolimus daily, which has given him disease stability. We go away, make memories with Ronnie, spend time together, and appreciate the ordinary days that perhaps we would have taken for granted before.

Being the partner of someone with cancer is also a journey in itself. You’re going through it together, but your fears and worries aren’t always the same. There is a lot that comes with trying to keep family life normal, supporting each other, and being there for Ronnie. We’ve learnt to communicate, support each other, and keep moving forward together.

A huge part of Tom’s ability to cope has been his mindset. He always tries to turn something negative into a positive and refuses to let his diagnosis become his identity. That attitude has helped both of us enormously.

We’ve also made it our mission through social media to advocate for patients with neuroendocrine tumours, raise awareness of a cancer that so many people have never heard of, and share what living with cancer actually looks like. The community we’ve built has become such an important part of our journey, and we’re passionate about helping other patients and families feel less alone, especially young people navigating a cancer diagnosis.

We still have difficult days, ‘scanxiety’ and worries about what the future may bring, but we also laugh, make plans, go on holidays, watch Ronnie grow and enjoy our life together.

We don’t know exactly what the future holds, but we refuse to put our lives on hold waiting for it.

We’re living with cancer, not dying from it.

Written by Mary, August 2026

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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