Chris

By: Leanne Talbot

Posted on: 4 years 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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Name: Chris

Age: 36

Primary Site: Central right Lung
Chris’s Story

Diagnosed in February 2022 after visiting a private GP after my NHS GP wouldn’t see me a persistent cough which worsened with shortness of breath over the space of about 12 months. Was told the tumour was approx 8cm in diameter and encroachment into the pericardium meant pre-adjuvant chemo with a likely surgery required after. The chemo had no effect and I was given a 50/50 chance of a successful operation.

September 21 I had a pneumonectomy with partial resection of the pericardium which was successful but I then encountered a herniation of my heart, pneumonia in my left lung and a fungal infection which resulted in a lengthy ICU stay and induced coma. After 35 days in hospital I was discharged home where I started to deteriorate and after 2 weeks I was readmitted with sepsis and spent another 30 days in hospital to fight the infections.

Move to February 22 and I was admitted for another procedure to have my cavity drained as it was full of puss. Another 2 week stay resulted and most recently I’ve had to undergo rigid bronchoscopies due to a small fistula on my stump.

Today I am back working but have issues with breathlessness, fatigue and chronic pains. The biggest things I struggle with is not being able to be as active as I was before the diagnosis and the lack of follow up support to try and get back to some level of physical activity and normality. Being a lot younger than most patients means the advice that’s out there doesn’t apply to me and I’m left to my own devices in terms of being able to work out if I can actually get back to any normality in the future and how long that may take.

Do you have any useful hints and tips that you would like to share?

I would say definitely talk to friends, families and health professionals about the diagnosis and treatment and don’t be afraid to have the what if discussions and understand what is actually happening.

Select here for support.

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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