Supporting the

Neuroendocrine Cancer Community

Name: Allison

Age: 41

Neuroendocrine Cancer Site: Primary – Pancreas with Lymph Node spread

Allison’s Story:

In 2018, at the age of 38, I was diagnosed with a grade 1 pancreatic neuroendocrine tumour with spread to 7 lymph nodes.

 

I presented with a 2-3 day history of severe abdominal pain, radiating to my right side and back. Due to the severity of the pain and the fact that I could not change its intensity with movement, I consulted my GP who prescribed pain killers and referred me for an ultrasound. My world fell apart when the radiographer identified a small mass in my pancreas.

 

As a relatively young, healthy mum juggling two small children (then aged 7 and 5) and a full time role as an NHS physiotherapist on the Acute Stroke Unit, this diagnosis had come completely out of the blue.

 

I entered a whirlwind of appointments – CT scans, blood tests, a PET scan and surgical consultations. I underwent a Whipples procedure three weeks after my initial ultrasound and subsequently spent 3 weeks in hospital due to complications, including a post-operative bleed necessitating further surgery, drainage of a collection of fluid behind my liver and sepsis secondary to a drain site infection.

 

I was cared for by a fantastic team of surgeons, anaesthetists, nurses, health care assistants and dieticians. They supported me every step of the way and helped me through some really emotional times.

 

I was fortunate not to require any chemotherapy and I have progressed from 3-monthly scans to annual scans.  My diet is normal and I think I can say I have my creon use down to a fine art. I have undergone genetic screening and the team have found no known genetic reason for my tumour.  This was reassuring for myself and my family.

 

I still have regular follow up with my Clinical Nurse Specialist, Dietician and Oncologist.  At three years post-diagnosis, I am back juggling my family life and my role as a Clinical Lead.  I know that I never expected that things could be this good again and I’m so grateful for the network of people who have got me here!

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

My family and friends got me through this – I cannot emphasize enough how important a support network is for both practical and emotional support. Don’t be afraid to ask for help! In my experience, people want to support in any way they can.

 

In the early days, my emotions were all over the place and there were times when I felt I couldn’t cope. A good friend reminded me to literally focus on each moment and what needed to be done. This advice kept me sane at times and helped me plan for my hospital admission, arrange childcare and plans for my kids to keep things as normal as possible.

 

Finally, remember that it’s ok to struggle some days. I was so grateful for my swift diagnosis and excellent care that I felt guilty if I was feeling low. Allowing myself to cry sometimes and let the emotions out was essential.

Have you used any of the NCUK’s services, if so which? and how have you found them helpful?

NCUK gave me inform and awareness that I am not alone – that’s why I want to share my story too.