Supporting the

Neuroendocrine Cancer Community

Age and Diagnosis – Cancer doesn’t care how old you are 

Neuroendocrine cancers are a diverse group of rare cancers that arise from neuroendocrine cells throughout the body. While they can affect individuals of any age, age can often play a significant role in the diagnosis and management of these cancers.  

In younger individuals, symptoms may be mistaken for other conditions, leading to delays in diagnosis. Conversely, older individuals may have age-related health issues that may be assumed to be the cause of new symptoms, this might also delay the diagnostic process. 

In this blog, we’ll explore whether age influences the diagnosis of neuroendocrine cancer and what impact that diagnosis may have when it occurs earlier in life. 

Age Trends in Neuroendocrine Cancer Diagnosis 

Anyone can get cancer, but cancer under is the age of 50 is considered uncommon, under 30, rare.  

The graph (Cancer Research UK) below shows that cancer cases rise with age, rising more steeply from around age 50-60. A third of all UK cancer cases are in people aged 75 and over.  

The average age at diagnosis for neuroendocrine cancers can vary depending on the type and primary site of the tumour. Neuroendocrine tumours can occur at any age, but they are more commonly diagnosed in adults, typically between the ages of 30 and 60. Many population-based studies, of neuroendocrine cancer, report an increasing incidence from the 4th-5th decade of life (40-50’s) – peaking in the 6th. However, there are exceptions, where diagnosis may occur earlier in life – due to site, symptoms – and, where applicable, a known inherited risk may be present (e.g. in multiple endocrine neoplasia {MEN1-5} disorders). 

In a paper published in 2022 (1): the age distribution of more than 40,000 people diagnosed with a neuroendocrine cancer between 1995−2018 ranged from 39-69 (actual age 25 – 77). 

White et al (2022). Incidence and survival of neuroendocrine neoplasia in England 1995-2018: A retrospective, population-based study. Lancet Reg Health Eur.  

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This week we speak with Leanne who was diagnosed at a young age and ask her how it felt being diagnosed and if she was treated any differently. 

Clare – Hi Leanne, thanks for speaking with us today. Can I start by asking, hat age were you diagnosed? Were you surprised to receive a cancer diagnosis?  

Leanne – I was 45 years old when diagnosed. I was more than surprised, I was devastated. It was the furthest thing from my mind when I went for scan results at the Doctors. I thought it was a cyst or hernia. 

Clare – Do you feel that people make assumptions about cancer and the age you are diagnosed? Do they think it’s surprising being diagnosed at a younger age, do they think it’s ‘easier’ for you?  

Yeah, I feel that people automatically think “Awwww” bless her she hasn’t got long then. . . And so young. People are surprised when you say you have cancer, they say “oh you look so well” – like you’re supposed to look poorly. I think people think it’s hard and some think well she’s young and fit and looks so well. When really your insides are a mess, and you just get on with it as you have no choice. They treat you differently and feel sorry for you. When in reality, you just want normality as much as possible because your life isn’t normal anymore. 
 

Clare – Did you, yourself, have any assumptions about cancer/age/diagnosis?  

I didn’t. I know it can happen to anyone; I just wasn’t expecting it to happen to me. I was fit and healthy, (or so I thought). 
 

Clare – Do you think having a diagnosis at a younger age, impacted your treatment options at all? Or are the fatigue/side effects all the same at any age?  

Yes, I think it has impacted my treatment options. Well, I think being healthy and fit helps with options: to deal with the side effects and the recovery from treatments and surgery. Both are not easy sometimes, but I think it must be easier the younger and fitter you are. The fatigue I think will get anyone at any age, because it’s like hitting a brick wall. But I assume you get more tired the older you get, so maybe it is easier when you’re younger. I know the fatigue has impacted my life and the side effects. But you just learn to live with them and manage them the best you can. 
 

Clare – Did it feel more difficult as a younger person – who could, potentially, have younger families, more active hobbies etc?  

It is hard when you’ve got a family, even though my son was 20 when I was diagnosed. It’s still tough for him to see me going through this day in day out. It impacts the whole family too. It’s frustrating for me not being able to do everything I used to do. I have to choose and plan to do things and sometimes you just can’t do the hobbies or go out like you used too. But that’s learning to live with this cancer. 

Clare – Were people surprised to hear of your diagnosis and do you think age had any bearing on their reaction?  

Yes people were surprised and shocked. They just kept saying “but you’re so young” – and “it shouldn’t happen to nice people”.

Clare – Is it difficult to find a community being a younger person with a diagnosis? Whippersnappers etc.  

Definitely hard. I have a lovely support group through NET Natter. But anything outside of that and during the day there is not a lot around for younger people, as everything is aimed at the older retired person. Which I get, but what about people that can’t work due to health issues.  

Clare – Do you have any tips or recommendations on managing a cancer diagnosis at a younger age? 

Try and keep as fit as possible, even if it’s just a short walk. Getting some fresh air and exercise does me the world of good. Try and find other things to occupy your time – especially if you’re not working. They’re long days when all your friends are at work and you’re at home.  

Clare – Do you have any tips or recommendations in general about coping with neuroendocrine cancer? What things do you do to manage the change in your life? 

Getting involved in the NET natters, they have been a godsend for me. Just talking to other people with the same or similar diagnosis is a massive help. It can be a lonely journey otherwise.  

I rest if I know I’m going anywhere or going away for the weekend, then hopefully I can get through the time away. Plan things so you have something to look forward to.  

Try not to let the little things bother you, life’s too short.  

Most of all smile 😊 and pass that smile on to others 😊 

When it comes to your body, you know it best. If something doesn’t look or feel quite right, tell your doctor. Don’t assume it’s due to ‘just getting older’, or part of another health condition you may have.  

Your doctor will want to hear from you, you won’t be wasting their time.