Sharp increase in delayed diagnoses as young people with cancer delay medical help

The impact of coronavirus is being felt acutely by young people with cancer due to late referrals and diagnoses, a leading cancer charity, The Youth Cancer Trust has warned. The charity also predicts a sharp increase in delayed diagnoses in this age group as a direct result of the pandemic.

As charities begin to evaluate the impact of the pandemic, The Youth Cancer Trust has seen a fear of the disease impacting young people in seeking medical care. Young people, (14 – 25) have sometimes been dismissed or overlooked when reporting symptoms to primary care however now, along with the fear of the pandemic, young people are even more put off from seeking medical care or are experiencing delays in accessing it.

26 year old cancer patient, Jade, explains how lockdown has affected her life:

“I am in remission and was diagnosed with MDS when I was 13/14 years and this is how I have felt during this very stressful time. Over the last few months I haven’t been to go to my hospital appointment for my check ups.  I had a phone call appointment which is better than nothing but it’s not the same and didn’t feel normal at all. I said I was worried and didn’t know how to feel.  At first it didn’t affect my work but as time went on and things got bad, I had to stop working and stayed at home where it was safe.

“At this time I also have started some IVF treatment having scan and test which that got put on hold which I wasn’t happy about but at the same time it was the safest thing to do at a time like this.

“When this got bad I had to start shielding at first – it was ok because I had things to catch up on my job but as the days and months went on I felt alone – weird. I felt like that normal life had been taken away –  I couldn’t see my friends and some of family members – it was heartbreaking.

“I didn’t like this feeling at all – so many things running though my head – I was worried I was going to become ill regardless if it was Covid.  My life had changed from working full time and being independent to needing someone to do things for me and also to staying in.

“At the start of lock down I did go for walks but again as time went on I didn’t want to do anything ,in the 3 months of being off and shielding I had chest pains and wasn’t feeling great, shaking sweating.  I went to the doctor and explained what’s been happening over the few months, he put me on some tablets and signed me off for the month saying it was anxiety and a little bit of depression due to what has been going on.  I said some days it feel like my heart is going to come out my chest, so he advised me to refer myself which I did and I have a an appointment with someone.

“My medication had to be changed due to the side effects but what I am on now seems to be ok. I have good and bad days and feel low in my self and don’t want to do anything . My life has changed so much and it’s become so different – it’s unreal from working full time to being now stuck in and have to be careful . I am now on the waiting list on IVF for a donor and looking forward to becoming a mum when it happens .

Studies into the impact of the pandemic on young people have shown a quarter of 25-29 years olds are very worried about the effect that Coronavirus is having on their lives (ONS, n.d.). Research published in the Lancet (Lancet Oncol 2020; 21: 1023–34), predicts that COVID-19 will increase the mortality rate of cancer patients between 4.8% and 16.6% depending on the type of cancer.

The Youth Cancer Trust warns young people could be forgotten by healthcare providers and may be diagnosed late. The trust is calling on healthcare providers to encourage young people to visit their GPs and come forward if they are reporting symptoms in the hope fewer people will be diagnosed late.

“Since the start of the pandemic, Youth Cancer Trust has been working with over 150 young people living with cancer on a safe and secure digital environment. It has become a huge concern to us that many are experiencing severe mental health issues about treatment delays, issues surround loneliness, visiting their GP or consultant, going back to the workplace, finding a job along with anxieties surrounding undertaking simple activities such as going out to get basic essentials due to the fear of catching Covid-19.” Says Georgina Hillman (Manager)

Like many charities, The Youth Cancer Trust has seen a fall in donations. During the pandemic, the Trust quickly adapted and continued to support young people with cancer by focusing on providing support online with activities and signposting support. However, the trust is calling for support for cancer charities from Government to help bolster support for young people with cancer.