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The Lost Tribe: Improving the lives of young adults with cancer


Caught between child and adult care, young adult cancer patients have been described as a 'lost tribe'. In this blog, Juanita Bawagan speaks to patient and researcher Sam Beardsworth and Staff Scientist Dr Olga Husson about the unique challenges that young adults with cancer face.

Posted on 15 September, 2021 by Juanita Bawagan

Photo of smiling family: Sam Beardsworth (right) picture with his wife and daughter.

Image: Sam Beardsworth (right) pictured with his wife and their daughter.

Your 20s and 30s are filled with many important changes. This is a phase of life when many young adults are moving out on their own. Professionally, they are starting and progressing careers and personally, they are building relationships and maybe a family.

Facing a cancer diagnosis at this time, and at such a young age, is unexpected for young adults. It’s also very unexpected for doctors and the healthcare system as cancer is less common in young people.

In 2017, Sam Beardsworth and his wife were getting ready for a trip to China that had been years in the making. He was young with no medical conditions, but had sudden symptoms that aligned with those for bowel cancer. When he raised that possibility with a doctor, the answer was swift.

He recalled one GP said: “Absolutely not at your age, no way. We don't get people your age with that sort of cancer.”

Bowel cancer does occur in teenagers and young adults, but it is much more commonly found in those 50 and over. In the UK, about 4 in 10 new bowel cancer cases were in people 75 and over.

A few months of worsening symptoms, several visits with different GPs and one private appointment later, Sam was diagnosed with bowel cancer at 31.

At the time, Sam had just completed his Master’s in social research and was refocusing his career. He and his wife were looking to buy a house in the next few years and then hoping to have kids but switched from ‘planning mode to survival mode’.

Young adults with cancer have been described as a ‘lost tribe’ as they don’t have a home in the medical world. This group, aged 25 to 39 years old, are too old for teenager and young adult cancer treatment (16-24 years in the UK) but more traditional treatment is geared towards older patients. Dr Olga Husson, a Staff Scientist in Clinical Studies at the ICR, says these patients face age-related challenges within the healthcare system and also in their personal lives.

She said: “The cancer puts their lives on hold. They have to undergo treatments, they have to deal with side effects in the short-term – and long term-effects.”

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Delayed diagnosis, fertility discussions and peer support

In a study published in Clinical Oncology, Dr Husson and colleagues looked at the varied experiences of patients in the UK together with four young adult patients, including Sam, who conducted qualitative analysis. The research team interviewed 65 patients with any cancer type between 25 and 39 years old and found they shared challenges including late diagnosis, concerns about fertility and a lack of peers.

For many young cancer patients there is a prolonged cancer diagnosis. Patients and GPs were less familiar with or misdiagnosed cancer symptoms – some chalked it up to work stress or pregnancy. In other cases, people described not having time for GP appointments.

Fertility was another major issue for young cancer patients. While fertility was discussed with patients, some felt the conversations were rushed and treatment began before fully exploring their options to preserve fertility. This especially impacted female patients as fertility options were more invasive. Among female and male patients who wanted children in the future, they reported a sense of regret after treatment because they didn’t understand all the consequences.

There have been great improvements in cancer care for younger patients, but there are still gaps.

In a separate study published in the Official Journal of the Comprehensive Cancer Network, Dr Husson and her colleagues describe a ‘New Lost Tribe’ among young cancer patients with an uncertain or poor cancer prognosis. This is the first paper to look at the specific challenges of these patients and breaks them down into three subgroups: traditional, low grade glioma and new adolescent and young adult (AYA) survivors.

The first group is dubbed ‘traditional’ as these patients are diagnosed with leukaemia, lymphoma, or metastatic tumours where the cancers are well studied, but most research is based on the experience of older patients. The second group were those with low grade glioma brain tumours, part of a family of tumours that are the third most common cancer and cause of cancer death in AYAs. The ‘new survivors’ describe patients who receive novel treatments such as immunotherapy or targeted drugs. Many of these patients live ‘scan to scan’ and can feel more alone with few patient peers.

An individual journey

Young people with cancer represent a very heterogeneous group with huge differences in their cancer types and in their lives. These studies emphasise the need to focus on the individual and their personal cancer journey rather than the disease alone.

Research shows sharing information about lifestyle issues, psychological support and peer support can go a long way to helping flag these issues early on and help patients to find their tribe of people dealing with similar challenges.

Dr Husson said: “You really have to have a specific approach for the person in front of you. It needs to ask: How does your life look like or how did you live your life before the cancer diagnosis? What are your aims and what are your future perspectives?”

For Sam, the journey began with research in understanding his specific cancer type, colon cancer, and treatment options. He had surgery to remove his tumour and then had to take 12 weeks off from work to recover. After further testing, he was given the opportunity to have chemotherapy but ultimately decided that was not the best option for him. Though chemotherapy could raise his chance of survivorship by a few per cent, he was concerned about long term side-effects, particularly cognitive effects.

Sam said: “This decision was the hardest part of my treatment because I felt completely alone and unsupported as a young patient. Doctors were happy to leave the decision in my hands but I felt inadequately informed to make the choice.”

Now, his scans have come back cancer-free for the last three and a half years. A statistician at heart, he knows that his chances are good but he won’t be considered ‘cured’ until he reaches the five-year mark. While he still thinks about his cancer daily, Sam says he’s also planning ahead.

“It just kind of showed me that if you wait for things to be right, it's not going to happen. My daughter is nearly two years old now and I'm hoping to be around for a long time.”


bowel cancer Olga Husson Adolescents Young adult
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