Life after childhood cancer - what issues do survivors have to manage?

That’s not to say that people who have had cancer can’t live long and healthy lives with rewarding careers and families of their own. For example, Dr Vicky Forster was diagnosed with acute lymphoblastic leukaemia in 1994, aged eight. In her article for CCLG’s Contact Magazine, she told us how she beat cancer and became a scientist. In 2012, Vicky tweeted:

After moving to Toronto, she worked as a childhood cancer researcher for five years before moving to her current role where she helps other researchers connect with patients and communities to improve the impact and innovation of their research. Vicky has been named in the Forbes ‘30 Under 30’ list for Science & Healthcare, given talks on survivorship and patient engagement across the world, and writes for top media outlets.

Hope is a key part of being human and believing that, one day, things will be better can be vital to anyone enduring long and gruelling cancer treatments.  Survivors have a life to look forward to and there is so much they can achieve.

However, it is also important to recognise how cancer can continue to affect their lives. Whilst the specific effects depend on what cancer they had and what treatment, around two in three survivors will have a long-term side effect of treatment, known as a ‘late effect’. Some of these can be minor, but others can have a big impact. Knowing the challenges that people who have had cancer face can make a big difference, both in helping them to access the right support and helping push for treatments that are better and kinder.

So, what do people who have had cancer as a child face?

Effects on mental health

Going through cancer is a huge experience, and not everyone will feel the same way about it or remember it in the same way. However, there are so many parts of the cancer process that can cause trauma – diagnosis, all of the needles and medications, being separated from loved ones, the constant fear of cancer returning, looking different due to treatment, and even guilt from surviving cancer when others did not.

These feelings don’t vanish when someone is given the all clear, but there is often less support at hand once treatment has finished. They might not even recognise how these traumatic experiences affect them until years later, sometimes after having a strong reaction to a situation that reminds them of that horrible experience. Health anxiety, where survivors worry about their health to the point of it causing issues in day-to-day life, can be difficult to deal with when ill with common infections – even if it is a cold, there might always be the worry that the tiredness or other symptoms are due to the cancer returning.

Another form of anxiety has been nicknamed ‘scanxiety’ – the overwhelming fear families feel every time they have to go for follow-up scans. This can be a difficult period for patients and families, as they often have to wait days before receiving results.

Andrew Sheppard, who was diagnosed with Ewing's Sarcoma in 1999, talked about how he struggled after his cancer treatment:

Having had cancer can also lead to other mental health issues, such as depression, post-traumatic stress disorder, and phobias.

It’s important to remember that, whilst these issues are difficult to deal with, they are natural and not a sign of weakness. People who have been through cancer have experienced some very difficult situations and their brains can be on high alert trying to protect them, or might be struggling to process those experiences. This can affect a person’s day to day life, for example, causing tiredness or withdrawal from activities that they would normally enjoy.

My final point on mental health, is to say that it can also be an issue for family members and loved ones of children who have had cancer. They, too, have been through experiences that are indescribable to other people, and this can be very difficult to deal with.

One parent who responded to our survey about late effects said:

If you have concerns that are affecting your day-to-day life, please do get in contact with your care team or GP.

More hospital visits

People who have survived childhood cancer might be in some form of follow up care for the rest of their lives. Whilst this support is essential, it can lead to very mixed emotions. Some people may feel extremely anxious about attending scans whilst others may find check-ups reassuring. There’s not a wrong way to feel, but understanding that this is a common part of life after cancer could help survivors transition into their new lives – not as cancer patients but as people who are empowered to look after their health.

One person who had cancer as a child told us, through our late effects survey, that:

Effects on learning and memory

If a child had certain types of cancer or treatment, they may have a few difficulties involving the way they think and process information. These can be issues with short-term memory, or slower development, e.g. taking longer to reach certain milestones such as talking.

A parent responded to our late effects survey, talking about her son:

It is important to remember that there is support available – teachers can request assessments to develop an ‘Education, Health and Care Plan’. This can last until a person is 25, if needed, and makes sure that the young person has all of the support needed. Adult survivors who have long-term side effects may also be considered disabled and therefore covered by the Equality Act, protecting them from discrimination.

Effects on hormones and growth

Cancer or its treatment can cause damage to glands in the endocrine system, which produces hormones that regulate many different processes in the body.  This can be caused by cancer growing in or near the glands, or by surgery or radiotherapy near them. Sometimes, damage can take years to show any effects, such as to the pituitary gland in the brain.

Damage to these glands can cause problems with regulating the sleep cycle, diet, tiredness, and development (find out about these here and here).

One parent told us:

The pituitary gland produces hormones that affect a range of body functions such as growth, puberty, fertility and metabolism. It also triggers the adrenal glands, which are near the kidneys, to produce cortisol, a hormone that helps the body respond to stress and illness. Sometimes, damage to this gland can make puberty happen too soon or too late.

In follow-up appointments, doctors can keep an eye out for any possible hormone and growth issues so that they can be treated with synthetic versions of the hormone. Some might need to be taken for life, such as cortisol, but some only need taking for a limited amount of time such as until a patient has finished growing.

Effects on starting a family in the future

Some people who had cancer as a child can also have issues with their fertility. Sometimes, this is due to the glands, but it can also be due to certain types of chemotherapy or locations of radiotherapy (like to the abdomen, pelvis, spine or brain).

For men, doctors monitor testosterone levels and can refer a patient to specialists who can check a semen sample, although this only tends to happen when someone wants to start a family. Low levels of testosterone can be improved with replacement hormones. Replacement hormones can also sometimes help with low sperm counts, if it is caused by a lack of pituitary hormones. There are also a lot of options for fertility treatments to help start a family, such as doctors extracting sperm, or using a donor.

For women, doctors will also monitor hormone levels with a blood test. Sometimes, the levels of these hormones can predict how many eggs remain, which might be helpful if they are trying to become pregnant or planning when to have children. There are also replacement hormones available for women, or fertility treatments like IVF or injections to stimulate egg production.

Kat Greenshields, diagnosed with cancer age 12, said:

Both psychological and physical issues can impact on cancer survivors’ sex lives, so it is important to talk to your late effects team if you are having any issues, as they may be able to help.

Effects on the heart

Some types of chemotherapy, like doxorubicin, can make heart issues more likely, as can radiotherapy to the chest or neck. The standard risk factors, like smoking and diet, can make heart issues more likely. People at risk of heart damage might have routine heart checks, even if they don’t currently have symptoms. Symptoms, when they present, can include chest pain, dizziness and shortness of breath.

Other organs that can be damaged include kidneys, leading to loss of minerals or high blood pressure, the lungs, which can make patients more susceptible to infections and cause long term coughing or shortness of breath, and the spleen, which normally helps the body fight illnesses and so damage can increase the risk of serious infections.

Is there anything else?

This blog isn’t an exhaustive list of all of the potential late effects of cancer, but it hits on a few of the more common ones and how parents and survivors have felt about them. You can find out about others (like bone problems, oral health, secondary cancers, nerve damage and pain) here.

While these long-term issues can sound overwhelming, there are many people who have had cancer who live full and happy lives despite their additional health problems. But that’s still not good enough. We want to continue our research into finding treatments that are not just effective at killing cancer, but are also safe and don’t cause these long-term effects.

Vicky Forster added:

“Childhood cancer treatment is long, often painful with numerous side effects and incredibly disruptive for children and their families. It is my hope that we both work on new treatments for children who still die from cancer, as well as replacing all of the toxic treatments that may work well to eradicate cancer but can leave survivors with life-long health issues.

“It's sometimes hard to see life ever getting back to normal after treatment. But for many survivors and families, this is possible. I've been lucky to have a wonderful, supportive family and have always been able to do everything I wanted to do, from running a marathon to getting a PhD and then moving to Canada.”

If you need support with any of these problems, please get in contact with your treatment centre. If you do not have a follow-up team, you can find information on getting help here. If you would like more information about the long-term effects of childhood cancer, please take a look at our Living Beyond Cancer factsheets.