Adolescents and Young Adults with Cancer

Young people with cancer face many additional challenges. These need to be acknowledged, and supported.

Estimated read-time: 13 minutes

  1. Can you get cancer at a young age?
  2. Being a young person with cancer
  3. Challenges for young people with cancer
  4. Relationship issues when you are a young person with cancer
  5. The impact cancer has upon a young person
  6. The long-term implications of having cancer at a young age
  7. The mental health support for young people with cancer
  8. Common concerns young people with cancer have after treatment

Can you get cancer at a young age?

There is a perception that surely you can be too young for cancer?

Cancer can occur at any age, although it is somewhat rare to have cancer young.

Statistically, cancers which occur in adolescents and young adults who are aged between 15 and 39 years old, account for 5% of all new cancer diagnoses.1

Although cancer is a major cause of death in this age group, the survival outlook is good with a better prognosis than many adult cancers,2 with 82.5% being cured over the long-term.3

The over-riding emotion following a diagnosis in a young person with cancer will be of shock, as they simply feel too young to have cancer.

The biggest question then is, how can this have happened?

For many young people with cancer, this disease is thought of as being caused by a combination of reasons cumulating over time, leading to the right conditions being created for cancer to occur.

It is widely recognized amongst the general public that around 40% of cancers are linked with preventable causes are linked to modifiable lifestyle choices such as smoking, obesity and alcohol consumption.4,5

Other known cancer promotors which permit such a so-called acquired ‘somatic’ mutation to develop, relate to; our toxic environment, viruses or simply old age.

The next question then is; are cancers caused in young people because of genetic mutations which are inherited?

Perhaps surprisingly, according to the National Comprehensive Cancer Network, very few adolescents and young adults are affected by a hereditary mutation, which are scientifically referred to as ‘germline’ mutations.6

The exact reason why cancer develops in the young is hard to pinpoint, but it is thought that such cancers can occur spontaneously and at random.

The cancers which present in the young are the result of the bad luck of an abnormality occurring during the normal process of cell division and is not thought to be linked to any specific carcinogen or genetic inheritance.7

Being a young person with cancer

The age bracket which defines an adolescent and young adult (AYA) spans from early adolescence at 11 years old, right through to the age of 45.8

Having cancer at a young age can be a lot to have to deal with and is a very tough, unexpected experience to have to go through so young.

For AYAs, cancer is a major challenge which arrives at a stage when huge developmental changes are already occurring in life.

The surprising arrival of this disease can devastate the carefree, fearless, boundless and invincible state of being young has to offer.

Most people during this time will be advancing their education and careers, forming lasting friendships, travelling, perhaps meeting their life-partner and thinking of starting their own families, establishing their adult lives and putting down roots for the future.

Teenage hope

This age-group is typically full of hope, ambition, excitement and fulfilment as they enjoy achieving many of life’s formative milestones.

This means that the young person facing cancer will require special consideration and support whilst going through these many physical, cognitive, social and emotional changes9.

Due to the lower incidence of cancers occurring in the young, some medical practitioners may not have had much experience in dealing with an adolescent or young adult with cancer.10

In the past oncologists who do not routinely deal with this age-group have treated AYA’s as either children or adults, however in recent years there has been a drive to treat young people as a distinct patient group.11

Every individual young person will need to have their specific needs assessed, not only during the treatment phase with regard to their specific cancer type, but also throughout their ongoing supportive care plan.

This overarching support will help control and manage any lasting side effects, including most importantly any future fertility concerns, so that any further disturbance to their life chances is limited.12

A holistic assessment of all the young person’s psychological, social and economic13needs unique to the individual with cancer will also have to be put in place.

Cancer will affect all aspects the young person’s life. They will need access to a supportive network to help them withstand the impact upon their mental health and adjust to any changes to their education or work situation and financial circumstance.

Recovery after childhood illness

Challenges for young people with cancer

The challenges faced by young people with cancer are essentially the same as those which adults must cope with when they are diagnosed with cancer and their life is interrupted.

Like many adults, young people will fear the uncertain future.

The resulting impact having cancer will have upon their education, work and finances along with the changes it will bring to family life and dynamics of their friendships and relationships.

Worries will also be provoked about the possibility of dying and big questions around spirituality and faith will arise.

There will be stress in anticipation of the treatment plan and what side effects will be experienced in the short term, then over the long-term.

Other matters of concern will surround how best to support overall wellbeing through all this physical and mental trauma.

Body image and self-confidence are huge issues for any young person with or without cancer. For many young people with cancer the impact cancer and its treatment will have upon self-image and self-worth should not be overlooked.

In fact, there will be many questions a young person with cancer will have, such as;

  • What specific nutrition, vitamin and supplement regimen and exercise program to follow?
  • How best to live a normal life as possible, is it possible to still do sport, socialize or travel?
  • What side effects will there be?
  • How long will the recovery take?
  • What will the future hold?
  • Who can you to turn to get the right information, advice and support specifically tailored for the younger age group?

It is important to raise any concerns or issues through open communication with the medical team in order to prevent and minimize the impact cancer will have upon a young person’s life.

Seeking the support needed from the trained specialist counsellors and your medical team there to help is the best place to start.

Relationship issues when you are a young person with cancer

Young people normally rely on the support of their friendship groups, their family or their relationship.

Yet for young people with cancer additional problems may develop within their support network of those around them.

Shifts within their inner circle can occur. Family, friends, personal relationships, even potential future relationships may also be affected or influenced by cancer.

In general, when young people with cancer have the backing of their families, their quality of life is better as a direct result.14

This is because having good relationships to rely upon builds resilience.15

The intensity of the emotional rollercoaster a cancer journey is can place a huge strain upon any family, however close they are or were before this major life challenge began.

The young person with cancer will not be the only one who suffers, their parents, siblings and grandparents will be massively challenged in their abilities to cope.

It is normal for family dynamics to rapidly change throughout these formative years leading to adulthood as young people are naturally finding their independence making their own decisions, including their own choices regarding their health.

However, it is difficult for many parents to not be involved in crucial decision-making which can lead to a difficult struggle between the parent and young person.

This loss of independence the young person will undoubtedly feel will only add to the sense of being out of control of their own destiny the young person is already experiencing.

The result is a difficult and awkward tightrope for their concerned parents to walk.

The oncology team will most likely choose to have dual conversations with the parent and young person which are respectful to all involved and age appropriate.16

This will especially be the case regarding the sensitive, intimate and confidential issues of; prognosis, potential loss of fertility, sexual function, body image issues, participation in clinical trials, lasting side effects, existential crisis and if relevant, end of life wishes regarding options of care.

Teenager with cancer

The impact cancer has upon a young person

Having cancer can seem as if life has been paused in front of you and that your life and future plans are on hold until you can get through this period of your life.

For now, all that you can do is watch others live their lives in front of you, as your focus must be upon getting well again.

The pace of change which typically happens during this point in anyone’s life can be hard to keep up with.

So seeing your peer group develop and move on in aspects of their lives such as; education, work, relationships along with becoming financially and emotionally secure can be very distressing.

It can be hard to find the right path to getting your life back on track.

There can be a real sadness for those young people who feel that having cancer has made them miss out on the normal experiences in life.

This emotional reaction of grief and loss are common as you see your peers move on in their education and personal lives whilst you receive treatment and take time out to recover.

Within friendship groups, feelings of isolation and difference from can become apparent as you have experienced such dramatically different current life situations.

Young people with cancer can discover that it becomes increasingly difficult to relate to those around you and manage their reactions.

However, it is important to remember that relationships at this age can be fluid under normal circumstances.

Anyone facing cancer will not only discover who their real and true friends are, but they also will make new connections through the cancer community with others in a similar situation.

Often lasting friendships are made as these are the people close to you who can understand what you are going through.

The long-term implications of having cancer at a young age

The lasting, long-term implications for all those living in survivorship after suffering cancer in their childhood, adolescence or young adulthood are the same.

The legacy cancer leaves will be an ongoing challenge for these survivors to have to cope with for the rest of their lives.

Regaining normality and stability back into their lives may take time and be difficult both on a practical and emotional level.

Getting back into education or work may need to be a staged and slow process as young people regain their identities, try to fit into peer groups and resume the normal experiences of childhoods, adolescence or young adulthoods.

After cancer, the young person survivor may feel forever changed; their outlook and their attitude to life may always reflect the magnitude of their experience.

Cancer community

They may always be driven to be involved in the cancer world, continuing to be supported long into their survivorship.

Perhaps they will go on to show their gratitude and love of life by giving back their energy through fundraising or even following a career path which helps others facing cancer.

Equally and oppositely, they may choose to distance themselves from this episode in their life.

They may prefer to draw a line and move on, refusing to be defined by cancer, focused and determined to get their lives back on track.

Clearly, there is no right or wrong way to react after a major life incident such as cancer.

The mental health support for young people with cancer

It is widely recognized that the lasting psychological impact cancer will inflict upon not only the young survivor themselves, but also their caregivers and inner support circle, will last long after treatment ends.17

Mental health support to help anyone navigate the big issues and emotions provoked by cancer is essential.

Yet for young people with cancer there is a greater need because this trauma has happened at such an influential and vulnerable age, when the young person is already having to deal with many significant life changes and developmental transitions.

Young survivors are not only vulnerable to anxiety and confidence issues18 but also psychological suffering and pain.19

The major issues young people with cancer will have to face are;

  • having to deal with the legacy of having suffered hair loss
  • learning to live with difficult body image concerns due to visible scarring20
  • the uncertain future and
  • the potential impact upon their fertility.

Along with the lasting mental health issues which will young people will face, they will also be further challenged by the long-term complications of lasting side effects21 which may not be fully felt for years to come.

Depending upon the cancer type, stage and treatment, a range of lasting side effects such as chronic fatigue, pain, incontinence, cognitive changes, heart failure and kidney failure amongst other side effect can be experienced over the long term.

Continued contact with their medical team throughout their lives is to be expected, as these issues are managed and controlled over the long-term.

Common concerns young people with cancer have after treatment

Two major concerns which can become significant sources of worry and distress for not only the young person with cancer but also their families are;

  • firstly, the possible impact cancer can have upon future fertility and
  • secondly, the potential for the cancer to return or another cancer to develop.

Infertility can be one of the long-term secondary losses with the biggest impact which a young survivor could suffer and is the cause of an additional major psychological distress which an older adult will not have to suffer.

Young people with cancer will suffer the risk of becoming permanently infertile.

Yet this will all depend upon several factors; the type and location of the cancer is important as treatment such as surgery and radiation may affect the reproductive organs and tissues.

Relationships after cancer

The gender and age and genetics of the young person will also be of significance, along with the type, combination and dosage of any systemic treatment undertaken such as chemotherapy.23

The Oncofertility specialists will attempt to follow up as many options for fertility preservation as possible, crucially before treatment starts.

Advancements in this field are continuously being made and available in the mainstream such as ovarian and testicular tissue freezing, so it is essential to check that you have access to the latest treatments.

These issues surrounding fertility need to be raised as close to diagnosis as possible so that your medical team can ensure that all necessary precautions are urgently carried out.24

It is important to be aware that it is still possible to have a healthy baby after cancer, especially if attempts to preserve fertility are successful.

Otherwise, there are many different routes to having a child with the help of assisted reproductive techniques (ARTs) for example by using; donor eggs or sperm, a surrogate or even through adoption.

As part of a young survivors’ continued care plan, there should always be access to specialized counselling.

This will provide the required support in the future when potentially the issue of infertility will become a more important factor in the young person’s life.25

The other major concern for young survivors of cancer is the real threat of a secondary cancer occurring at any point in the future26 affecting 17-19% of this population.27

The ongoing follow-up care received from the medical team over the long-term.

This will continually assess the overall risk of any potential secondary cancer occurring through screening programs.

It is so important to always be aware of and promptly report any bodily changes and to understand better your hereditary disposition through genetic testing.

Leading a healthy lifestyle based upon good nutrition, exercise and limiting exposure to known cancer risk factors such as smoking, alcohol and obesity are also central to living well as a cancer survivor.

If you think the information on this new website would be helpful to others, please like and share the word.

Recommend to others facing cancer, on support forums, social media, in person or by email. Thank you.

Life after teenage cancer

References

  1. National Cancer Institute (2019) Adolescents and Young Adults with Cancer, Available at: https://www.cancer.gov/types/aya (Accessed: 1st October 2019).
  2. Bialasiewicz, K. (2018) ‘Cancer in the young: progress and priorities’, The Lancet Child & Adolescent Health, Volume 2 (Issue 3), pp. P157 [Online]. Available at: DOI:https://doi.org/10.1016/S2352-4642(18)30041-5 (Accessed: 3rd September 2019).
  3. ASCO Post (2019) How Cancer Affects Adolescents and Young Adults, Available at: https://www.ascopost.com/issues/may-25-2019/how-cancer-affects-adolescents-and-young-adults/ (Accessed: 1st October 2019).
  4. Brown, K. F. et al. (2018) ‘The fraction of cancer attributable to modifiable risk factors in England, Wales, Scotland, Northern Ireland, and the United Kingdom in 2015’, British Journal of Cancer, 118, pp. pages 1130–1141 [Online]. Available at: https://www.nature.com/articles/s41416-018-0029-6 (Accessed: 27th August 2019).
  5. Golemis, E. A. et al. (2018) ‘Molecular mechanisms of the preventable causes of cancer in the United States’, Genes & Development, 32(13-14), pp. 868–902. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6075032/ (Accessed: 27th August 2019).
  6. NCCN Guidelines for Patients (2019) Adolescents and Young Adults with Cancer, 2nd edn., United States of America: NCCN Foundation.
  7. Hudson, MD, M.M. (2010) ‘Reproductive Outcomes for Survivors of Childhood Cancer’, Obstetrics & Gynecology, 116(5), pp. 1171–1183. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4729296/ (Accessed: 18th May 2019).
  8. UCLA Center for Integrative Oncology (2019) Young Adults With Cancer, Available at: https://www.simmsmanncenter.ucla.edu/index.php/services/young-adults/
  9. Riis, P. & Smith, S. (2018) Nursing Adolescents and Young Adults with Cancer, 1st edn., Switzerland: Springer.
  10. Barr, R. (2018) ‘Diagnostic timeliness of cancer in adolescents and young adults’, The Lancet, Childhood & Adolescent Health, Volume 2(ISSUE 3), pp. P159-161 [Online]. Available at: https://www.thelancet.com/journals/lanchi/home (Accessed: 12th May 2019).
  11. Bialasiewicz, K. (2018) ‘Cancer in the young: progress and priorities’, The Lancet Child & Adolescent Health, Volume 2 (Issue 3), pp. P157 [Online]. Available at: DOI:https://doi.org/10.1016/S2352-4642(18)30041-5 (Accessed: 3rd September 2019).
  12. McNeely, MScPT, PhD, M. L. (2012) ‘Cancer Rehabilitation: Opportunities and Challenges’, Physiotherapy Canada, 64(2), pp. 111–112 [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3321997/ (Accessed: 20th April 2019).
  13. Cavallo, J. & Tonorezos, E.S. MD, MPH (2018) The ASCO Post- Closing the Gap in Oncology Care for Adolescents and Young Adults, Available at: https://www.ascopost.com/issues/may-25-2018/closing-the-gap-in-oncology-care-for-ayas/ (Accessed: 1st September 2019).
  14. Vlachioti, E. et al. (2016) ‘Assessment of quality of life of children and adolescents with cancer during their treatment’, Japanese Journal of Clinical Oncology, Volume 46 (Issue 5), pp. [Online]. Available at: https://academic.oup.com/jjco/article/46/5/453/2218870 (Accessed: 13th May 2019).
  15. Barakat, L. P. (2010) ‘Quality of life of adolescents with cancer: family risks and resources’, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2903513/, 8(63), pp. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2903513/ (Accessed: 13th May 2019).
  16. Australian College of Nursing- Collegian (2019) The adolescent’s experience of cancer: An integrative literature review, Available at: https://www.collegianjournal.com/article/S1322-7696(18)30308-1/fulltext (Accessed: 12th May 2019).
  17. Kazak, A.E. Ph.D. (2004) ‘Surviving Cancer Competently Intervention Program (SCCIP): A Cognitive‐Behavioral and Family Therapy Intervention for Adolescent Survivors of Childhood Cancer and Their Families’, Family Process, Volume 38 (Issue 2), pp. Pages 176-191 [Online]. Available at: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1545-5300.1999.00176.x (Accessed: 9th March 2019).
  18. Children’s Cancer and Luekemia Group (2019) Childhood Cancer Emotional Health and Wellbeing Research Fund, Available at: https://www.cclg.org.uk/researchfunds/ehwb/impact (Accessed: 9th March 2019).
  19. Chimielowski, M. & Territo, B., 2017. Manual of Clinical Oncology. 8th ed. Philadelphia: Wolters Kluwer.
  20. Children’s Cancer and Luekemia Group (2019) Childhood Cancer Emotional Health and Wellbeing Research Fund, Available at: https://www.cclg.org.uk/researchfunds/ehwb/impact (Accessed: 9th March 2019).
  21. Karlik et al., J.B., 2018. Associations between healthy lifestyle behaviors and complementary and alternative medicine use: integrated wellness.. JNCI Monographs, [Online]. Volume 2014, Issue 50, 323–329. Available at: https://academic.oup.com/jncimono/article/2014/50/323/911485 [Accessed 9 December 2018].
  22. Snyder, Ph.D. et al., K. A., 2010. Crisis, Social Support, and the Family Response: Exploring the Narratives of Young Breast Cancer Survivors. Journal of Psychosocial Oncology, [Online]. 28(4), 413–431. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2904631/ [Accessed 10 December 2018].
  23. Hudson, MD, M.M. (2010) ‘Reproductive Outcomes for Survivors of Childhood Cancer’, Obstetrics & Gynecology, 116(5), pp. 1171–1183. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4729296/ (Accessed: 18th May 2019).
  24. Ahmad, S. S. (2016) ‘Anticancer chemotherapy in teenagers and young adults: managing long term side effects’, British Medical Journal, 354(i4567), pp. [Online]. Available at: https://www.bmj.com/content/354/bmj.i4567 (Accessed: 12th May 2019).
  25. Armuand RN, PhD, G. et al. (2018) ‘Threatened fertility: A longitudinal study exploring experiences of fertility and having children after cancer treatment’, European Journal of Cancer Care, Volume 27 (Issue 2), pp. e12798 [Online]. Available at: https://onlinelibrary.wiley.com/doi/abs/10.1111/ecc.12798 (Accessed: 9th March 2019).
  26. Gupta, S. (2019) ‘Adolescents and young adults with cancer and the risk of subsequent primary neoplasms: not just big children’, Oncology, Volume 20, ISSUE 4, P466-467 [Online]. Available at: https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30941-0/fulltext (Accessed: 12th May 2019).
  27. Ahmad, S. S. (2016) ‘Anticancer chemotherapy in teenagers and young adults: managing long term side effects’, British Medical Journal, 354(i4567), pp. [Online]. Available at: https://www.bmj.com/content/354/bmj.i4567 (Accessed: 12th May 2019)

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ASCO Post (2019) How Cancer Affects Adolescents and Young Adults, Available at: https://www.ascopost.com/issues/may-25-2019/how-cancer-affects-adolescents-and-young-adults/ (Accessed: 1st October 2019).

Australian College of Nursing- Collegian (2019) The adolescent’s experience of cancer: An integrative literature review, Available at: https://www.collegianjournal.com/article/S1322-7696(18)30308-1/fulltext (Accessed: 12th May 2019).

Barakat, L. P. (2010) ‘Quality of life of adolescents with cancer: family risks and resources’, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2903513/, 8(63), pp. [Online]. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2903513/ (Accessed: 13th May 2019).

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