Life After Cancer in Adolescence and Young Adulthood

The Experience of Survivorship

Anne Grinyer

• Publisher: Routledge
• Year: 2009
• Print ISBN: 9780415477031
• eBook ISBN: 9781134022434
• Edition: 1
• Topic: Social Sciences
• Subtopic: Diseases & Allergies
• Index: Social Sciences

Adolescence and young adulthood is often a difficult enough time without serious illness. However, research has shown that cancer, and surviving cancer, at this age presents distinctive problems medically, socially and psychologically. This important work offers a glimpse into a previously under-researched area and contributes to a better understanding of the needs of young adults post cancer.

Focusing not only on the physical effects, but also the social, cognitive, emotional and physiological consequences of surviving cancer in young adulthood, Anne Grinyer draws directly upon data collected from young adults who have been treated for cancer. The book is structured around themes they raised such as fertility; life plans; identity; psychological effects and physical effects. These issues are drawn together in the final chapter and related to clinical and professional practice as well as current policy.

This book presents the voices of those who have lived through the experience of cancer in young adulthood, and links them to the theoretical and analytical literature. It will be of interest to professionals and researchers in nursing, social work, counselling and medicine as well as medical sociologists, young adults living with cancer and survivors of young adult cancer.

1 The late effects and long-term
consequences of survivorship

My last book based on research with young adults with cancer ended with a question about what happens next. Wolff (2007) claims that while cancer survivorship is increasing, inadequate resources result in the needs of survivors remaining largely unmet by health care providers, yet these needs may be many and varied. As Parsonnet says:

Adjustment to ‘life after cancer’ includes the adjustment to physical, emotional, cognitive, social, sexual and spiritual changes, many of which are unforeseen by individuals navigating the worlds of diagnosis and treatment. Late effects vary widely; some are determined by the specific cancer diagnosis and treatment, while others are more dependent upon demographic, personal or social characteristics.

(2007: 2)

Similarly, Stovall (2007) notes that the extent to which a survivor’s life is affected in the longer-term is dependent upon a number of variables that include family and cultural relationships, religious beliefs, the treatment received and the progression or resolution of the illness. However, two variables missing from both Stovall and Parsonnet’s (2007) observations are age and life stage. I have argued that cancer is both medically and experientially distinct in adolescence and young adulthood³ (Grinyer 2002a, 2007) thus all those challenges of survivorship raised by Parsonnet (2007) are likely to be exacerbated in this age group. According to Soliman and Agresta (2008) cancer in this age group is unique as it complicates the lives of young people at a period of constant change and as Levitt and Eshelman (2008) point out, the age at diagnosis will result in different fears, needs and requirements for information.⁴

During adolescence and young adulthood a cancer diagnosis will have profoundly disrupted the normal developmental trajectory and this is therefore likely to lead to specific effects on survivorship. It has also been established by Mor et al. (1994) that the psychosocial impact of cancer on younger patients is qualitatively different. Older patients may have fewer competing demands on their time and resources and their different expectations may mitigate the negative impact.

Adolescence and young adulthood is a transitional time of life when crucial decisions are made that shape a person’s future. It is also a time of turbulence and renegotiation when identities are being formed (Apter 2001). As a result the diagnosis of life-threatening illness may disrupt the life trajectory at a critical moment that can have long-lasting consequences that manifest differently than for other age groups.

As Neville says:

The survivor of teenage cancer faces many difficulties superimposed on the challenges of a normally tumultuous adolescent life. While research has described the long-term effect of teenage cancer on young adulthood, as survivors age, further enquiry into later stages of life is warranted.

(2007: 5, original emphasis)

Langeveld and Arbuckle (2008) say the period after treatment has finished can present additional anxieties as the reality of the situation becomes clear in the post-treatment phase. The longer-term consequences such as the impact on fertility and mortality may not have been processed during treatment and the loss of the relative security of the medical system that once enveloped them may have left the young survivor feeling insecure and unsupported. However, it is not only the psychosocial and emotional outcomes that differ in survivors of adolescent cancer; the aetiology may also be dissimilar to survivors in other age groups (Birch 2005).

So, do the life stage effects of adolescent and young adult cancers continue to shape their survivorship in the longer-term or are the effects mitigated by time? Levitt and Eshelman cite an American epidemiological study that has ‘provided volumes of data’ (2008: 169) on late effects. While they acknowledge that the results can be extrapolated in some circumstances to include the survivors of adolescent and young adult cancers they claim, like Neville (2007), that more data on this specific population are needed to understand how the life stage of adolescence affects survivorship and, by extension, to answer questions such as: What kind of support is needed after treatment is over? What does survivorship mean for an adolescent or a young adult who has been treated for a life-threatening illness? What are the long-term psychological and emotional consequences? How can the adolescent and young adult be prepared best to manage the challenges that will face them in their future?

The need for research on survivorship was articulated by staff with whom I worked during the research with their adolescent and young adult patients who were still in treatment. The health care workers expressed concerns about the long-term consequences that their patients may have little understanding of and for which they may be unprepared. Indeed, although the last phase of my research was primarily with adolescents and young adults receiving treatment at the time of participation, it also included a few young people not long out of treatment and there were indications from them that a level of ongoing anxiety had been generated by the illness. Gemma feared that every time she had a cold or sore throat it could herald a recurrence and Steven described how he would unthinkingly keep putting his hand on his neck checking for lumps while watching the television (Grinyer 2007).

Survivorship must be the goal of treatment and in no sense do I wish to pathologise survivors many of whom lead healthy and productive lives after their cancers. Nevertheless, questions – not only about the character and quality of that survivorship, but also of how the adolescents and young adults should be prepared for it – arose when talking to those involved in their long-term care. Alison, asked the following questions:

Is there anything we can do to help? Should there be some mechanism in place for health professionals or other support services to address these issues [such as] further malignancies. You know it is not at all uncommon for people to get second malignancies. I recently was talking to a young girl who was diagnosed with leukaemia at 14 or 15, who in her mid twenties got breast cancer … she had very high-dose chemotherapy and she had total body radiation, so the chances are this is a result [as] radiotherapy is carcinogenic itself so there’s always an increased risk of getting a further malignancy. Whether, if we gave people this information, would it make them unable to live their future lives in a normal way I don’t know. I can’t, because I’ve never really discussed it with survivors. I don’t know the answers to the questions. And whether, whether they could tell you, I don’t know. But I do think it’s something that we need to look at and need to explore.

(Alison: lead cancer nurse)

Alison continued by saying that it would be helpful to chart the kinds of challenges that the survivors experience long term in order to prepare them. For example, to develop cognitive problems without knowing why could be extremely distressing. Alison also mentioned that marital breakdown amongst long-term survivors appeared to occur frequently, but whether this was causally related to the illness remained unclear. Alison remembered a surviving patient who had got a first class degree but who could not find a job and others who had got jobs but who, as a direct result of the illness, had failed to get a mortgage or insurance despite a good salary. While Alison acknowledged that giving information to prepare young people for the multiplicity of long-term effects might be desirable, she added that ‘currently, as far as we know, that information is not available … so we cannot point somebody in the [right] direction, even if they want to know.’

So we can see that previous work in the area of teenage cancers has identified that the age and life stage of adolescence and young adulthood (15–25) presents distinct problems (Eden 2006, Grinyer 2007, 2002a, Grinyer and Thomas 2001, Morgan and Hubber 2004) but that while there is a suspicion that the life stage effect will continue to impact on survivorship there is little systematic data to reinforce this informal observation. My central question is, therefore: ‘how is long-term survivorship experienced after adolescent and young adult cancer?’ Through asking this question of long-term survivors, the issue of whether the life stage effects at diagnosis and treatment persist through survivorship, should become clearer.

However, there is a problem of definition – when does childhood end and adolescence begin and when does young adulthood end and when is maturity reached? The answers to these questions may differ medically and socially and between individual patients, thus drawing firm boundaries presents problems, yet some definition has to be reached. So, for the purposes of this research my definition of a young adult cancer patient is someone diagnosed with and treated for cancer between the ages of 14 and 25.

A working definition of survivorship also needs to be reached. That offered by the National Coalition for Cancer Survivorship is: ‘From the time of discovery and for the balance of life, an individual diagnosed with cancer is a survivor’ (in Keene et al. 2000: 1). Little et al. offer the following classification:

Oncologists count survival as beginning at the time of diagnosis for the purposes of calculating statistics. To them survival means something like ‘living at time x’, and the survival can then be ‘disease-free’ or ‘with recurrence’ … Some support groups insist that everyone living after a cancer diagnosis is a survivor.

(2000: 501)

Aziz (2007) cites Mullan’s interpretation of survivorship which likens the stages to the seasons of the year: ‘acute’ being the initial stages of diagnosis through to the end of treatment; ‘extended’ being the post-treatment remission period dominated by regular follow-up and possible intermittent treatment, and finally ‘permanent survival’, which does not occur at a single moment but which evolves from an extended period of disease-free survival. Aziz (2007) defines long-term survival as 5 or more years beyond the diagnosis of the primary disease.

However, ‘survivors’ themselves use their own definitions, for example one of four ‘survivors’ speaking at a conference on Teenage and Young Adult Cancer Medicine said ‘I’m not a survivor, I’m just me’ (Contact 2007: 5). While survivorship may well begin at diagnosis, this study is on late effects and long-term consequences, thus for the purpose of this research I have recruited survivors who are more than four years out of the treatment period.

Some definition of late effects also needs to be reached. According to Levitt and Eshelman: Late effects are defined as the physical, psychological, social and/or economic chronic or late occurring consequences of cancer treatment persisting or occurring at least 5 years from diagnosis (2008: 169).

These authors continue by pointing out that clinically relevant morbidity can vary from that evident at the end of treatment to sequelae that do not manifest until many years later. My participants range in time since diagnosis from four years, to more than 40 years, thus allowing us to enquire into the later stages of life specified as necessary by Neville (2007).

However, there is a distinction between late effects and long-term effects. Aziz defines late effects as ‘unrecognised toxicities that are absent or sub-clinical at the end of therapy and become manifest later’, while he says that long-term effects ‘refer to any side effects or complications of the treatment for which a cancer patient must compensate’ (2007: 55). Long-term effects may also be regarded as ‘persistent’ in that they begin during the treatment phase and continue beyond it while late effects, in contrast, appear months or years after the completion of treatment. However, Aziz continues by saying that even amongst experts there is disagreement about whether cognitive problems, fatigue, lymphoedema and peripheral neuropathy are late effects or long-term effects. However, my participants tended not to make such distinctions when discussing the long-term/late effects they experience, thus I use their definitions rather than a strictly clinical classification of the longer-term impacts.

That survivorship in this age group is a concern is evidenced by a special ‘Survivors’ issue of the publication Contact (2007), a magazine devoted to issues relating to cancer in children and young people. In this edition young people address the issues that are important to them such as the sadness felt for the friends who did not survive, and the concomitant burden to do well. As one young woman, Clare, said ‘The main guilt comes on what for many of us would be a normal bad day and remembering those who do not experience them. It is horrendous to see people dying, there is pressure to do well, be positive at all times, at times that pressure can drive you mad’ (2007: 5). However, survivorship was not the main identity of the young people whose other achievements outweighed those of surviving their cancer with the implication that they did not want to become ‘professional survivors’.

In the same edition of Contact Sophie Broere says the following about her diagnosis at 17 with Hodgkin’s lymphoma.

After a few years, once I felt physically strong and able to trust my body again, I was able to deal with the suppressed emotions resulting from my experience. I cried, and allowed myself to be angry for the first time. Before then I had always felt that I had to be happy and positive, but underlying this, there was a lot of sadness, which I did not want to deal with, as I was afraid of the powerful emotions it might bring out.

(2007: 10)

This contribution echoes Clare’s about the pressure to be positive, whether this and Sophie’s suppressed emotions would have been experienced in the same way had she been diagnosed during earlier childhood is unclear, but given what we know about developmental issues and the psychology of adolescence it seems that a younger child may be left with a different emotional legacy (Grinyer 2002, 2007).

Alison, lead cancer nurse, suggested that viewing the ongoing emotional effects as ‘Post Traumatic Stress’ (PTS) might be a useful way to interpret the survivors’ experiences. Clearly any measure that limits, or identifies and manages PTS effectively, would have longer-term benefits.

While we know that some adolescent and young adult cancers and or their treatments can lead to secondary cancer or treatment-related cancer in later life, it seems that the experience of having cancer a second time is worse because of the earlier illness. In an interview with Carol, a Macmillan nurse, she said the following when talking about a man in his 40s who developed another treatment-related cancer:

They think that the tonsil cancer was caused by the treatment that he had for his testicular cancer and that it wasn’t a secondary … now he was 40 he still found it hard to talk about how he was feeling … it brought back all of how he’d felt, that sense of kind of helplessness and fear. He told me it just made him feel just as he did when he was a young man … They do react differently [to having it a second time] , definitely … I can draw on the experience of some of the women who I’ve met with breast cancer, having had treatment for Hodgkin’s as young adults. They feel that life’s dealt them a really hard blow … they say it’s not fair they’ve already had treatment, it’s not fair … why is this happening again?

(Carol: Macmillan nurse)

This of course also raises the question of how and when adolescent and young adult cancer patients should be warned about late effects. But even without any prior warning cancer survivors can interpret the symptoms of minor illnesses as sinister – such concerns while often unfounded nevertheless need an understanding response from health professionals. As Carol pointed out under such circumstances the GP may be bypassed in favour of what may be perceived as ‘a more sympathetic’ hearing:

Yes, and again you know we get women now ringing up years after their treatment … no matter how far away the treatment is, they do interpret it all back to their cancer experience. And you know they’re not hypochondriacs, and GPs should be more aware of the health concerns … sometimes they do bypass the GP surgery because of that very attitude.

(Carol: Macmillan nurse)

So what kind of follow-up or support service would be valued? This is one of the questions addressed in the following chapters through an attempt to understand how long-term follow-up clinics are experienced and what happens after clinical follow-up terminates – is the cessation a relief that signifies the ‘all clear’ or does it leave the survivor feeling insecure and without support? There is also the question of why some survivors react in a much more positive way than others. Is this primarily related to their disease type, treatment regime and physical legacy – or does the quality of the experience and preparation for survivorship shape the outcome, and what is the role of family and the informal support network?

The evidence thus far seems to suggest that there are a number of late and long-term effects that survivors of adolescent cancer have to face, some of them – particularly the more clinically related – are better understood, but the psychosocial and emotional ones can only be guessed at on the basis of anecdotal evidence. Even those effects that are well understood, still leave professionals with doubts about how they can best be presented to the young people at the time of diagnosis and treatment. For example: how much should be divulged, when should it be discussed, what support is needed both at the time and in the longer-term, does long-term, ongoing support prevent the survivor from moving on and shape their identity in a negative way? If the appropriate support and preparation for survivorship is given during treatment, might this lessen the need for it in the longer-term?

It is one of the aims of my research to answer these questions and to identify what shapes survivorship in order that the findings may assist in the provision of support and care to maximise a good outcome. However, Levitt and Eshelman (2008) claim that late effects studies have suffered from methodological pitfalls. The more quantitative studies have been affected by differing control groups, selection bias and measurement variances, while they suggest that the quality of life research suffers from inconsistencies in addition to these problems. I hope that I have avoided the pitfalls through the use of in-depth interviews with participants recruited through a variety of approaches, research sites and sampling techniques (see methods appendix) I have built up a substantial database of detailed accounts from a wide range of survivors whose age ranges, illness histories and treatment regimes allow us to take not only an in-depth approach but also a longer view of the changing nature of survivorship amongst a disparate group, many of whom only have their cancer experience in common.

The empirical chapters rely heavily on extensive quotations from the interviews, each participant’s name – real or chosen – is in brackets at the end of their quote, and in addition the number of years that have elapsed since their diagnosis is included. If we are to understand whether and how survivorship changes and develops over an extended period it may be helpful to have such a detail readily available. For further details, a summary of participants is included at the beginning of this volume.

So we can see through the concerns of the health professionals in my own research and from the accounts offered through the special edition of Contact that survivorship carries with it a variety of challenges. Academic and medical literature, largely from the USA, charts many late and long-term effects; however, the studies on which they are based tend to be quantitative and biomedical rather than qualitative and psychosocial. Nevertheless, their findings are relevant to this volume as, while expressed in different terms, they chart many of the difficulties encountered by the young adult survivors and it is to them that we now turn.

Late and long-term effects studies

To the person seeking information on the survivorship of adolescent cancers, a trawl of the Internet through the input of key words may look promising. For example, the paper ‘Posttraumatic Growth in Adolesc...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Acknowledgements
• Participants
• 1 The late effects and long-term consequences of survivorship
• 2 Case studies
• 3 The physical legacy and the fear of recurrence
• 4 Long-term follow-up and the need for ongoing support
• 5 The emotional legacy: how it changes philosophy and perspective
• 6 Survivorship identity, the resistance to victimhood and the positive outcomes
• 7 The effect on life plans and the long-term financial impact
• 8 The impact on fertility
• 9 Implications for policy and practice
• Appendix
• Notes
• References