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2 Total Neoadjuvant Therapy (TNT) in Rectal Cancer; Where Now, Where Next? 59
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1200/jco.21.01667.
Quality of Life and Survivorship
https://t.me/med1917
in Extended Pelvic Resection
for Advanced and Recurrent
Malignancy
Deena Harji and Claire Taylor
Abstract
This abstract offers a succinct examination of survivorship and quality of life
(QoL) outcomes in patients undergoing extended pelvic resection for advanced
or recurrent malignancy. Despite the procedure’s complexity and potential for
postoperative challenges, studies consistently demonstrate improvements in pain
management, mobility, and overall QoL post-surgery. Survivorship considerations encompass long-term oncological outcomes, surveillance strategies, and
psychosocial support. Personalized care and multidisciplinary approaches are
essential for optimizing survivorship and QoL in this patient cohort.
Keywords
Quality of life•Survivorship•Extended pelvic resection•Advanced
•
malignancy
Functional outcomes•Long-term follow-up•Health-related quality of life
Recurrent malignancy•Pelvic surgery•Oncological outcomes
3
•
Key Points
•
Treatment decisions in patients considering pelvic exenteration should align to
patient priorities and include discussion of quality of life and survivorship
D. Harji (B) · C. Taylor
University of Leeds, Leeds, UK
e-mail: deena.harji@nhs.net
D. Harji
Department of Colorectal Surgery, Manchester University NHS Foundation Trust, Manchester,
UK
C. Taylor
Department of Cancer, St Mark’s Hospital, London, UK
© The Author(s), under exclusive license to Springer Nature Switzerland AG 2024
M. Evans e t al. (eds.), Coloproctology, https://doi.org/10.1007/978-3-031-59630-8_3
61
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•
Pelvic exenteration results in a reduction in all quality of life domains that is most
marked in the early post-operative phase, but some adverse impact is likely to
persist throughout life
•
After-care models need to be carefully considered and should focus on physical,
emotional and psychological recovery
•
Quality of life should be measured regularly after surgery using validated, diseasespecific metrics to allow early recognition of problems so that additional support
can be provided
•
Survivorshipcare initiatives should focus on providing a patient-centred approach
to care across many years.
3.1 Introduction
Extended pelvic resection for locally advanced and recurrent rectal cancer is
potentially life-changing surgery. It is frequently associated with high rates of perioperative and longer term morbidity that negatively impacts upon quality of life
(QoL). Advances in neoadjuvant treatments and more radical surgical resection
have resulted in more patients surviving longer, this in turn has resulted in more
patients living with the impact of their treatment. Consequently, there has been
recent emphasis on the longer-term impact on QoL and survivorship [1, 2]. The
terms QoL and survivorship are complex constructs and despite their distinct definitions, there is significant overlap between them. The World Health Organisation
defines QoL as an individual’s perception of their position in life in the context
of the culture and value systems in which they live and in relation to their goals,
expectations, standards and concerns. The National Cancer Institute outlines the
definition of a cancer survivor as ‘An individual is considered a cancer survivor
from the time of diagnosis, through the balance of his or her life’. Understanding
and integrating these constructs into the holistic approach to patients considering
and undergoing pelvic exenteration, promotes the use of a patient-centred approach
and moves away from the traditional biopsychosocial model, which focuses on
clinical and oncological metrics. In the pre-operative setting, this can promote
the principles of shared decision-making that allows the opportunity to balance
surgery and its associated risks with QoL, survivorship and personal priorities. In
the post-operative period, this approach can be used for enhanced surveillance and
monitoring of post-operative symptoms, complications and QoL, whilst ensuring
good quality survivorship.
3.2 Quality of Life Outcomes
Extended pelvic resection can affect several global domains of QoL, including
physical function, psychological function, social and role function, sexual function, occupational and financial impact, body image and general health [3, 4].
Given the anatomical complexity of the pelvis, the heterogenous nature of locally
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advanced and recurrent rectal cancer and the personalised nature of surgery, there
are several pelvic-specific symptoms which can impact on overall QoL. Understanding the broad spectrum of QoL domains and symptoms that can be affected
following extended pelvic resection is important to guide pre-operative shared
decision-making. Pre-operative preparedness aligned to patients priorities and QoL
domains is essential in mitigating the significant psychological and physical impact
of pelvic exenteration [5]. A lack of psychological preparedness pre-operatively
is linked with post-operative dissatisfaction and decisional regret [6]. Minimising
this through thorough pre-operative counselling is important to ensure good quality
survivorship and QoL outcomes.
3.2.1 Physical Function
Physical function is defined as ‘the ability to carry out various activities that require
physical capability, ranging from self-care, including basic activities of daily living, to more vigorous activities that require increasing degrees of mobility, strength
or endurance’ [7]. Physical function declines in the initial post-operative phase in
patients undergoing pelvic exenteration for locally advanced and recurrent rectal
cancer. This decline is most marked in the initial post-operative phase, and persists
for up to 6 months, with a gradual recovery towards baseline [8]. However, it is
important to note, that baseline levels of physical function are not reached, with
the degree of recovery at 12 months dictating long-term function.
3.2.2 Psychological Function
Psychological function is defined as ‘the ability to achieve his or her goals
within him or herself and the external environment. It includes an individual’s
behaviour, emotion, social skills, and overall mental health’ [9]. Psychological
function remains relatively stable in patients undergoing pelvic exenteration. The
limited available evidence suggests the psychological reserve of patients undergoing major exenterative surgery is greater than the general population [10]. This
suggests a degree of pre-operative psychological preparedness to withstand and
survive the impact of surgery. There are, however, several subgroups, who are at
risk of psychological dysfunction in the immediate perioperative period, including
younger patients [11], patients experiencing significant post-operative morbidity
[12] and patients demonstrating neurotic personality traits [13]. It is important to
recognise these distinct cohorts and provide enhanced psychological support to
ensure appropriate and healthy adaptation to their post-operative physical status.
Post-operative psychological dysfunction centres around the fear of recurrence or
re-recurrence, with anxiety worsening in the run up to post-operative surveillance
scans [14], with the regularity of scans impacting on the patients’ ability to develop
long-term plans [14].
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3.2.3 Role Function
Role function is defined ‘as involvement in life situations related to family life,
partner relationship, household chores, work for pay, studies, social life (including
interactions with friends), leisure time activities, community involvement (including volunteer work) and everyday living activities’ [15]. It is unsurprising, that the
trajectory of role function mimics the trajectory of physical function, given the
intertwined nature of these two domains of QoL. Role functioning generally deteriorates in the immediate post-operative period, with gradual improvement towards
baseline by six months. A similar trajectory is observed in the social aspects
of role functioning, with a reduction in social activities observed over the first
3–6 months post-operatively, following which there is a resumption of baseline
activity. The complex relationship between physical function and role function,
alongside, its potential impact on psychological function should be acknowledged
pre-operatively so that potential changes in role function and social status in the
post-operative phase can be planned for and mitigated against.
3.2.4 Sexual Function
Sexual functioning is defined by the ‘absence of difficulty moving through the
stages of sexual desire, arousal, and orgasm, as well as subjective satisfaction
with the frequency and outcome of individual and partnered sexual behaviour’
[16]. The majority of the literature regarding sexual function in pelvic exenteration is taken from the gynaecological literature, with reports of significant decline
in post-operative sexual function, sexual pleasure, high rates of discomfort during
sexual intercourse and a reduction in sexual activity [8]. For patients, specifically
undergoing pelvic exenteration for locally advanced and recurrent rectal cancer, the
evidence base is limited but emerging. McCarthy et al. reported on post-operative
sexual function in patients undergoing pelvic exenteration and sacrectomy for
locally advanced or recurrent rectal cancer. At a median of 28 months following surgery, there were moderate levels of sexual dysfunction in male patients
and severe sexual dysfunction reported by female patients, with no observed
differences between high and low sacrectomy [17]. Women undergoing pelvic
exenteration with en bloc partial vaginectomy and flap reconstruction generally
report poor sexual function with variable use of the neovagina [18, 19].
There is a complex interplay between sexual function, body image and psychological function, that should be sensitively and considerately explored in the
post-operative period. The importance of sexuality resurfaces in the post-operative
period and forms an important aspect of survivorship. Following surgery, the focus
should be on increasing sexual confidence, resuming intimacy, and establishing
post-operative sexual function.
Male sexual dysfunction can include erectile or ejaculatory dysfunction. This is
due to the combination of pelvic surgery and radiotherapy leading to hypogastric nerve dysfunction. In patients with sacral nerve involvement, the risk of
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post-operative sexual dysfunction increases. There is emerging evidence, that the
preservation of at least one S3 nerve root is critical for sexual function. If bilateral
S3 nerve roots are sacrificed, erectile dysfunction is inevitable. There are a range of
treatment options available to manage post-operative erectile dysfunction, including vacuum erection devices [20]. Patients should be referred to a urologist with
expertise in post-operative sexual dysfunction.
The causes of female sexual dysfunction are multifactorial. Vaginal fragility
or stenosis from pelvic radiotherapy can cause vaginal wall thinning, adhesions,
atrophy and fibrosis in the longer term [21]. Post-operative sexual activity following a partial vaginectomy and neovaginal reconstruction is variable, due to
post-operative pain, stenosis and reduced sensitivity [22, 23]. It is important to
note, however, that despite the presence of sexual dysfunction, the overall global
QoL reported by women post-operatively is good [22, 23]. Topical hormones,
vaginal moisturisers and water-based lubrication may be of value in improving post-operative sexual function. Referral for specialist women’s health and
psychosexual support should be offered as appropriate.
3.2.5 Body Image
Body image is defined as ‘the assessment of both positive and negative emotion for
one’s own body parts and their characteristics by himself or herself’ [24]. There is
a significant impact on body image in the first post-operative year following pelvic
exenteration. This is unsurprising given the invasive and radical nature of extended
resection for advanced and recurrent rectal cancer, that frequently includes the construction of a colostomy ± urostomy, bony resection including sacrectomy, vascular
resection, nerve resection including sciatic and femoral nerve resection, and flap
reconstruction. Body image QoL scores are demonstrably worse at 3–6 months
post-operatively. Following this period of adjustment there is a distinct period of
acceptance, which correlates with the improvement in overall body image QoL
scores at 6–12 months post-operatively. It is important to recognise the complex relationship between poor body image, sexual dysfunction and psychological
impact, with an inverse relationship demonstrated between body image/sexual dysfunction and psychological impact. It is, therefore, important to screen for any
issues related to body image and sexual dysfunction in the post-operative period,
and appropriately address them, through physical and psychological interventions,
to help improve QoL specific to these domains.
3.2.6 Occupational and Financial Impact
There is limited evidence about the occupational and financial impact on patients
undergoing pelvic exenteration specifically for advanced and recurrent rectal cancer. However, when reported, patients report a high financial burden, due to the
impact on their ability to work as a result of the physical limitations imposed by
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surgery [25]. This is compounded by uncertainty regarding potential future unemployment, delayed return to work and possible change in role. Pre-operatively,
patients in employment, express significant distress regarding financial stability.
Post-operatively, scores related to this domain improve and eventually stabilise.
This is most likely observed secondary to the phenomenon of ‘adaptive survivorship’ and adjustment, which ‘resets’ QoL to current circumstances. Pre-operative
anxiety regarding future financial stability should be appropriately explored with
signposting of available help and resources.
3.2.7 Global QoL and General Health
Overall general health and global QoL deteriorates following pelvic exenteration,
following the same trajectory as all other QoL domains. Given the significant
morbidity profile associated with extended resections and pelvic exenteration, it
is important to acknowledge the deterioration in overall QoL and general health
is far greater in patients who experience post-operative complications. However,
the subsequent trajectory and gradient of QoL recovery is greater than patients
without complications [12]. Other factors, that are associated with poor global
QoL include, female patients, total pelvic exenteration, as opposed to partial,
and patients with a positive surgical margin [26]. Ensuring patients with these
clinical characteristics are appropriately highlighted and supported is essential in
mitigating any impact on QoL overall and ensuring expedient recovery.
3.2.8 QoL Assessment
The assessment of QoL in locally advanced and recurrent rectal cancer is variably
reported in the current literature, using several different patient-reported outcome
measures (PROMS) and at variable time points in the post-operative period [3].
The most commonly used PROMS in this cohort are the European Organisation European Organisation for Research and Treatment of Cancer (EORTC)
QLQ-C30, EORTC CR38 and CR29 (colorectal-specific modules) and the Functional Assessment of Cancer Therapy—Colorectal Measure (FACT-C) [27]. These
measures were exclusively developed for patients with a diagnosis of primary colorectal cancer, with little or no representation of patients with advanced pelvic
malignancy. One of the central tenants to QoL assessment is to ensure content
validity, with constructs relevant to the target population. This is often best represented through the use of disease-specific measures, designed with the target
population in mind that are more clinically and statistically sensitive than generic
measures. Currently, there are no disease-specific PROMs for patients undergoing pelvic exenteration. However, there is ongoing work jointly between PelvEx
and the EORTC to develop a procedure-specific PROM module for this cohort for
patients. For locally recurrent rectal cancer, the LRRC-QoL is the only validated
disease-specific measure available for use in this group of patients [28]. Currently,
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it is validated for use in English-speaking populations, with ongoing, cross-cultural
adaptation and validation to expand its utility internationally. Robust measurement of QoL outcomes, using disease-specific measures, is essential to ensuring
meaningful outcome assessment in this complex cohort of patients. In view of
the limited disease-specific measures currently available, it is recommended to use
the LRRC-QoL to assess QoL in patients with locally recurrent rectal cancer. For
patients with locally advanced rectal cancer, the EORTC CR29 or FACT-C may
be used, whilst recognising its limitations, until there is a disease-specific measure
available through the PelvEx-EORTC collaboration.
3.3 Cancer Survivorship
As survival for patients with locally advanced and recurrent rectal cancer has
improved, there is a recognition of the need for dedicated support services. It
is estimated that a quarter of patients treated for cancer face poor health and disability, with a third of patients reporting five or more unmet needs at the end of
their cancer treatment, with the most frequently reported being fear of recurrence
and psychological needs [29]. In the United Kingdom (UK), the National Institute
of Cancer Survivorship was formed to address this shortfall in the aftercare of cancer survivors. This collaborative effort was formed between the UK Department
of Health, Macmillan Cancer Support and NHS Improvement. The ensuing seven
work streams focused on issues such as assessment and care planning, work and
finance, self-management and managing the late consequences of cancer and its
treatment. Following this, widespread adoption of a needs assessment model was
advocated: a Holistic Needs Assessment (HNA) designed to meet the physical,
psychosocial, and practical concerns experienced by people living with cancer.
The HNA became embedded into England’s Long-term plan for the NHS as a
national metric with the aim of ensuring that everyone diagnosed with cancer is
offered the opportunity to talk about their physical, emotional, social, and spiritual
needs and concerns. The HNA is essentially a conversation through which issues
are shared, needs prioritised and then appropriate management options explored. It
can help build a therapeutic relationship between the healthcare professional and
patient as the plan of care develops [30]. Crucially this care plan is ‘owned’ by
the patient, made visible to the multidisciplinary team, and valued within a service
that supports further clinician-led review. It is advised that individuals diagnosed
with locally advanced or recurrent rectal cancer approaching an extended pelvic
resection are offered an HNA following diagnosis and at any other key transition
points [31, 32]. The HNA constitutes one part of a framework of key interventions
aimed at supporting people to self-manage the impact cancer has on their lives.
These interventions are embedded within a personalised model of care, with the
aspiration that each person’s needs are individually assessed, documented and then
communicated as follows: information received from their holistic needs assessment (HNA) and treatment summary (conducted in secondary care), inform the
cancer care review (completed in primary care) which is then supplemented with
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a social care prescription (a non-clinical assessment which provides further social
support). All of these interventions support healthcare professionals to focus on the
patient priorities whilst recovering from cancer treatment and should be considered
integral to the after-care provided following an extended pelvic resection. Whilst
the personalised care model is purported to support improved quality of life and
outcomes for people living with and beyond cancer [33], research evidence has
yet to substantiate this. Nevertheless, the HNA, treatment summary, cancer care
review and health and well-being information and support, are still regarded as
key indicators in the provision of high-quality cancer care.
3.4 After-Care Models
After-care models need to be carefully considered for patients following extended
resection for locally advanced and recurrent rectal cancer. Recovery is multidimensional, with focus required on physical, psychological and emotional recovery. This
patient cohort will face physical changes in bodily function and form, along with
persisting physical limitations engendered by these changes, such as pain, fatigue
and altered mobility. Adjustments include a new permanent bowel and often a urinary stoma, significant scarring and altered sensations plus loss of sexual function
and fertility. Psychological recovery needs to address the uncertainty regarding
about future health and role function. Ongoing psychological dysfunction and distress can lead to a loss of embodiment [34], confidence [35] and even a loss of
self [36].
The magnitude of exenterative surgery is such that post-operatively patients
will experience occasional despair, express decisional regret [37] and feel doubtful
regarding ‘new’ self-identity and future life. After-care models need to recognise
this ‘psychological lability’, that includes feelings of delight regarding a cancer
free status, but also disappointment not to be “free of cancer,” [38]. Generic
psychosocial interventions include providing tailored information to provide realistic expectations about treatment and its consequences, and a range of emotional
and practical support proposals. The multidisciplinary team’s ongoing support in
patient’s recovery is essential [39] to provide accessible contact points and a clear
plan of support, including agreed follow-up consultations, to avoid the sense of
abandonment and associated uncertainty many cancer survivors describe [40]. The
support network needs to be as wide as possible including any onward specialist
referrals, informal caregivers and peer support, as well connecting up with primary
care.
Specialist psycho-oncology input may help individuals recalibrate and reframe
their lives more positively and manage associate distress [41]. Techniques including mindfulness, meaning-oriented psychotherapeutic interventions and Acceptance and Commitment Therapy (ACT) may be usefully employed.
Post-operative recovery does not follow a linear trajectory, therefore it is important to orientate patients to individual milestones and person-centred goals to work
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to, in the short- and medium-term. Goals include achieving independence in certain tasks, resuming a key hobby, or reaching a target walking distance. Whilst a
protracted recovery lasting many months should be expected [26] it can be helpful
to prepare people for around three months of acute stage of recovery, followed
by another three to six months with a slower pace of healing until full restoration
of energy and stamina. This correlates with the QoL trajectories observed following pelvic exenteration across all domains [8]. Post-operative recovery following
pelvic exenteration for locally advanced or recurrent rectal cancer is complex
and must take into the account the anatomical complexity of the resection undertaken, coupled with any additional oncological treatments and any post-operative
complications experienced. There is a complex interplay between post-operative
complications and the impact on physical and psychological function, with an
initial adverse impact during the acute post-operative setting, followed by an
improvement in the magnitude of psychological recovery coinciding with resolution of the complication [12]. This should be appropriately considered and
acknowledged within the personalised after-care models developed for individual patients. The long-term sequalae of pelvic exenteration on recovery, QoL and
survivorship is largely unknown, with limited long-term (5-year data). The current
limited data, consisting of 28 patients out of a total cohort of 287, suggests longterm QoL remains stable once a peak is reached at 12 months. However, this must
be cautiously interpreted, given the small number of survivors, and the inherent
bias of positive outcome reporting associated with this.
3.5 Symptom Management
Pelvic exenteration can lead to the development of a broad-based spectrum of
symptoms, ranging from general health symptoms, such as fatigue, loss of appetite,
and nausea to more specific pelvic symptoms, such as urinary and gastrointestinal
symptoms [42]. There are also a cohort of complex symptoms that are specific to
exenterative surgery, including lower limb symptoms and empty pelvis syndrome.
It is essential that specialist, multidisciplinary teams, with expertise in pelvic exenteration and its’ consequences appropriately diagnose, assess and manage any
arising symptoms in the post-operative period [43].
3.6 Pain
Post-operative pain is common following pelvic exenteration, with reports of shortterm pain in 30–40% of patients following resection, which often requires the
use of opiate analgesia. There are reports of chronic pain amongst long-term
survivors, however, the incidence of this is poorly reported within the literature
[44]. Patients at high risk of developing chronic pain, include, those presenting
with pre-operative pain, undergoing a total pelvic exenteration, bony or nerve
resection [45]. The commonest analgesic regime used in this cohort of patients
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