Replenishment and Renewal in Patients
with Extremity Tumours
An ESUN Article
Norman Lindsay first published The Magic Pudding in 1918, and it delighted children with the escapades of rude and precocious pudding that regenerated endlessly after each meal, making a highly desirable pudding with which to consort. To replenish means "to supply fully, to fill with inspiration or power; to nourish or to fill, build up again; to make good: replace (Webster Dictionary)."
Treatment of sarcoma of the limbs often involves surgical intervention. Unfortunately, unlike the magic pudding, human tissue and bones do not magically reappear. So the quality of life for those affected by sarcoma is complex. If we are to aim to both replenish and renew, the skill of the surgeon and the variety of surgical options that are available with limb sparing surgery, as opposed to amputation, in the treatment of sarcomas of the lower limbs, is paramount.
Quality of Life is a broad and encompassing term that can be used in a general sense or in the case of cancer care. In the article "Advances in How Clinical Nurses Can Evaluate and Improve Quality of Life for Individuals With Cancer," the authors divide quality of life into four categories that can be used to explore how individuals perceive that their lives have been altered (King, 2006). These categories include:
- physical well being (functional activity, nutrition, stamina, fertility),
- psychological well being (anxiety/depression, fear of recurrence, survival, changed priorities),
- social well being (appearance, relationship, leisure, finances),
- and spiritual well being (hope, inner strength/beliefs).
As individuals, what is important to us will vary enormously: Ability to participate in sport will be paramount to some, while enjoying food will be more important to others. Before the process of replenishment can begin, an understanding of each individual’s starting point is of essence. Presuming that we understand the experience of another is a misconception and may lead to the application of our own external value system.
It is important to facilitate the process in which patients explore and understand what they value most, allowing them to build on their strengths in order to gain the optimum quality of life possible. It is the role of the nurse or health care worker to take into consideration the holistic care of the patients, then to break down perceptions of quality of life into the four main categories in order to best target support services for each patient. To do this, the relationship between the nurse and patient must be developed. This takes time, skill and patience.
How then does the skill of the surgeon relate to survivors of extremity tumours, in terms of quality of life, taking into account the age of onset of disease? The historically poor prognosis of Ewing’s sarcoma and osteosarcoma has improved with neoadjuvant chemotherapy and better diagnostic imaging, enabling higher definition of tumour extent. Today, planning for adequate surgical margins often includes limb sparing resection, and amputation is reserved for cases in which wide excision would not produce a clear margin or would render the limb useless.
The role of reconstructive surgery, as compared to amputation, is to produce a better functional outcome with better cosmetic results, reducing as far as possible physical limitations, while maintaining the main oncologic criteria of the wide margin. Arthrodesis, oseoarticular and intercalary allograph, endoprosthetic arthroplasty and composite allograft/prosthesis arthroplasty are some of the surgical techniques employed (Nagarajan et al, 2002). Allograft bone is obtained from deceased donors, as compared to autogenous bone, which is bone that is harvested from the patient’s hip or fibula.
Reconstruction in the paediatric group involves an added set of criteria, as these patients are both skeletally and psychologically immature. Whilst the magic pudding chanted, "Eat away, chew away, munch and bolt and guzzle. Never leave the table till you are full up to the muzzle," repeated surgical intervention is less than optimal.
If the aim of reconstruction, in the process of renewal, is to improve functional outcome, then we must also take into account psychological factors as physical ability alone is not a measure of functional outcome (Nagarajan et al, 2002). The Toronto Extremity Salvage Score divides functional outcome into two categories: disability, referring to the inability to perform or restriction in performing normal activities, and handicap, referring to the inability to assume or limitation in assuming a role that is normal for that person (Davis et al, 1996).
If the aim is to limit handicap due to disease and treatment, it is here that the role of the nurse or health care worker supports the surgeon by understanding what is normal for each individual, "normal" being a highly subjective term. As survivorship increases, we endeavour to have a better understanding of the complex nature of the quality of life complexities that are inexorably intertwined with physical ability in order to produce the best possible functional outcome. Quality of life must be seen as a multidimensional construct.
References
1. Cynthia R King, PhD, MSN,RN,FAAN: Advances in How Clinical Nurses Can Evaluate and Improve Quality of Life for Individuals With Cancer: Oncology Nurses Forum-Vol 33. No 1, Supplement 2006
2. Rajaram Nagarajan, Joseph P Neglia, Denis R. Clohisy and Leslie L, Robinson:Limb Salvage and Amputation in Survivors of Paediatric Lower Extremity Bone Tumours: What Are the Long Term Implications?: Journal of Clinical Oncology, Vol 20,No 22, 2002
3. Davis AM, Wright JG, Williams JL, et al: Development of a measure of physical function for patients with bone and soft tissue sarcoma. Qual Life Res 5:508-516, 1996
4. Davis AM , Devlin M, Griffin AM, et al: Functional outcome in amputation versus limb sparing of patients with lower extremity sarcoma: A matched case control study. Arch Phys med rehabil 80:615-618, 1999
5. The Magic Pudding: Norman Lindsay: 1918
6. Ferrell BR, Dow KH, Leigh S, Ly J & Gulasekaram P:Quality of life in Long -Term Cancer Survivors: Oncology Nursing Forum,22 p 916,1995
V6N3 ESUN Copyright © 2009 Liddy Shriver Sarcoma Initiative.