Living well with Lymphoedema Norah Kyne, MISCP, CDT Therapist

University Hospital Galway

GUH Cancer Centre Annual Report 2012 Breast Medical Oncology Urological Radiation Oncology Upper GI Cancer Nursing Colorectal Palliative Medicine Skin Cancer Research Lung and cardiothoracic Education and Training Head and Neck Cancer Charity Support Endocrine Stem Cell Unit Haematological Clinical Trials Radiology Pathology

Cancer and/or Neoplastic Diagnosis recorded 2012 Gastrointestinal 363 Breast 860 Genitourinary 964 Dermatology 1859 Gynaecologic 96 Lung and mediastinum 155 Head and Neck 126 Haematolymphoid 330 Bone and soft tissue 67 Other 84

Physiotherapy management Surgery - pre-operative as available, deep breathing exercises, anti – dvt exs, posture, range of motion, scar management Chemotherapy – management of fatigue, graduated exercise programme Radiation – range of motion, decreased skin mobility Rehabilitation - depending on diagnosis Lymphoedema management - based on presentation of lymphoedema

Scar impact

Scar management Location : potential barrier for lymphatic drainage does it limit joint mobility Treatment (2-3 weeks post surgery as per Doctor’s protocol) Mobilization Prevent adherence and hypertrophy Scar products eg mepiform(silicon) Foam (swell spot) Kinesotape (post 4 weeks/no radiation )

Cording/Axillary Web

Causes Interruption to lymphatic vessels during biopsy or lymph node dissection - fibrosiss Incidence : around 19% Treatment : Stretching and flexibility exercises Manual therapy

Definition of lymphoedema Lymphoedema is the accumulation of protein rich fluid in tissues with inadequate lymphatic drainage. National Lymphoedema Network (May 2012)

What can cause lymphoedema after cancer ? Insult to the lymphatic system following surgery and/or radiotherapy Extent of surgery Wound infection after surgery BMI > 26

L Incidence of breast cancer in Ireland from Females : 2,767 Males : 22 Arm lymphoedema 24-67% Breast lymphoedema 20-40% Trunk lymphoedema Most common presentations with secondary lymphoedema Upper Limb

Swelling in the arm is common, but the breast, chest and back areas can also develop lymphoedema

Lower limb lymphoedema cancers in the pelvic region Incidence in Ireland 2008 – 2010 Cervix : 308 incidence of lymphoedema 18% Uterus : 389 incidence of lymphoedema 17% Ovary : 345 incidence of lymphoedema 7% Other gynaecological cancers : 99 (incidence of lymphoedema 47%) Prostate : 3,014 incidence of lymphoedema 4% Testes : 175 incidence of lymphoedema ?10% Penile : 2% of all male tumors incidence of lymphoedema 21% Bladder : female – 124, male – 310 incidence of lymphoedema 16%

Gynecological Cancer Secondary Lymphedema

Upper limb or lower limb Melanoma Incidence of Melanoma in Ireland 2008 – 2010 Females : 463 Males : 349 Sentinal node clearance : 1.7% Axillary node clearance : 1 – 12%

melanoma

Head and Neck Incidence of mouth and pharynx cancer in Ireland Females 119, Males 227

Treating Lymphoedema CDT: Complete Decongestive Therapy

Treatment of lymphoedema 4 cornerstones of care: 1. Skin care 2. MLD/SLD 3. Compression via multilayer bandage or garments 4. Exercise

CDT

Benefits of CDT Reduction of pain/discomfort Reduced risk of infection/cellulitis Maintain/improved skin texture Improve motion and ability to perform daily activities Decrease fear and increase control over the condition of lymphoedema – empower Improve quality of life

Skin and nail care Decrease risk of infection Keep skin supple and clean Avoid injury (nicks, bites, burns etc) Clean all injuries immediately Lotions – non perfumed

Skin care : infection Signs/symptoms Red, warm/hot, pain, not feeling well, temperature, increased swelling Go to GP or emergency department

MLD aims to redirect fluid from swollen areas to healthy lymphatic vessels, transporting it back to the normal circulatory system. With gentle, light but precise hand movements applied to the skin. This encourages the fluid away from congested areas by bypassing ineffective or injured lymph vessels. The treatment is very gentle and a typical session will involve drainage of the neck, trunk, and the affected extremity (in that order), lasting approximately 40 to 60 minutes. The technique was pioneered by Doctor Emil Vodder in the 1930s for the treatment of chronic sinusitis and other immune disorders

Manual Lymphatic Drainage

Simple/self lymphatic drainage

Self Lymphatic drainage: Deep breathing plus SLD

Multi layer compression bandage Reduce swelling and prevent re-accumulation of fluid Provides a firm support for muscles, whose contractions against the lymph vessels enhance lymph flow

Compression garments

Exercise

Pumping action moves lymph through the lymphatic system Deep breathing stimulates lymph flow Maintains strong muscles which give protection Wear well fitting garments Improve sense of health and well-being Walk, bicycle, swim, yoga, dance, housework ! OVERALL IMPROVE YOUR QUALITY OF LIFE

CDT CDT should be carried out by a certified lymphoedema therapist Number and frequency of treatment depends on severity of lymphoedema Access to service will influence management Compression garments as appropriate are fitted On discharge self – management is key!

Self management At discharge from treatment you should know Day time compression products Night time compression Skin care Exercise programme Self manual lymphatic drainage

Self management Compression garments daytime : Freedom of movement Provide pressure to control lymphoedema Strong but not too strong that it is difficult to get on or off Well fitted No constrictions

Compression garments

Compression at night Depends on stage of management of condition In discussion with your therapist Made to measure garments available

Improved range of garments

Exercise (NLN) Start gradually/conservatively Add exertion slowly and in small increments only if there has been no increase in lymphoedema after exercise to date Stay well hydrated Take periodic deep abdominal breaths – facilitate lymph drainage Avoid temperature extremes Modify moves to accommodate your own needs Warm up, cool down, stretch

Self management Lymphoedema cannot be cured but it can be managed Self management is critical to reduce exacerbations of lymphoedema, infections and other symptoms associated with lymphoedema.

Self management

Can you prevent lymphoedema ? No-one can prevent lymphoedema once lymph nodes have been removed or if radiation over lymph nodes It can occur at any stage after surgery /irradiation The goal is to Reduce your risk

Risk reduction (National Lymphoedema Network NLN ) Protect skin – insect repellent, sunscreen, nail care Avoid injections - in at risk limb Exercise – gradually build up duration and intensity; monitor reaction of limb Avoid prolonged extreme heat or cold – (>15 mins) eg hot tub/sauna Weight control – manage your weight and well being Know your body – pay attention to areas at risk If you notice early symptoms seek medical attention

Early symptoms Swelling – you may notice clothes feeling tighter on affected side A feeling of heaviness in the limb Pain

Be informed/education The Irish Cancer Society – Irish Health – Lymphoedema Ireland – Manual Lymphatic Drainage Ireland – Gary Kelly Cancer Support centre – LARCC(Lakelands area Retreat & Cancer Centre – Arc Cancer Support –

Information National Lymphoedema Network ( Lymphatic Research foundation (

Current Services DCU/ICS research 2010, Living with Lymphoedema in Ireland :Patient and Service Provider Perspectives Key Findings

Service settings Public Private Cancer Support centre Hospice Community

Lymphoedema Practitioners Most work in large public hospitals 62.8% Profile of practitioners : physiotherapists 48.6%, breast care nurse 13.1%, PT manager 10.3%, MLD therapist 10.3%, OT 6.5%, Lymph nurse specialist 1.9%, other 15% 28 practitioners in a dedicated service No report of Social worker, Psychologist or Psychiatrist in any service

Referral Systems Hospital oncology clinic Hospital surgical clinics Hospital Physiotherapy clinics Hospital dermatology clinics Community Physiotherapy clinics General Practitioners Patients self referring Family/Friends of patients Other (eg palliative care teams, Cancer Care Centres etc

Areas providing lymphoedema services Area% general service N= 108 % dedicated service N = 18 Dublin Cork Donegal9.3 Galway6.5 Laois Cavan3.7 Tipperary3.7 Wexford Westmeath2.8 Meath2.8 Louth2.8

Lymphoedema Services cont Area% general service n= 108 % dedicated service N= 18 Limerick Mayo1.9 Monaghan1.9 Wicklow1.9 Waterford Sligo0.9 Clare0.9 Kerry0.9 Kildare0.9

Current Services DCU/ICS research 2010 Some Key Findings Lymphoedema services are insufficient and patchy Key challenges exist with regard to sustainability of services Delays with garments may compromise service provision Patients identified eg barriers to treatment, impact of lymphoedema on daily life, fear of uninformed health professional inadvertently worsening their condition

Future Services – Good news ! More information/education to public about lymphoedema Physiotherapy training : Education about and management of lymphoedema is included at undergraduate level HSE National Director of Quality and Patient Safety Philip Crowley – supported carrying out a survey of current lymphoedema Services, awaiting feedback. NCCP are establishing a group to look at lymphoedema prevention – Physiotherapist sitting on this group

Thank you for your attention Any Questions ?