1. Supporting the oral cancer patient – what is the role of the dental team? Karen Matley Catherine Waldon Patient Involvement in Service improvement groups, ‘buddying’ and research projects. Our own experiences and that of other patients too Catherine – Volunteer helper in Maxillofacial clinics in Bradford

2. Outline: Our own cancer experiences Our treatments NHS and multi- disciplinary team Our fears and anxieties Short term effects Long term effects/ living with Cancer Our main messages: Early diagnosis key to patients’ future Quality Of Life Multiple and life-long side effects and impacts of surviving oral cancer, even when these are hidden from view

3. Tonsils removed when young History of sore throats Branchial cyst 1984 No history of heavy drinking or smoking GP consultation re “something at the back of my throat” GP referral to ENT Biopsy and bad news Scans, x-rays, blood tests Squamous cell carcinoma T2 in tonsil tissue/back of tongue Metatasized to neck lymph glands Catherine’s Cancer “Journey”

4. Treatment options 1 Radical surgery to remove primary tumour, and neck glands with reconstruction with a skin flap Chemo-radiotherapy for 4 or 7 weeks Opted for this approach. Treatment options 2 More minor surgery to remove neck glands Chemotherapy to shrink/eliminate tumour and course of radiotherapy

5. Major treatment fears: Loss of front tooth/teeth Damage to lip nerves Pain after surgery Facial disfigurement Talking/communication problems Eating problems/swallowing Damage to hearing, kidneys, and hair loss etc.

6. The NHS roller coaster: Dentist Dental hygienist Speech therapist Dietician Radiologically Inserted Gastrostomy (RIG) also (PEG) Macmillan Specialist Nurse Surgeons Anaesthetist Oncologist and Radiography team GP Restorative Dentists

7. Lump in the back of my mouth Aching jaw Non smoker Not a heavy drinker Face began to swell Blocked saliva glands referral to St. Lukes’ ‘Slow tracked’ Routine operation to remove lump Routine biopsy Early recall BAD NEWS! Karen’s Cancer “Journey”

8. Karen’s Treatment: Further surgery to area where lump was Full neck dissection All lymph nodes removed from neck Facial split surgery Skin graft from arm to mouth Temporary tracheotomy 6 and a half weeks of radiotherapy with chemotherapy

9. Immediate Effects of Treatment: Loss of mobility Learning to eat again

10. Long Term Effects Xerostomia Worse at night time – disturbed sleep Always having to check out where the toilets are! Saliva problems

11. Long Term Effects FOOD! EATING! Anxiety about eating out with friends Having to check out menus before-hand Choking and swallowing problems

12. Long Term Effects Continuing fear of losing teeth Constant care of mouth and teeth

13. Long Term Effects Trismus Jaw exercises every week – with a hi-tec device of mouth spatulas Speech Re-training the tongue to speak clearly

14. Other Long Lasting Effects of Treatment: Numbness in lips or hypersensitivity Ringing in ears Susceptibility to infection

15. To summarise: 1.Importance of regular and careful screening and health promotion to help minimise life long side effects and prevent re-occurrence of cancer. 2.Description of our treatment options.

16. Still grateful! Thank you for listening! Any questions? And now for something completely different!!............... Finally