Watching and waiting : what it means for patients Dr Christian Aldridge Consultant Dermatologist Cwm Taf NHS Trust
Watching and waiting or...watching and worrying Once you have a cancer diagnosis, you re always going to be in a watch-and-wait mode, whether you were diagnosed 10 months or 10 years ago when you ve been told you have cancer, there is no putting the genie back in the bottle
Proportion of Melanoma Diagnosed at Each Stage, All Ages, England 2013
Melanoma Established diagnosis Tumour is staged Treatment and investigations complete Now...
Follow -up The goal of any cancer follow-up regimen is to identify recurrence or metastasis early and initiate treatment NCCN Clinical Practice Guidelines in Oncology: Melanoma. 2013.
Follow -up Detect recurrence Detect further primary Provide support / info./education
Current NICE Recommendations Stage 0 (melanoma-in-situ ) : discharged after treatment. Stage IA 12 months follow-up then discharge. Stage Ib-IIB or Stage IIC with negative SLNB: 3/12 for 3 yrs then 6/12 for 2 yrs. Stage IIC but no SLNB or Stage III (involved lymph nodes) : 3/12 for 3 yrs then 6/12 for 2 yrs. Stage IV individualised follow-up
Follow-up With who : May be multidisciplinary Structure : Based on staging How does it begin: Consultation with clinician/cns
Follow-up The majority of Stage I and II melanoma recurrences are locoregional, the physical examination remains the cornerstone of follow-up care J Skin Cancer. 2014; 2014: 429149.
Physical Examination The site of melanoma The draining lymph nodes Abdomen : organ involvement Rest of the skin
Physical examination 528 patients with Stage I melanoma 115 recurrences 87% found on clinical exam Dermatology. 1995; 191(3):199-203 Physical exam detects metastasis 94 % of the time JAMA. 1995 Dec 6; 274(21):1703-5
Patient self-examination 62 % of melanoma recurrences were detected by patients themselves Lancet Oncol. 2005 Aug; 6(8):608-21 Australian and New Zealand Guidance Clinical practice guidelines for the management of melanoma in Australia and New Zealand 2013
Follow-up How often? No consensus exists regarding the optimal frequency and longitudinal duration of visits Intervals range from 3 to 12 months Most melanoma recurrences occur within the first 5 years of diagnosis. JAMA Surgery. 2013 Jan 16
However... Melanoma has profound effects on patients both psychologically and emotionally Cognitive-behavioral intervention for distress in patients with melanoma: comparison with standard medical care and impact on quality of life. Cancer. 2003 Aug 15;98(4):854-64
Cancer patients' information needs and information seeking behaviour: in depth interview study BMJ. 2000 Apr 1; 320(7239): 909 913 17 patients with cancer diagnosed in previous 6 months All patients wanted basic information : Faith in their doctor's medical expertise Hope essential for patients to carry on with life as normal Charity to fellow patients Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it
Psychosocial interventions to improve quality of life and emotional wellbeing for recently diagnosed cancer patients Cochrane Database Syst Rev. 2012 Nov 14 Significant psychological distress in 75% pts Lack of clarity over ways to address this Review of 30 trials Nurse-delivered interventions: impact on mood...
The Psychology of Follow-up Few studies available Melanoma diagnosis : despair / anxiety Patients consumed with fear of recurrence Request certain tests : earlier detection Against clinical judgement Eur J Cancer. 1995; 31A(2):157-62
The Psychology of Follow-up > 85% melanoma pts rated follow-up surveillance as worthwhile...little attention paid to their well-being Lancet Oncol. 2005 Aug; 6(8):608-21
Patients' perspectives of long-term follow-up for localised cutaneous melanoma Eur J Surg Oncol. 2013 Mar;39(3):297-303 29 stage I/II melanoma patients Patient-perceived benefits of follow-up : reassurance, early detection, selfexamination, ask questions, 'sunsafe' behaviours Downsides : anxiety leading up to and during follow-up visits; inconvenience of travel ; and lost work time Access to specialists for unscheduled visits Follow-up intervals of 12 months appear to be acceptable to patients.
Psychosocial aspects of post-treatment follow-up for stage I/II melanoma: a systematic review of the literature Psychooncology. 2013 Apr;22(4):721-36 15 studies Anxiety with melanoma follow-up was common More emotional support from their clinician than was provided. Clinicians sometimes ordered additional blood and imaging tests to reassure patients GPs were hesitant to conduct melanoma follow-up Patients and GPs wanted prompt access to melanoma specialists when suspicious lesions were found. Psychosocial aspects of follow-up impact on patient well-being and potential adherence to schedules
The Experience of Melanoma Follow-Up Care: An Online Survey of Patients in Australia J Skin Cancer. 2014; 2014: 429149. 150 Melanoma pts: 47% : No written information 40% : Used websites as main source of info. 64% : Wanted more info. form clinicians 70% : No info. On cancer services/patient support/sun-protection 45% : Inadequate psychological support
The Experience of Melanoma Follow-Up Care: An Online Survey of Patients in Australia J Skin Cancer. 2014; 2014: 429149. Patient satisfaction was low Lack of reassurance from health professionals Preference for more scans means of reassurance** Inadequate info. on skin self- examination Technical care V Interpersonal care
Imaging during Follow-up** Scanning in the absence of clinical symptoms, physical findings, or abnormal laboratory values has an extremely low yield for detecting metastasis Oncol Rep. 2003 Mar-Apr; 10(2):505-10 CT Chest/Abdo/Pelvis = 650 Chest X-rays Ultrasonography : accurate imaging modality for staging and surveillance in patients with Stage III and IV Melanomas J Natl Cancer Inst. 2011 Jan 19; 103(2):129-42 No Consensus
A qualitative assessment of psychosocial impact, coping and adjustment in high-risk melanoma patients and caregivers Melanoma Res. 2014 Jun;24(3):252-60 19 stage III melanoma patients and 14 of their caregivers Coping responses : Diagnosis - avoidance Treatment - confidence in team / taking action Survivorship - positive meaning / acceptance / moving on/ watchful waiting Global themes brave face / helpful thinking / religion *
A qualitative assessment of psychosocial impact, coping and adjustment in high-risk melanoma patients and caregivers Melanoma Res. 2014 Jun;24(3):252-60 Findings : screening for the presence of symptoms of psychological distress and appropriate referral when necessary communication skills training routine assessment of patient-reported outcomes to inform clinical practice
Team approach Standardise care Communication skills Ongoing discussions Peer reviewed Skin Cancer MDT NICE 2006
The Clinical Nurse Specialist Key worker Support Advice : e.g Financial Contactable Feedback
Other Coping Mechanisms
Internet use and anxiety in people with melanoma and nonmelanoma skin cancer Dermatol Surg. 2011 Sep;37(9):1252-9 People with cancer are increasingly turning to the Internet for health-related information Questionnaire survey of 415 Melanoma pts Internet search increased more than 50% in participants with melanoma from 2005. 1/3rd of participants with melanoma reported higher anxiety after Internet use. younger, female, more highly educated, were most likely to use the Internet to search for information about their diagnosis. Greater anxiety from searching the Internet is more common in individuals with melanoma than in those with NMSC.
Social media use among patients and caregivers: a scoping review 284 studies BMJ Open 2013;3:e002819 Discussion forums constitute : 66.6% Social networking sites : 14.8% Blogs/microblogs : 14.1% Purpose of tool : to facilitate self-care in 77.1%
Social Media Use Blogging activity among cancer patients and their companions J of Am Soc Info Sci Tech Vol 59 2008 Online survey of 113 respondents Cancer patients and companions both found blogging activity to be most helpful for emotion management and information-sharing.
So, where are we now...
What Follow-up should involve Follow-up should be MDT lead with CNS support. Patients should be taught to self-examine to detect loco-regional recurrence. Photos for those with many naevi. Whole skin/thorough exam by doctors Defined rapid access pathway for pts and Gps for suspected recurrence. In the event of suspected recurrence, even after discharge from follow up,pt should contact secondary care directly.
What Follow-up should involve The proportion of patients with melanoma who have impaired health-related quality of life is comparable with other cancers and their needs for psychological support may be similar Ann Oncol 2009 ; 20 (Suppl. 6) : 51-8. Provision of this is an important part of MDT management Psychother Psychosom Med Psychol 1998 ; 48 : 338-48
What Follow-up should involve Access to Clinical Psychologist Living with Uncertainty Macmillan Follow-up should not be a passive process Education can help people feel empowered
Thank you The role of the CNS/ keyworker is a must, when you are told in a clinic setting you have melanoma your world stops... she sat us both down talked to us, answered any questions... when times get bad you know she is at the end of the phone My diagnosis was a complete surprise. I was therefore shocked and anxious, but CNS was and continues to be extremely helpful, friendly and supportive. This has helped me greatly Just having extra support made the difference to me