Follow up and survivorship issues after treatment for breast cancer Michael Jefford MBBS, MPH, MHlthServMt, PhD, MRACMA, FRACP Clinical Consultant, Cancer Council Victoria Consultant Medical Oncologist, Peter MacCallum Cancer Centre Associate Professor of Medicine, University of Melbourne

Key points  There are a large number of breast cancer survivors – high incidence x high survival rates  Current focus of follow up / surveillance is (largely) on detection of cancer recurrence  Women with a prior experience of breast cancer have much broader survivorship issues

Key points  Women should be informed of ways to maintain their health and wellness –Survivorship care plan –Advice and coaching regarding healthy lifestyle  Alternative models of care (rather than led by medical specialists) should be explored

Useful resources

Cancer Council resources  Cancer Council Helpline , and database  DVD and booklet  Regional seminars  Survivors Cancer Connect  Support groups – face to face, telephone, internet

Breast cancer is the third most common cancer in Australia (excluding non melanoma skin cancers)

1, 5 and 10 year survival from breast cancer is high

5 year survival 87%

Survival rates are improving

Unfortunately, 3 rd highest cause of cancer death (after lung, prostate cancer)

Greatest number of cancer survivors are breast cancer survivors

Available as a PDF from the Cancer Council website –

Breast cancer – incidence and mortality trends (Victoria) Canstat: Cancer in Victoria The Cancer Council Victoria Epidemiology Centre 2009

Potential issues after completing treatments for (breast) cancer  Varied reactions to finishing treatment  Fear of recurrence  Ongoing treatment side effects  Relationship issues  Work / financial issues  Impact on family  Late and long-term effects of treatment –menopausal symptoms, loss of fertility, osteoporosis, cognitive disturbance, weight changes, altered body image, sexual problems, fatigue, heart problems, risk of second cancers  Distress, anxiety, depression

The US Institute of Medicine (IOM) report  From Cancer Patient to Cancer Survivor: Lost in Transition  Landmark report  Argued that the post treatment phase is a distinct phase that requires increased attention by clinicians  17 minute video on YouTube at 7y0msS6KNAA

The US Institute of Medicine report  Recommends four components of quality survivorship care 1.prevention of recurrent and new cancers 2.surveillance for cancer recurrence as well as for medical and psychosocial late effects 3.strategies to deal with the broad consequences of cancer and its treatment 4.coordination between specialists and primary care providers

Strategies to improve outcomes for cancer survivors  Information –Survivorship care plans  Strategies to remain well  Regular surveillance –Hospital, GP, nurses?  Supports

Survivorship care plans  A key component of optimal survivorship care is the use of a survivorship care plan (SCP)  The SCP is a summary of: –Cancer diagnosis and treatments –Plans for follow up –Current medical, psychosocial, practical issues, and a plan for management –Potential future issues and a plan for management  Ideally discussed with someone toward the end of potentially-curative treatment(s)

Why do we need them?  Because patients are ‘lost in transition’ (from cancer patient to cancer survivor)  Fragmented, poorly coordinated healthcare system  Patients need a coordinated plan for follow up and a plan to protect their health  Patients (and GPs) want to be informed and help ensure good survivorship outcomes

The SCP in more detail  Essential elements include details about: (i) the cancer (diagnosis and stage), all treatments (with dates, doses, complications), and potential short and long-term consequences (ii) the content and timing of recommended follow up (monitoring for treatment toxicity, cancer recurrence, and psychosocial / supportive care issues)

The SCP in more detail  Essential elements include details about: (iii) who will take responsibility for survivorship care (oncologist, primary care doctor (GP), survivor, carers) (iv) health promotional strategies (e.g. weight, exercise, diet, smoking cessation) (v) practical information and advice (e.g. regarding employment, insurance), and (vi) the availability of psychosocial/supportive care services

There are a range of resources available from the websitewww.asco.org

Patient guides available at the ASCO website and at

The SCP  For whom? –Person affected by cancer, GP, other treating doctors  In what format? –Paper and electronic –Tailored to the person’s (a) diagnosis, treatment, (b) own identified needs, and (c) to their preference for information (brief  detailed)

The SCP  Completing the SCP –? Nurse or oncologist –Many components are ‘generic’ –Resources available: (a) ‘implementing SCP’ workshop reports are available free (next slide); (b) ASCO guidelines for follow up; (c) community-based supports  Limited implementation to date

Useful (free) resources

Health behaviours of cancer survivors  An Australian study (2007) compared health behaviours of cancer survivors to a cohort of people without cancer  968 survivors, 5808 controls  Asked about smoking, physical activity, servings of fruit and vegetables, alcohol use, skin checks Eakin EG et al. Cancer Causes Control 2007; 18(8):

Health behaviours of cancer survivors  More likely to have comorbidities (and more of them)  More likely to be current smokers  More likely to have regular skin checks  (not stat sig) More likely to be overweight / obese  (not stat sig) Had higher alcohol consumption  No differences regarding physical activity, fruit and vegetable consumption Eakin EG et al. Cancer Causes Control 2007; 18(8):

Information about staying well  Maintain a healthy weight  More fruit and vegetables  Less fat  Exercise  Limit or avoid alcohol  Stop smoking

Weight  In women who had never smoked, those who gained between kg/m 2 had a relative risk of 1.35 of death from breast cancer, compared to those who maintained their weight  In women who had never smoked, those who gained > 2.0 kg/m 2 had a relative risk of 1.64 Kroenke CH et al. J Clin Oncol 2005; 23(7): Epub Jan 31

Dietary change  WHEL study –Women’s Healthy Eating and Living randomised controlled trial –Diet very high in vegetables, fruit, fibre and low in fat –People were able to adopt / maintain the diet –Did not reduce breast cancer recurrence / deaths Pierce JP et al. JAMA 2007; 298(3):

Dietary change  WINS study –Women’s Intervention Nutrition Study randomised controlled trial –% of calories from fat to 15% (realistic aim of 20% of calories from fat) –2437 women enrolled, median follow up 60 months –Significant reduction in cancer recurrence – 9.8% vs 12.4% (HR 0.76, 24% reduction in risk of cancer recurrence) Chlebowski RT et al. J Natl Cancer Inst 2006; 98:

Information about staying well  Stop smoking  Maintain a healthy weight  More fruit and vegetables  Less fat  Exercise  Limit or avoid alcohol

Views of survivors and health professionals regarding follow up and the SCP (Peter Mac)  General support for the notion of a SCP  Support for core content areas  Support for information for, and involvement of GPs  Uncertainties regarding: (a) who coordinates follow up; (b) who might complete / discuss the SCP; (c) content of the SCP

Survivorship care  The SCP needs to be integrated into a more complete approach / strategy  Alternate models of follow up may include nurse-led follow up (face to face, telephone), GP follow up, survivorship clinics

Beaver K et al. BMJ 2009; Jan 14;338:a3147

GP follow up of women with early stage breast cancer  Work of Dr Eva Grunfeld (series of RCTs of GP vs specialist follow up) shows that GP follow up is associated with –Similar disease outcomes (recurrence) –Similar quality of life –Greater satisfaction –Lower costs (patient, health service)

An example from our current work  We are developing a ‘comprehensive survivorship package’ including –DVD, booklet and a question prompt list –SCP – for patient and for GP –Nurse-led ‘end of treatment’ session –Telephone-based follow up Treatments Given DVD, booklet, QPLEnd of treatment session Review needs Discuss QPL Discuss SCP Telephone-based follow up

GP involvement

Conclusions  There are a large number of breast cancer survivors  The current focus of follow up is (likely) inadequate and probably inefficient  There are different models of providing survivorship care – these need to be piloted and evaluated  The most appropriate model will depend on local factors

Conclusions  Tailored, survivorship care plans are part of good survivorship care  We need to determine the ideal way to develop and discuss the SCP and how this is best integrated into survivorship care (models of care)  Ideally ongoing survivorship care should screen for, and respond to unmet needs