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Summary of Recommendations

The clear message from the women at the 2004 Conference was that to make a difference, it is necessary to: standardise the delivery of breast cancer services across Australia implement nationally the National Breast Cancer Centre (NBCC) clinical practice guidelines and evaluate the extent of implementation require consumer input into all aspects of research and establish a clinical trials register eliminate discrimination on the basis of a history of breast cancer or genetic information. Currently there are inequalities in breast cancer services between states, in rural versus metropolitan areas, and in the public versus the private system. Standardisation of services and guideline implementation will enhance equitable access for women to a range of services, in particular, early detection, radiotherapy, and supportive and palliative care. In addition, it should provide the information women seek about issues such as the quality of care being provided and available services. System support for health professionals to deliver best practice—such as Medicare rebates for participants at multidisciplinary case conferences—and improved data collection systems—such as national collection of data on the incidence of metastatic breast cancer—were identified as vital to achieve this difference. The 61 recommendations from the Conference follow: recommendations 1–48 are from the conference workshops and recommendations 49–61 are derived from the plenary sessions. Key messages and recommendations from women Eliminate discrimination on the basis of breast cancer or genetic information   Standardise the delivery of breast cancer services across Australia   Implement the clinical practice guidelines nationally Evaluate implementation   Require consumer input into research               Ensure equitable access to best practice breast cancer care   Improve data collection and reporting   Inform consumers about services and quality of care by centre/clinician   Provide system support  for health professionals to deliver best practice care Multidisciplinary care ‘Coaches surround me: doctors, surgeons, breast care nurses, oncologists, and radiologists. Ready to help me cross the line. Encouraging me all the time. My sport is my life. My challenge is cancer.’ Lil McKean, Strathmerton, Vic; diagnosed in 2002 at age 41; recurrence in 2003 1. All women should be provided with written information about the members of their multidisciplinary team, what and how information is shared between team members and the treatment plan. 2. Multidisciplinary care should be included in the criteria for accreditation of cancer clinicians and services, both public and private. 3. Financial and structural support is required to encourage the provision of care in a multidisciplinary model. This may include Medicare rebates for all participating clinicians and the introduction of simplified systems for claiming these rebates. Improving early detection ‘Mary had actually had the lump for a couple of years … and they kept reassuring us. I specifically remember asking … the question. I said “It’s a lump. Isn’t it better to remove a lump rather than keep a lump?” and they said “Look mate, nine times out of 10 lumps aren’t anything. She’s young ...” ’ Spiro Neofitou, Diamond Creek, Vic; husband of Mary, diagnosed in 2002 at age 32 4. The BreastScreen program should be implemented consistently on a national basis. While it is acknowledged that BreastScreen’s target age group is 50–69 years, free mammography should be available for all women over 40. 5. Clear and meaningful information should be made available to women and GPs about early detection methods for women of all ages and levels of risk and the importance of the triple test for women of all ages with a breast change. 6. Research into methods of early detection for young women, women with dense breasts and women at high risk of developing breast cancer should be promoted and funded. Improving supportive care ‘In those first dreadful months after my diagnosis with metastatic breast cancer I realised in my rare lucid moments that I craved contact with women who were also dying from the same bitch that had somehow snuck up on me.’ Lynda Clarke, Mackay, Qld; diagnosed with metastatic breast cancer in 2002 at age 45 7. Best practice care, as identified in the National Breast Cancer Centre’s Psychosocial Clinical Practice Guidelines: Information, Support and Counselling for Women with Breast Cancer, should be consistently implemented nationally in both private and public hospitals and community-based services. 8. Where women are identified as being at risk of anxiety and depression, adequate referral mechanisms and access to psychosocial practitioners are required to ensure they receive appropriate psychosocial interventions. 9. A wide range of consumer-focused information and support services should be made available to women throughout their treatment and beyond. Metastatic breast cancer: Treating the body ‘I’m just so bloody tired. I’m sick of them cutting off parts of me, poisoning me, radiating me and then telling me there’s still a strong chance that the cancer will come back.’ Tanya Wilson, Sunbury, Vic; diagnosed in 1997 at age 35; recurrence in 2003 10. Collection on a national basis of data about the incidence of metastatic breast cancer is required so that resources can be properly allocated and managed. 11. A nationally consistent approach to palliative care services for women with metastatic breast cancer should be implemented. Palliative care should be accessible and available to all women on an ‘as needs’ basis. 12. Improved, affordable access to pharmaceuticals which can significantly improve quality or length of life is required. Metastatic breast cancer: Practical, emotional and spiritual support ‘Yet, even with good family support and love, there are times when I need specialised psychosocial support: like the first six to 12 months after diagnosis, or when scan results are not so good, or at times of disease progression, or when the everyday problems of life get me down; or when friends and colleagues with breast cancer die.’ Veronica Macaulay-Cross, Deagon, Qld; diagnosed 1996 at age 40; recurrence in 1999 13. The National Breast Cancer Centre’s Clinical Practice Guidelines for the Management of Advanced Breast Cancer should be implemented nationally. 14. All women with metastatic breast cancer should be assessed on an ongoing basis to determine their individual needs for practical, emotional and spiritual support. 15. The shortage of psychosocial practitioners and appropriate support services should be addressed so that all women with metastatic breast cancer can have access to supportive care, regardless of their location or circumstances. Influencing breast cancer research ‘I am often asked, “Did I feel like a lab rat whilst on clinical trial?” and my answer is simply “No”. In fact, I describe it as VIP treatment.’ Maria Waters, Balcatta, WA; diagnosed in 1989; recurrences in 1992, 1998, 2004 16. An easily accessible, up-to-date, consumer-focused database/register of clinical trials, research projects and research outcomes should be established. 17. A protocol for consumer participation in research should be developed and adopted on a national basis. 18. BCNA to develop mechanisms, such as a member survey, to ascertain breast cancer consumer research priorities. Breast reconstruction ‘ “What about breast reconstruction?” I asked. “Oh”, he said dismissively, “You don’t think about that until way down the track” ’. Angela Verde, Wangaratta, Vic; diagnosed in 2002 at age 42 19. Recognition that reconstruction is a core component of care, not elective surgery, should be promoted. 20. Information on the range of reconstruction options, including the benefits of a plastic surgeon performing the reconstruction, should be given to all women having a mastectomy prior to surgery. 21. Improved access to training of breast surgeons in breast reconstruction should occur and, where possible, plastic surgeons should be members of multidisciplinary teams for women undergoing mastectomy. Young women ‘Some people in the community still mistakenly think that breast cancer is a disease of the elderly. Young women get breast cancer too, and on top of all the other challenges faced by women with this disease, we have other major issues which include body image, sexuality, worrying about our fertility and coping when you have small children.’ Molly Stacey, Rushcutters Bay, NSW; diagnosed 2002 at age 35 22. The National Breast Cancer Centre’s Clinical Practice Guidelines for the Management and Support of Younger Women with Breast Cancer should be implemented nationally. 23. Further research into fertility issues for young women following breast cancer diagnosis should be undertaken. 24. A readily accessible consumer focused database of community services available for women with young children should be developed. Rural and regional women ‘We are in my room on the second floor of the radiation clinic accommodation block. We unpack our things for a six-week-long stay. Clothes in the cupboard; toiletries in the bathroom; cereal, coffee and teabags on the shelf and food in the first-floor fridge.’ Christine Dahlenburg, Port Fairy, Vic; diagnosed in 2002 at age 35 25. Following a review of the current administration system, a best practice (standardised nationally) Patient Assistance Transport Scheme (PATS) should be implemented. 26. Accessible and reasonable cost accommodation for patient and spouse/carer close to treatment centres should be provided. 27. Appropriate follow-up care and support in local communities should be provided after initial treatment at specialist centres. Breast care nurses ‘This particular nurse is so attuned to me that I have only to say the word and the right professional is there to give advice.’ Lesley Wilder, Mansfield, Qld; diagnosed 1992 at age 37; recurrence in 2000 28. Every woman, in the public or private sector, diagnosed with breast cancer should have access to a breast care nurse either face-to-face, or by telephone if they live in remote locations. 29. Every multidisciplinary team should include a breast care nurse. 30. All breast care nurses (existing and future) should be trained to competently conduct psychosocial assessment in order to identify women at risk of anxiety and depression. Long-term effects of treatment ‘If, like Jill, your daughter has been diagnosed before she’s had children, you face the added worry about her fertility … Also, Jill now has to deal with explaining various scars to any new man in her life, and a range of other things that the diagnosis and treatment entails for future relationships. Another unexpected—cancer affects your daughter’s WHOLE life, even after the end of treatment.’ Ronda Fienberg, North Ringwood, Vic; mother of Jill, diagnosed in 1998 at age 28 31. A written long-term follow-up plan should be provided to every woman at the end of her active treatment and clinicians should actively raise issues regarding the long-term effects of breast cancer with their patients. 32. Research into the long-term effects of adjuvant therapies and strategies to address these effects should be conducted. Clinical trials of adjuvant therapies should include quality of life measures. 33. Baseline bone density scans, covered by Medicare rebates, should be available to women following adjuvant therapy. Doctor/patient relationship—improving communication ‘My breast surgeon and medical oncologist will not be so thrilled ‘though as I've come away with a couple of pages of new questions!!!’ Feedback from a conference participant 34. Early and ongoing communication skills training and education should be provided to all health professionals. 35. Accreditation and credentialling criteria should include levels of communication skills. 36. Women should be given practical resources, such as the My Journey Kit, about how to improve their communication with health professionals. Lymphoedema ‘He said that I was having axillary clearance (but) he didn’t mention lymphoedema, so I … mentioned reconstruction and I brought up lymphoedema. However, I didn’t get much of a positive response about either.’ Ann Hollingworth, Malvern, Vic; diagnosed in 2003 at age 67 37. Good state-based models for the provision of financial assistance for purchasing compression garments in all states, based on the Victorian and Tasmanian models for providing government support, should be implemented. 38. A consistent source of information about state-based lymphoedema services with emphasis on rural and remote services should be made available. 39. Through their multidisciplinary teams, women should have access to lymphoedema practitioners and services. Prostheses ‘A breast prosthesis is the difference between a woman returning to her normal life activities or hiding away at home not wanting to face people—living a half life. And then came the bra issue—I was stunned to find I could buy a mastectomy bra in very basic colours only—gone are the days of glorious colour and matching knickers.’ Jenny Richardson, Boat Harbour, Tas; diagnosed 2002 at age 55 40. All states and territories, after review and inquiry, should implement a government-supported, best practice scheme for the provision of breast prostheses, taking into consideration the Victorian model. 41. Work with the private health insurance industry should be undertaken to ensure that all women with private health cover, who have a mastectomy in the private system, can claim the real cost of breast prostheses after a mastectomy as well as on an ongoing basis. 42. The methods of serving the needs of women in rural and remote areas who require breast prostheses should be improved. Insurance ‘I was angry because the travel insurance company made the decision without even obtaining my current medical status … They saw my disease and wrote me off.’ Denice Bassanelli, Newton, SA; diagnosed in 1997 at age 35; recurrence in 2000 43. The Disability Discrimination Act should be amended to limit the exemption for insurers and to make it more consumer-orientated. 44. BCNA to prepare an information sheet on practical issues in obtaining travel insurance. 45. BCNA and other consumer groups to work with the insurers and/or Insurance Council of Australia in relation to the Disability Discrimination Act, for example, to develop an insurers’ guide to the Disability Discrimination Act. Complementary therapies ‘Why would I tell my doctor? They don’t believe in non-hospital treatments. I don’t know if it’s working but I know it makes me feel better.’ Sylvia Woods, Esperance, WA; diagnosed 1998 at age 63 46. The key recommendations in the Complementary Medicines in the Australian Health System report should be implemented, for example, governments should move more quickly to nationally consistent, statutory regulation (where appropriate) of complementary health care professions. 47. Quality information about complementary medicines should be available to all women with breast cancer. 48. High quality research into complementary therapies, taking account of quality of life and symptom control, should be a funding priority. Reporting of breast cancer statistics 49. Reporting of breast cancer statistics, for example, incidence and trends, should be more responsive to consumer needs, that is, available in a more timely manner. Ductal carcinoma in situ (DCIS) 50. The National Breast Cancer Centre’s Clinical Management of Ductal Carcinoma in Situ, Lobular Carcinoma in Situ and Atypical Hyperplasia of the Breast guidelines should be implemented nationally. 51. Women diagnosed with DCIS should be included in the statistics used to determine services for breast cancer. Consumer input 52. Consumer input should be maintained into the process of implementing the National Breast Cancer Centre’s clinical practice guidelines nationally. 53. Consumer input should continue into research funding committees and selection of research projects. Implementation of clinical practice guidelines 54. The National Breast Cancer Centre’s clinical practice guidelines should be implemented nationally in all centres delivering breast cancer treatment. National Breast Cancer Audit 55. The National Breast Cancer Audit conducted by the Breast Section of the Royal Australasian College of Surgeons should be further developed and supported. Menopause 56. Quality information should be provided to women who have had breast cancer to enable them to make informed decisions about the way they manage menopause. 57. All women should have access to quality information about the role, limitations and risks of hormone replacement therapy (HRT). Genetic testing 58. People should be protected from discrimination on the basis of their genetic information, in particular in the workplace or when applying for insurance. 59. Quality genetic counselling services should be an integral component of genetic testing services for women with breast cancer and their families. 60. Results of genetic testing should be available to women within a reasonable timeframe. 61. Women in high risk groups should have access to quality surveillance methods, affordable genetic counselling and timely testing services.   16. An easily accessible, up-to-date, consumer-focused database/register of clinical trials, research projects and research outcomes should be established. 17. A protocol for consumer participation in research should be developed and adopted on a national basis. 18. BCNA to develop mechanisms, such as a member survey, to ascertain breast cancer consumer research priorities. Breast reconstruction ‘ “What about breast reconstruction?” I asked. “Oh”, he said dismissively, “You don’t think about that until way down the track” ’. Angela Verde, Wangaratta, Vic; diagnosed in 2002 at age 42 19. Recognition that reconstruction is a core component of care, not elective surgery, should be promoted. 20. Information on the range of reconstruction options, including the benefits of a plastic surgeon performing the reconstruction, should be given to all women having a mastectomy prior to surgery. 21. Improved access to training of breast surgeons in breast reconstruction should occur and, where possible, plastic surgeons should be members of multidisciplinary teams for women undergoing mastectomy. Young women ‘Some people in the community still mistakenly think that breast cancer is a disease of the elderly. Young women get breast cancer too, and on top of all the other challenges faced by women with this disease, we have other major issues which include body image, sexuality, worrying about our fertility and coping when you have small children.’ Molly Stacey, Rushcutters Bay, NSW; diagnosed 2002 at age 35 22. The National Breast Cancer Centre’s Clinical Practice Guidelines for the Management and Support of Younger Women with Breast Cancer should be implemented nationally. 23. Further research into fertility issues for young women following breast cancer diagnosis should be undertaken. 24. A readily accessible consumer focused database of community services available for women with young children should be developed. Rural and regional women ‘We are in my room on the second floor of the radiation clinic accommodation block. We unpack our things for a six-week-long stay. Clothes in the cupboard; toiletries in the bathroom; cereal, coffee and teabags on the shelf and food in the first-floor fridge.’ Christine Dahlenburg, Port Fairy, Vic; diagnosed in 2002 at age 35 25. Following a review of the current administration system, a best practice (standardised nationally) Patient Assistance Transport Scheme (PATS) should be implemented. 26. Accessible and reasonable cost accommodation for patient and spouse/carer close to treatment centres should be provided. 27. Appropriate follow-up care and support in local communities should be provided after initial treatment at specialist centres. Breast care nurses ‘This particular nurse is so attuned to me that I have only to say the word and the right professional is there to give advice.’ Lesley Wilder, Mansfield, Qld; diagnosed 1992 at age 37; recurrence in 2000 28. Every woman, in the public or private sector, diagnosed with breast cancer should have access to a breast care nurse either face-to-face, or by telephone if they live in remote locations. 29. Every multidisciplinary team should include a breast care nurse. 30. All breast care nurses (existing and future) should be trained to competently conduct psychosocial assessment in order to identify women at risk of anxiety and depression. Long-term effects of treatment ‘If, like Jill, your daughter has been diagnosed before she’s had children, you face the added worry about her fertility … Also, Jill now has to deal with explaining various scars to any new man in her life, and a range of other things that the diagnosis and treatment entails for future relationships. Another unexpected—cancer affects your daughter’s WHOLE life, even after the end of treatment.’ Ronda Fienberg, North Ringwood, Vic; mother of Jill, diagnosed in 1998 at age 28 31. A written long-term follow-up plan should be provided to every woman at the end of her active treatment and clinicians should actively raise issues regarding the long-term effects of breast cancer with their patients. 32. Research into the long-term effects of adjuvant therapies and strategies to address these effects should be conducted. Clinical trials of adjuvant therapies should include quality of life measures. 33. Baseline bone density scans, covered by Medicare rebates, should be available to women following adjuvant therapy. Doctor/patient relationship—improving communication ‘My breast surgeon and medical oncologist will not be so thrilled ‘though as I've come away with a couple of pages of new questions!!!’ Feedback from a conference participant 34. Early and ongoing communication skills training and education should be provided to all health professionals. 35. Accreditation and credentialling criteria should include levels of communication skills. 36. Women should be given practical resources, such as the My Journey Kit, about how to improve their communication with health professionals. Lymphoedema ‘He said that I was having axillary clearance (but) he didn’t mention lymphoedema, so I … mentioned reconstruction and I brought up lymphoedema. However, I didn’t get much of a positive response about either.’ Ann Hollingworth, Malvern, Vic; diagnosed in 2003 at age 67 37. Good state-based models for the provision of financial assistance for purchasing compression garments in all states, based on the Victorian and Tasmanian models for providing government support, should be implemented. 38. A consistent source of information about state-based lymphoedema services with emphasis on rural and remote services should be made available. 39. Through their multidisciplinary teams, women should have access to lymphoedema practitioners and services. Prostheses ‘A breast prosthesis is the difference between a woman returning to her normal life activities or hiding away at home not wanting to face people—living a half life. And then came the bra issue—I was stunned to find I could buy a mastectomy bra in very basic colours only—gone are the days of glorious colour and matching knickers.’ Jenny Richardson, Boat Harbour, Tas; diagnosed 2002 at age 55 40. All states and territories, after review and inquiry, should implement a government-supported, best practice scheme for the provision of breast prostheses, taking into consideration the Victorian model. 41. Work with the private health insurance industry should be undertaken to ensure that all women with private health cover, who have a mastectomy in the private system, can claim the real cost of breast prostheses after a mastectomy as well as on an ongoing basis. 42. The methods of serving the needs of women in rural and remote areas who require breast prostheses should be improved. Insurance ‘I was angry because the travel insurance company made the decision without even obtaining my current medical status … They saw my disease and wrote me off.’ Denice Bassanelli, Newton, SA; diagnosed in 1997 at age 35; recurrence in 2000 43. The Disability Discrimination Act should be amended to limit the exemption for insurers and to make it more consumer-orientated. 44. BCNA to prepare an information sheet on practical issues in obtaining travel insurance. 45. BCNA and other consumer groups to work with the insurers and/or Insurance Council of Australia in relation to the Disability Discrimination Act, for example, to develop an insurers’ guide to the Disability Discrimination Act. Complementary therapies ‘Why would I tell my doctor? They don’t believe in non-hospital treatments. I don’t know if it’s working but I know it makes me feel better.’ Sylvia Woods, Esperance, WA; diagnosed 1998 at age 63 46. The key recommendations in the Complementary Medicines in the Australian Health System report should be implemented, for example, governments should move more quickly to nationally consistent, statutory regulation (where appropriate) of complementary health care professions. 47. Quality information about complementary medicines should be available to all women with breast cancer. 48. High quality research into complementary therapies, taking account of quality of life and symptom control, should be a funding priority. Reporting of breast cancer statistics 49. Reporting of breast cancer statistics, for example, incidence and trends, should be more responsive to consumer needs, that is, available in a more timely manner. Ductal carcinoma in situ (DCIS) 50. The National Breast Cancer Centre’s Clinical Management of Ductal Carcinoma in Situ, Lobular Carcinoma in Situ and Atypical Hyperplasia of the Breast guidelines should be implemented nationally. 51. Women diagnosed with DCIS should be included in the statistics used to determine services for breast cancer. Consumer input 52. Consumer input should be maintained into the process of implementing the National Breast Cancer Centre’s clinical practice guidelines nationally. 53. Consumer input should continue into research funding committees and selection of research projects. Implementation of clinical practice guidelines 54. The National Breast Cancer Centre’s clinical practice guidelines should be implemented nationally in all centres delivering breast cancer treatment. National Breast Cancer Audit 55. The National Breast Cancer Audit conducted by the Breast Section of the Royal Australasian College of Surgeons should be further developed and supported. Menopause 56. Quality information should be provided to women who have had breast cancer to enable them to make informed decisions about the way they manage menopause. 57. All women should have access to quality information about the role, limitations and risks of hormone replacement therapy (HRT). Genetic testing 58. People should be protected from discrimination on the basis of their genetic information, in particular in the workplace or when applying for insurance. 59. Quality genetic counselling services should be an integral component of genetic testing services for women with breast cancer and their families. 60. Results of genetic testing should be available to women within a reasonable timeframe. 61. Women in high risk groups should have access to quality surveillance methods, affordable genetic counselling and timely testing services.   While some women are still misdiagnosed and poorly managed the number of women diagnosed with breast cancer still increases women still die from breast cancer … it is vital that breast cancer remain on the national agenda and the work of Breast Cancer Network Australia continues. There is still much work to be done.