April 2012
HER2 status in secondary breast cancer
Researchers from the MD Anderson Cancer Centre in Texas retrospectively investigated the records of women with HER2-positive early breast cancer tumours, to check whether their secondary (or metastatic) tumours were also HER2-positive or not. 24% of the 182 women included in the study had HER2-negative secondary tumours. These women had reduced overall survival compared with the women whose metastatic tumour was also HER2-positive.
The researchers emphasise the need to biopsy secondary tumours if safe and possible to do so, to determine their HER2 status before starting treatment.
To read the abstract of this research, visit the Journal of Clinical Oncology website.
Protein found to predict spread of breast cancer to lungs
Spanish researchers have found that breast cancer cells that have spread to the lung express a high level of the PRDX2 protein. In breast cancer, high levels of the PRDX2 protein promotes growth of cells in the lungs, which may result in the spread of breast cancer to the area.
The researchers of this study suggest that developing new treatments to control the levels of PRDX2 protein could be a new way to prevent breast cancer from spreading to the lungs. However, it is important to note that the development of any new treatments as a result of this research is likely to be a long way off.
To read more about this research, visit the Medical News Today website.
March 2012
Biopsies of liver metastases can change treatment options
Research conducted in Italy has recommended that a biopsy of liver metastases should be undertaken when safe and appropriate to do so, as the results may influence treatment related decisions. The researchers analysed a database of liver metastases and found that in 14% of patients, their oestrogen responsive breast cancer status was changed based on the results of the biopsy. Biopsies also resulted in changes to progesterone responsive breast cancer status in more than 48% of women, and human epidermal growth factor receptor (HER2) status in more than 13% of women.
Based on results of liver biopsies, changes in treatment plans occurred in 12% of women.
To read the abstract, visit the Annals of Oncology’s website.
June/July 2011
Altruism and involvement in Phase II clinical trails
Research presented at the American Society of Clinical Oncology Conference in Chicago, has examined the levels of altruism that patients with secondary cancer experience in being involved with Phase II clinical trials. (A phase II clinical trial involves a drug or treatment being given to a larger group of people to evaluate how effective and safe it is). The researchers interviewed 50 patients in the United States to determine their levels of hope and their altruistic motivation for being involved.
The results highlighted that the main motivation for being involved was the hope that the new treatment would help control their disease and this was expressed by all involved. Over a third of those interviewed, also stated that they felt that they were contributing to finding an effective treatment for those who were yet to be diagnosed. From this involvement, these patients developed a great commitment to helping others and felt that it helped them to cope better with their disease.
To read the abstract of this research, visit ASCO Annual 11 Meeting website.
May 2011
Physical activity, quality of life and interest in activity in patients undergoing palliative chemotherapy
Research published in Supportive Care in Cancer has examined physical activity levels in patients undergoing palliative chemotherapy and their thoughts about a physical activity training program. The results highlighted all the women who were undertaking physical activity had a better quality of life score then those who weren’t.
To read the abstract of this article, visit Supportive Care in Cancer’s website.
April 2011
Home Hospice 2011 Conference - conversations about where and how we die
Some of you may know about Home Hospice, a national organisation that works to empower people to participate in the care of those who are dying. Home Hospice does this by linking carers to a trained volunteer mentor with personal experience in caring for a dying loved one.
Home Hospice recently held their 2011 conference in Sydney. The aim of this conference was to discuss why Australian communities have lost their literacy around dying and death, and to explore ways of regaining it as communities, and in our own lives.
BCNA Senior Policy Officer Astrid Keir attended the conference along with BCNA Community Liaison Donna Vitagliano (who looked great in all her pink!).
An impressive line-up of speakers were involved, including:
- Helen Garner, author of many books including The Spare Room,
- Joel Nathan, founder of the national 24/7 telephone counselling service Life goes on,
- Professor Stephen Leeder, Director for the Menzies Centre for Health Policy, and
- Dr Simon Longstaff, Executive Director of St James Ethics Centre.
For more information download the Home Hospice 2011 Conference Summary written by Donna Vitagliano and Astrid Keir.
March 2011
The Inside Story
The Inside Story is BCNA’s free quarterly magazine for women with secondary breast cancer and is a supplement to The Beacon magazine. The Inside Story includes stories from women with secondary breast cancer as well as information and resources for women and their families.
If you don’t receive The Inside Story and would like too, please email policy@bcna.org.au.
The Autumn edition of The Inside Story provides a summary of research that BCNA undertook with the Peter MacCallum Cancer Centre to ask women with secondary breast cancer about their information and support needs. If you would like to read more about the results and any other information download My long and winding road - issue 20 of The Inside Story.
February 2011
The effect of changing the name of palliative care to supportive care
Researchers in the United States have found that changing the name from palliative care to supportive care increased the number of patient referrals from both inpatient (hospital) and outpatient settings. Due to the name change, a decrease was seen in the time between a diagnosis of secondary cancer and referral to palliative care, with the outpatient setting providing the best access and referral. The researchers highlighted that similar name changes should be seen across more centres.
More information can be found on The Oncologist website.
Experiences of secondary breast cancer
This newspaper article from the New York Time summarises the experiences that many women with secondary breast cancer feel from an American point of view, as well as covering the different medical treatments that can be encountered. The article provides an insight into the thoughts of a newly diagnosed woman attending a support group, only to find out that the other members were either survivors or had just been diagnosed with early breast cancer, the science of treating secondary breast cancer, the limited research into metastasis and the impact of the Federal Drug Administration removing the approval for Avastin a drug for women with secondary breast cancer in the United States.
The author highlights the impact of the death of Elizabeth Edwards (the former wife of previous Presidential nominee John Edwards) in December last year, for women diagnosed with secondary breast cancer in the United States, as she had put a face to the disease, which is often not discussed in the media.
The full article is available on The New York Times website.
December 2010
Trial of breast care nurse for women with secondary breast cancer a success
Health professionals in Sydney have trialled a new program that provided women with secondary breast cancer with access to a Breast Care Nurse (BCN). The results found that the program was a success for those women were connected with the BCN.
The trial found that the majority of women said that the supportive care they received from the BCN was important and that it assisted with their care and wellbeing. Those women involved in an evaluation of the program were likely to recommend a hospital with a BCN specialising in secondary breast cancer to a friend in a similar situation. Women also said that they valued the chance to be able to share their concerns with one health professional. Results from the health professionals found that the majority felt that, as a result of the program, the services for women with secondary breast cancer had improved.
As a result of the program, the role of a BCN for women with secondary breast cancer will be a full time position at the Sydney Hospital which trialled the program, a support group will be developed and the program will be promoted to a wider group of health professionals, so they can refer women with secondary breast cancer to the BCN.
November 2010
Benefits involved for women with secondary breast cancer receiving longer first line chemotherapy
A new meta-analysis (a review that combines the results of different studies on a set question) has suggested that there may be benefit in increasing the duration of some chemotherapy for women with secondary breast cancer. The analysis has suggested that women may get some advantage if chemotherapy was continued after disease stabilisation.
The researchers suggest that this could become routine practice for women with secondary breast cancer.
To find out more information about the research please visit Medical News Today website.
Finding the words: starting a conversation when your cancer has progressed
Cancer Australia has published a resource entitled Finding the words: starting a conversation when your cancer has progressed to assist women with secondary breast or ovarian cancer to start these difficult discussions with their family and loved ones. The book provides women with examples of the type of help that palliative care can offer as well as offering quotes and stories from women who have been in a similar situation. Two BCNA Advocates were involved in the development of this resource.
To order a copy of the resource, please contact Cancer Australia on their free call number 1800 624 973, or download a copy via their website.
Updated resources for partners of women with secondary breast cancer
Cancer Australia has updated their audio CD for the partners of women with secondary breast cancer. The CD has been developed with advice, information and support from men who have been there, as well as health professionals who work with women with secondary breast cancer. A BCNA community liaison has been involved in the development of this resource.
Topics covered in the CD include discussing the diagnosis, acknowledging feelings and the impact on family, treatment, managing treatment and the day to day tasks, saying goodbye.
To order a copy of this free resource, please contact Cancer Australia on their free call number 1800 624 973, or download a copy of the CD via their website.
October 2010
FDA approves new dose of Faslodex for women with hormone receptor positive secondary breast cancer
The FDA has granted approval for a 500mg dose of Faslodex (fulvestrant) for the treatment of hormone receptor positive secondary breast cancer in postmenopausal women with disease progression following antiestrogen therapy. The treatment was approved based on research from the phase III CONFIRM Trial (Comparison of Faslodex in Recurrent or Metastatic breast cancer) which found that 500mg significantly reduced the risk of disease progression in women with secondary breast cancer when compared to the 250mg dose. Researchers found that the safety and tolerability of both doses were comparable for women.
Faslodex is available in Australia with women being required to pay for the first 3 months of treatment before being able to access a Patient Access Scheme that is funded by AstraZeneca. Faslodex is not available on the PBS. If you’d like to find out more about the Patient Access Scheme please speak to your treating doctor.
For more information please visit the Medical News Today website.
COSA Consumer Forum: Beyond Cancer – It’s about Living
An upcoming free Forum that may be of interest is the COSA Consumer Forum: Beyond Cancer – It’s about Living being held in Melbourne on Monday 8 November. The program is of particular interest for women with secondary breast cancer as it will cover cancer pain and the emotional aspects of a cancer diagnosis.
To find out more information, please visit the forum registration page and download the program PDF (see link at the bottom of the page).
BCNA’s Hope & Hurdles Pack
For more information and support, BCNA’s Hope & Hurdles Pack has been written by women with secondary breast cancer for women with secondary breast cancer. The pack includes messages of hope and inspiration and a diary to record all medical appointments.
You can also order the Hope & Hurdles Pack online, or by phone: 1800 500 258.
Women living with secondary breast cancer
The BCNA online network is providing a great opportunity for women to share their stories and connect with others in similar situations. One of our members has set up an online group for women diagnosed with secondary breast cancer (also known as advanced breast cancer) to talk about their experiences and support each other.
The group was profiled in the recent edition of the Inside Story, and since then the numbers have grown to over 22 members. If you would like to connect with other women diagnosed with secondary breast cancer in an online setting, this could be the group for you.
To find out more and connect with others, visit the online network group: Women Living with Advanced Breast Cancer
September 2010
Support for women with secondary breast cancer is needed
Researchers in the United Kingdom have found that women with secondary breast cancer do not receive the same support as women with early breast cancer. The researchers spoke to 276 breast care nurses (BCN) and found that the majority of BCN’s felt that they weren’t prepared to care for these women and that the care available was not adequate. BCN’s identified that confusing care pathways make it difficult to identify and care for these women.
For more information about the research please visit the European Journal of Cancer Care website.
Secondary breast cancer diagnosis can lead to feelings of uncertainty, lack of control and emotional functioning in women.
Researchers in the United Kingdom reviewing the literature regarding secondary breast cancer have found that women feel they have uncertainty, lack of control and greater emotional distress as a result of a secondary diagnosis. Women in the studies stated that this feeling was based on uncertainty about the future and media coverage about drugs that are in the early stages of development and are still a long way off from being a cure.
Women described that the need for information, talking to someone about their future and not letting secondary breast cancer dictate every part of their life were ways to gain back control. It was also highlighted that women had greater emotional wellbeing when they didn’t have physical symptoms such as pain, fatigue and insomnia.
For more information about the research please visit the European Journal of Cancer Care website.
August 2010
The experience and preferences of different bisphosphonate treatments for women diagnosed with secondary breast cancer
Research undertaken in the UK with women taking different forms of bisphosphonates, has found that both oral and intravenous therapies are acceptable to most women. The majority of women participating in the study reported that they were happy taking oral therapy; however 9 women reported that the amount of time they needed to be standing up, after taking the therapy was inconvenient. After six months of taking bisphospantes intravenously the majority of women reported that they were happy with the frequency and convenience of taking their treatment, especially if they were receiving their bisphospantes and chemotherapy treatment concurrently. The majority of the women in the study also reported that they had reduced bone pain over time. Visit the Wiley website for more information on this study.
A guide for women with secondary breast cancer
Cancer Australia has updated and re-produced their “Guide for women with secondary breast cancer” which our very own BCNA Advocates, Jennifer Muller and Maria Waters were involved with. The guide provides women with information relating to their diagnosis as well as different treatment options. A hard copy of the guide can be ordered by calling 1800 624 973 or by downloading from the Cancer Australia website (this is quite a lengthy document, and may be impractical to print).
July 2010
Sexual issues in early and late stage cancer
Research from Italy has found that for many health professionals, sexuality issues resulting from cancer treatment and care are not considered to be a major concern, when compared to actually treating the cancer. However the researchers found that when sexuality concerns are ignored, they can become a major issue for the person involved. They found that in particular, those with advanced cancer want to discuss sexuality issues.
Researchers concluded that for sexuality to be openly discussed health professionals need to have good communication skills, have an understanding of the sexuality problems that can be encountered as a result of treatment and being able to discuss the topic in a non judgemental and open manner.
To read more about the research please visit the Supportive Care in Cancer website.
BCNA recently conducted a survey of women with breast cancer from our Review and Survey Group about sexuality issues. To view the results from our research download the Sexuality after Breast Cancer Survey and for more information on sexuality and breast cancer refer to Issue 50 of The Beacon magazine which focused on sexuality.
New European Guidelines for secondary breast cancer
New guidelines have been produced by the European Society of Medical Oncologists on the treatment and care of women with secondary breast cancer. The guidelines contain a number of interesting recommendations, including that women should be involved in all treatment decisions, including in the method of administration of chemotherapy and other drugs (eg oral or intravenous). In addition, the guidelines recommend that all women with HER2+ breast cancers, who are receiving Herceptin, should undergo cardiac monitoring before and after they are treated with Herceptin. Australian guidelines do not include this recommendation.
In Australia the National Breast and Ovarian Cancer Centre produces ‘A Guide for Women with Metastatic Breast Cancer’. This is the consumer friendly version of the clinical practice guidelines for health professionals. For more information download these guidelines from the Cancer Australia website.
BCNA’s Hope & Hurdles Pack has been written by women with secondary breast cancer for women with secondary breast cancer. The pack includes messages of hope and inspiration and a diary to record all medical appointments. To find out more about BCNA’s Hope & Hurdles Pack, or to order a copy, go to the Hope & Hurdles information page within our website or phone 1800 500 258.
June 2010
Potential benefits of biopsies for liver metastases
New research from Italy has found that the biological components of tumours in women with secondary breast cancer (also known as metastatic breast cancer) can change when the cancer spreads to the liver. Researchers undertook biopsies on 255 primary breast tumours and liver metastases in women with secondary breast cancer to determine the status of estrogen and progesterone receptors and HER2. Results found that 14.5% of women had a change in the estrogen receptor status in their secondary tumour, 48.6% of women had a change in their progesterone status and 13.9% of women had a change in their HER2 status. For 12.1% of the women involved in the study, these changes lead to a change in their treatment therapy.
The results highlight that a biopsy of metastases in the liver should be considered for all women when they are safe and easy to perform, as this could influence treatment decisions. For more information please refer to the ASCO website
Women living with advanced breast cancer
BCNA recently launched our new website, which includes a unique online social network, specifically for those affected by breast cancer. An online group just for women living with secondary (also known as advanced) breast cancer has been set up by one of our members. If this sounds like a group that you would be interested in joining you may want to visit our online network. Follow this link to connect with the Living with secondary breast cancer online group.
March 2010
The impact of sleep disturbance on people with secondary cancer and their carers
A substantial number of people with secondary cancer and their family carers experience poor sleep quality, despite reporting a sufficient amount of sleep. This study was conducted at the University of Bristol in the United Kingdom and involved 60 people with secondary cancer and their family carers. Participation in the study involved completion of a sleep history, keeping a sleep diary for seven days, and completing a number of questionnaires assessing sleep patterns. Forty-seven percent of people with secondary cancer and 42% of family carers reported sleeping 8.2 and 7.8 hours per night respectively. Despite this, a significant proportion of participants suffered from disturbed sleep patterns. People with cancer reporting less sleep also reported experiencing more pain. Researchers suggest that health professionals should routinely asked about sleep issues and patterns to identify any possible underlying factors such as pain or anxiety. Visit the ScienceDirect website for more information.
December 2009
Supporting bone health
Research presented at the recent American Society of Clinical Oncology Conference has found that using intravenous (IV) bisphosphonates to treat issues related to bone metastases is safe and well tolerated by women with secondary breast cancer. A group of 159 women with secondary breast cancer who had received the IV bisphosphonates, zoledronic acid, pamidronate, or both treatments for two year period were identified.
Researchers measured the level of osteonecrosis of the jaw (a disease that causes weakness of the bones) and decreased kidney function. Researchers found that after an average time of 39 months, only a small number of women (3.8%) experienced osteonecrosis of the jaw or decreased kidney function (11.9%). Women who experienced either of these side effects received treatment and stopped taking IV bisphosphonates during this time. Once treatment for the side effects had concluded, 89.4% of women were able to resume taking IV bisphosphonates. Visit the American Society of Clinical Oncology website for more information on the long-term treatment with intravenous bisphosponates.
November 2009
Group therapy helps women with secondary breast cancer manage pain
Hypnosis and group therapy can help women with secondary breast cancer manage pain symptoms. A study reported in Health Psychology found that women who were open to hypnosis reported less intensity of pain and suffering over time associated with their breast cancer, but no association was found with the frequency of pain episodes. Women also reported using the technique outside of therapy sessions to monitor other symptoms they experienced. The researches suggest that hypnosis can assist women manage pain and supports the use of the technique in treating people with disease related pain. Visit the American Psycological Association website for more information on the effects of supportive-expressive group therapy.
Support services for women with secondary breast cancer
Women often think that palliative care services are just about end of life care, however as new guidelines show, palliative care provides support and care for people with chronic illnesses. Currently in the United States, national guidelines are being developed to ensure formalised quality of care, resources and research opportunities are available. The process of developing guidelines has been affected by the increasing number of people requiring care, and a decrease in workforce numbers.
In Australia, palliative care guidelines can be found within the National Palliative Care Strategy on the Department of Health and Ageing website.
Palliative care can provide a range of services for people with chronic conditions, including pain management, massage, art therapy and music therapy. It is not just end of life care. Visit the Palliative Care Australia website and following the link to your state.
Download issue 15 of The Inside Story - one of BCNA's Advocates, Julie Pallot, shares her personal experience of accessing palliative care services and the benefit she has gained from this service.
August 2009
Calcium levels and treatments for bone metastases
Researchers from the Istituto Clinico Humanitas in Italy have found that Zoledronic acid, used to treat bone metastases, may result in hypocalcaemia (low calcium levels in the blood) and an increase in creatinine in the blood, resulting in a reduction in bone density. Ninety-three of the 240 participants developed hypocalcaemia on average 2.3 months after beginning treatment. Increased creatinine in the blood was seen in 33 of the 240 participants on average 4.7 months after treatment. The results support the need for monitoring of both hypocalcaemia and creatinine levels in the blood to promote bone health. Visit the The Oncologist website for more information around symptom management and supportive care.
A new guide for UK women living with secondary breast cancer
A new guide has been developed for women in the UK who are living with secondary breast cancer. Research by Breast Cancer Care, a UK based organisation, found that 50% of women with secondary breast cancer in the UK did not receive information to support their emotional well being, and one third stated that information and support received at diagnosis did not support their information needs. The guide aims to bridge this gap for women with secondary breast cancer. Visit the Hope & Hurdles section of the www.bcna.org.au website for more information on resources designed to support women with secondary breast cancer in Australia.
Supporting relatives providing end-of-life care
Relatives providing informal care to loved ones want more information about providing practical support during end-of-life care. A study by the University of Manchester has found that there is a lack of practical support for relatives providing end-of-life care, resulting in trial and error methods to provide this care. Researchers suggest that nurses and health care professionals could support home-based carers by providing education and information about practical nursing skills to help them support their loved one during home based end-of-life care. Visit the National Center for Biotechnology Information (NCBI) for results of a systematic review examining the practical information needs of caregivers providing end-of-life care to people with Advance cancer.
June 2009
Counselling has benefits for people with cancer and their families
Researchers from the University of Navarra in Spain recommend that both people with cancer and their families should have access to counselling and support services in the event of a recurrence of cancer. Issues such as uncertainty, distress and concerns about death resurface when a family member is diagnosed with a recurrence of cancer. Visit the Wiley InterScience website for more information on psychosocial impact of recurrence on cancer survivors and family members.
Breast cancer can change over time
A Canadian study has found that breast cancers can change over time and as a result, metastatic tumours may require different treatment from the initial tumour. Researchers compared biopsy results from the initial diagnosis with biopsy results for metastatic breast cancer. While still early findings, these results suggest that Oncologists may be able to alter treatment to respond to the different diagnosis. Visit the Medical News TODAY website for further information.
New test for metastatic disease
Researchers at the Weill Cornell Medical College in the United States have identified a new marker to assist in testing for cancer metastases. The marker is called Tumour Microenvironment of Metastasis (TMEM) and has shown an association with the development of distant metastasis. The study found that the density of the TMEM was almost double in women who had developed metastatic disease, than women with localised breast cancer. The test is still at trial stage and the next step will be larger scale study to validate the results. Visit the Medical News TODAY website for further information.
April 2009
Women with metastatic breast cancer want better information
A recent US study has found that women with metastatic breast cancer feel dissatisfied with the amount and quality of information available to them. Musa Mayer, long time advocate for women with metastatic breast cancer, discussed the results of this study at the St Gallen Oncology Conference held in Switzerland recently. The US based study found three out of four women searched for information, particularly about emotional and psychological well being, with only 51% saying the information they found was sufficient for their needs. Women said they would like information that is easily accessible, high quality and that promotes public awareness about metastatic breast cancer. Visit MedPage TODAY for more information.
For more information from visit the Hope & Hurdles page within our website for vital and unique information resource for Australian women living with secondary breast cancer.
Increased public awareness of metastatic disease significant to women
Professor Lesley Fallowfield presented results of the BRIDGE study at the St Gallen Oncology Conference in Switzerland on 16 March 2009. Women with metastatic disease reported that they felt afraid to talk openly about their experiences due to a lack of understanding by the general public. Professor Fallowfield highlighted that in most countries, the public face of breast cancer has primarily focussed on the early stages. She also suggests that improved understanding will help women with metastatic disease feel part of the broader breast cancer community. Results of the BRIDGE study also showed that many women with metastatic disease consider themselves to be survivors and focus on enjoying fulfilling lives. Visit the Medical News TODAY website to view the full article.
Herceptin treatment and brain metastases
Researchers from Sungkyankwan University School of Medicine, South Korea investigated the role of Herceptin on brain metastasis (BM) in women with HER-2 positive breast cancer. The records of 256 women were reviewed, and two groups were identified, one of women who did not have Herceptin therapy and those who did. Results suggest that the women who were treated with Herceptin had a longer progression time before developing BM than those who were not treated with Herceptin. Visit the clinical study British Journal of Cancer article for more information.
Anthracyclines and taxanes in treatment for metastatic disease
A retrospective study by an international team of researchers has compared progression-free survival in women with metastatic breast cancer, treated with Gemzar (Gemcitabine) (GD) or Xeloda (Capecitabine) (CD). The 305 participants were randomly assigned into two groups to receive GD or CD. Both GD and CD were combined with Docetaxel, and all participants had received Anthracycline prior to other treatment. For overall survival, overall response rate and progression-free survival, no difference was observed between GD and CD. The length of time to progression of cancer was longer in the GD group than in the CD group. Visit the Journal of Clinical Oncology for more information.
