Breast Cancer Care: Groundbreaking new guide for patients with secondary breast cancer

The UK’s first guide to help secondary breast cancer1 patients struggling to access necessary levels of support and care has been launched today.

Research from Breast Cancer Care has shown that almost 50 per cent of secondary breast cancer patients were not offered information on vital emotional and psychological support services, leading to feelings of isolation and abandonment for them and their families at a crucial time. Nearly a third of patients also reported that the information and support they received was worse when compared with that offered at their primary diagnosis2.

This is despite a range of government and NICE guidance3 detailing the level of care and treatment that should be offered to the estimated 100,0004 people living with the disease in the UK.

Breast Cancer Care’s new Standards of Care highlights 10 key areas where patients should expect to receive appropriate care to enable them to live with their diagnosis, including access to emotional and psychological support, expert palliative care and financial and employment information.

When Denise Bartup, 47, from Brighton was diagnosed with secondary breast cancer in 2001, she experienced appalling gaps in the emotional support she was offered. Denise said this was in stark contrast to her primary diagnosis which is why she is supporting the Standards of Care.

“I’ve never felt as alone as I did when my breast surgeon told me that my cancer had spread. There were so many more emotions to deal with than when I had my primary diagnosis, but so little practical help. I wanted to talk to someone in a similar situation, but the oncologist back then just said that his job was to manage the cancer and he couldn’t help me with my emotional needs.

“Without a breast care nurse, I had no idea where to look for psychological support. My GP at the time only offered me anti-depressants and even when I was in hospital for treatment, no one picked up on the fact that I wasn’t coping well and at times was feeling suicidal. I felt abandoned by the people I needed most.

“It worries me that there are other women who don’t know what care they are entitled to or how to go about obtaining emotional support. I worry others could be left feeling as I did.”

The Standards of Care have been developed in conjunction with people living with secondary breast cancer and have been informed by the findings of Breast Cancer Care’s Secondary Breast Cancer Taskforce, a two-year investigation led by experts and patients in to the needs of those living with the disease5.

Dame Joan Bakewell, Patron of Breast Cancer Care, who lost her sister to breast cancer, said:

“As medical advances in treatment mean that more people are living longer with secondary breast cancer, it is essential that the care and support services provided for this group keep pace.

“Secondary breast cancer patients should expect to receive the highest standard of clinical care from the point of diagnosis, but it is vital that patients are viewed holistically, taking in to account the emotional needs of the person, not just the disease.

“Breast Cancer Care’s campaigning work and these Standards will make sure the needs of those living with the disease are heard.”

Jane Hatfield, Director of Policy and Research at Breast Cancer Care, said that as well as giving patients the information they need to improve their own care, the guide will also provide ideas on how to campaign to drive up standards for other patients.

“We understand that every patient’s needs are different, so these Standards of Care can be used in a variety of ways, either by patients in meetings with their clinicians to improve their own care and, for those who are able, to effect change in local services for other patients by, for example, engaging with their Cancer Networks.

“Through working together with patients, healthcare professionals and policy makers Breast Cancer Care aims to see all patients with secondary breast cancer receive the highest standards of care possible.”

For more information or to order a free copy of the Standards of Care, visit www.breastcancercare.org.uk or call freephone 0808 800 6000.

Notes to editors:

1- A diagnosis of advanced or secondary breast cancer means that breast cancer cells have travelled to another part of the body, such as the liver, lungs or bones. Secondary breast cancer is not curable but thanks to advances in medical treatments the disease can be controlled for months and in some cases years.

2- Breast Cancer Care (2008), England Health Check, Breast Cancer in England Survey. Between February and March 2008, a Breast Cancer Care questionnaire was distributed to 1,300 people diagnosed with breast cancer in the last three years in England. A total of 849 people responded, and 61 of these had secondary breast cancer.

3- NICE ‘Advanced breast cancer’ guidance, February 2009 and ‘Improving supportive and palliative care for adults with cancer’, 2004.

4- Johnston, SRD & Swanton, C. (2006) Handbook of Metastatic Breast Cancer. Informa Healthcare.

5- The Secondary Breast Cancer Taskforce was a two-year initiative, set up in 2006 by Breast Cancer Care in recognition that people with metastatic (secondary) breast cancer were not receiving the best possible standard of care. A national coalition of healthcare professionals, charities, policy makers and people with metastatic breast cancer, the Taskforce identified gaps in the treatment, support and care of people living with metastatic breast cancer, through surveys, research and expert consensus.