Home / News / Blog / Widespread confusion about secondary breast cancer, suggests research

Widespread confusion about secondary breast cancer, suggests research

SophieH_BCC
Friday, 12 October, 2012 - 09:38

Secondary breast cancer is widely misunderstood in the UK despite breast cancer’s high public profile, according to new research published today (Friday 12 October) by Breast Cancer Care ahead of Secondary Breast Cancer Awareness Day (13 October).

An ICM poll of 2,000 adults[i] commissioned by the UK’s leading breast cancer support charity found that although most British adults (83%) correctly assumed that breast cancer can spread to other parts of the body, over half (54%) admitted they did not know what secondary (advanced) breast cancer was or mistakenly thought it wasn’t life threatening.

In fact, a diagnosis of secondary breast cancer means that cells from the primary breast cancer have spread to other parts of the body (often the bones, lungs, liver or brain) and while symptoms can be managed and controlled, the cancer can no longer be cured. Thousands are living with the disease and frequently feel isolated and experience gaps in care.

The research also revealed that people are unsure of what it means to live with secondary breast cancer day-to-day. Over half (54%) were uncertain as to whether someone with a secondary breast cancer diagnosis would be able to work and 43% either didn’t know or incorrectly thought that people with secondary breast cancer would not be able to travel and go on holiday. While this is not possible for all, with the right support and clinical management, a significant number of women can continue to lead full lives for a long time.

To mark Secondary Breast Cancer Awareness Day 2012 Breast Cancer Care’s 'A day in the life' campaign hopes to clear up some of these widespread misconceptions and show the need for better support for those living with such uncertainty through a series of short films. Breast Cancer Care is also encouraging people to take action and demand better provision of care for secondary breast cancer patients.

Lesley Frame, 39, is a radiographer and mum. She was diagnosed with secondary breast cancer more than seven years ago. She works four days a week and cares for her eight-year-old son. She said: 

In my role as a radiographer, I sometimes tell patients dealing with their own breast cancer diagnosis that I have secondary breast cancer and that I’m living and working; leading as normal a life as possible.

I don’t think there is a lot of understanding with a condition like mine. You can be living with secondary breast cancer but yet people think you get it and die soon after.       

Despite the confusion about what it means to have secondary breast cancer, over two thirds (67%) of those surveyed recognised that people with advanced disease have different support and information needs than people with a primary breast cancer diagnosis. The majority (85%) agreed that levels of support should be the same for everyone with a breast cancer diagnosis.[ii]

Lesley feels strongly about the lack of support available:

'It’s just not there. A support group I was referred to at my hospital just wasn’t appropriate for someone with secondaries. After a few times I just thought, 'I shouldn’t be at this, it’s not for me', so I left.

Samia al Qadhi, Chief Executive of Breast Cancer Care, said:

We know from the many women we support and talk to that so many living with secondary breast cancer continue to experience a very real sense of isolation and do not get the level of support offered to those with a primary breast cancer diagnosis.

As A Day in the Life aims to show, many are trying to lead their lives as normally as possible while also managing side effects, living with uncertainty day to day, thinking about their family’s future, and making difficult decisions about end-of-life care.

We know that until there is greater understanding about secondary breast cancer, people living with
the diagnosis may not receive the support they need. This campaign is designed to give people with secondary breast cancer a voice and galvanise campaigners to fight for a better deal for everyone with this diagnosis.

I’d like to urge everyone to take a few moments to take action to improve standards by visiting our website and speaking out about it to everyone they know.

To view the films and find out more about campaigning for change for people with secondary breast cancer, visit www.breastcancercare.org.uk/secondary.

 

Ends

Notes to editor

*ICM interviewed a random sample of 2,053 adults aged 18+ in GB online between 1 and 2 August 2012. Surveys were conducted across the country and have been weighted to the profile of all adults.  ICM is a member of the British Polling Council and abides by its rules.  Further information at www.icmresearch,com.

About Breast Cancer Care

When breast cancer and its treatment overshadow everything, we see the woman underneath. Breast Cancer Care is the only UK-wide charity dedicated to providing emotional and practical support for anyone affected. Our free Helpline, information-packed website and online forums offer a friendly ear and expert information to those dealing with this life-threatening disease. Across the UK we offer a range of confidential, face-to-face services for people living with and beyond breast cancer. We campaign for better support and care, and promote the importance of early detection, involving people with breast cancer in all that we do.Visit www.breastcancercare.org.uk or call our free Helpline on 0808 800 6000.

About secondary breast cancer

There are around 36,000 people with secondary breast cancer in the UK.  Secondary breast cancer occurs when breast cancer cells spread from the first, primary cancer in the breast to another distant part of the body via the bloodstream or lymphatic system.  This type of spread is also known as metastases, advanced breast cancer or stage 4 cancer. A diagnosis of secondary breast cancer means that the cancer cannot be cured, although it can be treated and controlled, sometimes for years.


[i] ICM interviewed a random sample of 2,053 adults aged 18+ in GB online between 1 and 2 August 2012.  Surveys were conducted across the country and have been weighted to the profile of all adults.  ICM is a member of the British Polling Council and abides by its rules.  Further information at www.icmresearch,com

[ii] A survey of breast care nurses by Breast Cancer Care found that over half (57%) feel that support is inadequate for women whose breast cancer has spread to other parts of the body (Reed, E., Scanlon, K. and Fenlon, D. (2010). 'A survey of provision of breast care nursing for patients with metastatic breast cancer – implications for the role'. European Journal of Cancer Care, 19(5), 575-80)

Comments

Re: Widespread confusion about secondary breast cancer, ...

I have secondary breast cancer.  I would like to talk, on the phone, to someone else with the same diagnosis.  I do not live near enough to any of the cities where the support groups are organised.  All I have been offered is a chat line but it is at a time I cannot manage. I feel quite isolated as if I'm the only person in my area with the same condition.Is there anyone out there who feels the same way?

Re: Widespread confusion about secondary breast cancer, ...

Hello

Sorry to hear you are feeling so isolated with your diagnosis of secondary breast cancer. You are wondering if there is anyone in your area that feels the same way. You may want to look at our forums to see if there is anyone in your area:

[url=http://www.breastcancercare.org.uk/community/forums/talk-others-similar-situation/your-area]http://www.breastcancercare.org.uk/community/forums/talk-others-similar-situation/your-area[/url]

If you want to post a message, all you have to do is register:

[url=http://www.breastcancercare.org.uk/user/register]http://www.breastcancercare.org.uk/user/register[/url]

If you are in touch with your breast care nurse, she may be able to put you in touch with someone with a similar diagnosis in your local area.

We also run Living with Secondary Breast Cancer sessions where there is a chance to meet with others in a similar situation. Although you have said you don't live near enough to where the groups are being run, we have got 4 more groups starting in various places in the country. You can call 08450771893 or email secondaryservices@breastcancercare.org.uk for more details or click on the following link:

[url=http://www.breastcancercare.org.uk/breast-cancer-services/talks-courses-local-support-1]http://www.breastcancercare.org.uk/breast-cancer-services/talks-courses-local-support-1[/url]

You would also be welcome to call our free confidential helpline on 0808 800 6000 and speak to one of our nurses or trained workers. The lines are open from 9-5 Monday-Friday and 10-2pm on Saturday

Kind regards
Nursing Team

Add a comment

Type the characters you see in this picture. (verify using audio)
Type the characters you see in the picture above; if you can't read them, submit the form and a new image will be generated. Not case sensitive.