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Breast Cancer Care blog

This Tuesday saw a debate in Parliament on secondary breast cancer, the first time it has been debated for a number of years. Tabled by Annette Brooke MP, one of the co-chairs of the All-Party Parliamentary Group on Breast Cancer, MPs used the opportunity to raise a number of issues facing people living with secondary breast cancer. Encouragingly, the government responded during the debate, recognising the need to do more to support people with a secondary breast cancer diagnosis.

In her opening speech, Annette highlighted the difference in the standard of care that many people experience following their primary diagnosis and their secondary diagnosis. She pointed out that it's far less common to have access to a clinical nurse specialist and that many are not being referred to a palliative care team at an early enough stage for important symptom control and pain management.

Improving care and support

Annette also drew attention to the work of Breast Cancer Care in improving the care and support for secondary breast cancer, including our Taskforce, which brought together all the issues for the first time, as well as our more recent petition, which has secured over 12,000 signatures.

Other MPs contributed with points about making sure that psychological needs are met, as well as ensuring that care is also improved in Scotland, Wales and Northern Ireland.

Underpinning all of these issues, Annette explained that the collection of data on secondary breast cancer was inadequate. Despite it being mandatory for hospitals to collect information about their secondary breast cancer patients, no data has been published yet. This means that health services cannot be planned properly around the needs of people living with the disease.

In response, Jane Ellison MP, Public Health Minister and speaking on behalf of the government, recognised the importance of supporting people with secondary breast cancer. She accepted that there was room for improvement in the collection of data. She also reiterated the government’s ambition to be the best in the world in cancer care and said that more was to be done in order to achieve this.

While there was no vote on this debate, what was said shows that momentum is growing. We'll continue campaigning to make sure that everyone with secondary breast cancer gets the care and support they need. We see this debate as another step towards helping us to achieve that.

Watch the debate or read the full transcript.

Post date: 27 November 2014

Hair loss is just one of the side effects of treatment for breast cancer but, for many women, it can be among the most distressing. Having all the facts about hair loss and guidance on what to do before, during and after your hair falls out can help to lessen the emotional impact it has.

We’ve recently updated our booklet Breast cancer and hair loss. This discusses the treatments that can cause hair loss, the emotions it may cause and what other people’s reactions might be, as well as offering practical advice on dealing with hair loss. We've also expanded the amount of imformation on our website about hair loss.

It’s really important to us that we use images of real people affected by breast cancer in all of our publications, none more so than in the hair loss booklet. We’re really grateful to the women who came along to our photo shoot earlier in the year while they were themselves experiencing hair loss and agreed to have their photos taken for the booklet.

They also spoke on camera about their experience of losing their hair for a short video, which you can view below.

 

Post date: 26 November 2014

More than 45,000 people turned out to the Breast Cancer Care international match at Wembley Stadium yesterday to watch England Women play Germany.

The match was the first time that the England Women’s team have played at the new Wembley Stadium and it was a huge success, despite England being beaten 3–0.

Wembley goes pink

The game kicked-off with the help of Breast Cancer Care Ambassador Alexandra Burke and was broadcast live on BBC2 to thousands of homes across the UK. Wembley Stadium itself was awash with pink: the arch turned pink, the players all had bright pink laces on while the mascots donned orange and pink Breast Cancer Care T-shirts too.

We also created a special breast awareness video, which was shown at the match. We asked people to share it on social media as part of our new #ShareItSunday. It’s not too late if you want to share it too.

The fundraising total from the event is still being calculated, but our Chief Executive Samia al Qadhi received a cheque for £75,000 at half-time. There was also a team of brightly dressed volunteers bucket collecting at the stadium on the day.

Pass It On campaign

This match was part of our new Pass It On campaign with The Football Association, which is set to run over the next two years.

Together we hope to reach thousands more people across the nation with the charity’s vital breast awareness message while also raising £500,000. The money will go to ensure we can continue to offer free caring support and information to people affected by breast cancer through our specialist nurses, local services and vital emotional support network.

Become part of the partnership today

Post date: 24 November 2014

When people are diagnosed with breast cancer, they often wonder whether this means other people in their family will be at greater risk of developing the disease.

But most breast cancers don’t increase the lifetime risk for other family members and aren’t passed on through genes.

In a small number of families, several closely related people have breast or ovarian cancer diagnoses. This points to genetic factors, which means other family members have an increased risk of developing breast cancer.

Altered genes

If this is happening in your family, you can ask you local doctor (GP) for a referral to a family history clinic or cancer genetics centre to find out whether you have inherited an altered gene that can cause breast cancer.

About 5% of all breast cancers are caused by an altered gene. The most common of these are called BRCA1 and BRCA2.

Going through genetic testing and being given a diagnosis of an altered gene can be daunting. It means having to make serious decisions about risk-reducing treatments. And, because it is not common, you might feel isolated and find it hard to meet other people in a similar situation to share worries and experiences.

We can help

Our Someone Like Me service – where trained volunteers offer phone support for people affected by breast cancer – now has a new team of volunteers made up of people who have had a genetic diagnosis. Jo is one of the team. She said:

5673 ‘I was diagnosed with having the BRCA1 altered gene nine years ago at the age of 30.

‘My mother had breast cancer at age 43, and both her mum and sister died young from ovarian cancer.

‘My sister was given the all clear from the genetic testing, which left me feeling like it was a road that I would have to walk alone. I knew I needed to take preventive steps and opted for immediate surveillance.

‘After getting married and having my family, I decided I wanted to have a prophylactic double mastectomy and hysterectomy.

‘I was fortunate to be well supported by my genetics team, but through the years I’ve met other women in a similar position and realised not everyone had that support.

‘I feel passionate about being able to support other women through the Someone Like Me service, making sure no one feels they’re alone when faced with big decisions about their own futures.’

 If you’d like to talk to Someone Like Me about dealing with family history, genetic testing and genetic diagnosis:

Find out more about Someone Like Me

Post date: 24 November 2014

Most younger women with breast cancer are not being referred to a fertility clinic before their treatment begins, even though some breast cancer treatments can cause infertility.

A Breast Cancer Care survey of women under 45 having treatment for breast cancer found that 88% weren’t offered the chance to see a fertility specialist.

This means up to 5,000 younger women a year in the UK may be missing out on discussing fertility options, including freezing eggs or embryos, ahead of their treatment.

Samia al Qadhi, Breast Cancer Care’s Chief Executive, said: ‘This is an unacceptable situation as breast cancer is a disease which robs many women of a chance to start a family. We urgently need all healthcare professionals to talk to women about their fertility options at the point of diagnosis.’

An important issue

Some breast cancer treatments, such as chemotherapy, can affect your ability to become pregnant in the future. Therefore, it’s important to discuss any fertility concerns with your specialist team before treatment. Your specialist team should offer to refer you to a fertility specialist to discuss the option of preserving your fertility.

Fertility guidelines from the National Institute for Health and Care Excellence (NICE) state that women should be offered appropriate procedures to preserve fertility if their cancer treatment may lead to infertility, as long as they’re well enough to have the procedures and this won’t worsen their condition. The guidelines also say that the usual conditions for deciding whether someone can have fertility treatment shouldn’t apply to women with cancer.

You can read more information about discussing fertility options before treatment, including a list of questions to ask a fertility specialist.

Lack of information

5712 Catherine Coombe, 45, from South Wales, was diagnosed with breast cancer five years ago at the age of 39. She said:

'I was single and wasn’t offered the opportunity to speak to a specialist about preserving my fertility. Despite having a nursing background, I didn’t fully realise the damaging impact treatment would have on my fertility.

‘It was only much later I realised the option of having my own children was gone and that has made moving forward from my diagnosis so much harder. Just having the opportunity to discuss options with the right people would have been invaluable in helping me.’

Breast Cancer Care also surveyed 50 breast cancer oncologists, surgeons and nurses. Worryingly, over a third of them did not tell their younger patients at diagnosis how treatment could affect their fertility, leaving them completely unaware of the risks.

‘The worry is that the results of our research are reflective of practice UK-wide,’ said Grete Brauten-Smith, Breast Cancer Care’s Clinical Nurse Specialist for younger women. ‘A consultation with a fertility expert might not mean a guaranteed pregnancy but we must ensure women have the chance of considering their options. Only then can they make an empowered decision about their future fertility.’

Campaigning for better standards of care

Breast Cancer Care’s Standards of care for younger women with breast cancer highlight the care and support that all younger women with breast cancer should receive.

These state that every younger woman should:

‘Be offered a prompt referral to a fertility specialist (even if they have no partner) to discuss the options for trying to preserve fertility before starting chemotherapy or hormone treatment. Every breast oncology service should have processes in place for prompt referral to a fertility specialist who can provide assisted conception. The referral should not depend on local in vitro fertilisation (IVF) funding arrangements. Women should be given information about the chances of success from fertility treatment and the possible impact of delaying breast cancer treatment.’

We’re campaigning for all younger women to be offered a referral to a fertility expert at diagnosis. This will ensure they can make informed choices about their future fertility.

Join our campaign

You can read more about the results of the survey in our press release.

Post date: 24 November 2014