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Breast Cancer Care blog

I have a frozen shoulder. Is it safe to have steroid injections or surgery on my lymphoedema ‘at-risk' side?

Our Helpline often gets calls from people who have had surgery to their lymph nodes as part of their breast cancer treatment and who are now worried about their risk of lymphoedema or have already developed it.

It can be hard to remember all the dos and don’ts of caring for your ‘at-risk’ arm. Add into this a frozen shoulder or carpal tunnel syndrome (a common condition that can cause pain, numbness and tingling in hand and fingers) on the ‘at-risk’ side, and there are many questions about treatment for these painful conditions and lymphoedema.

On the Helpline recently, a  caller had been advised to have a steroid injection for her frozen shoulder and she wasn’t sure what to do. She was aware that guidance suggests avoiding any injections in the ‘at-risk side’ but she was experiencing a lot of pain and had tried all other options. This is the dilemma that many patients face especially if they have exhausted all other options for pain relief.

Tell the people treating you

Before you go ahead and have a steroid injection, tell the doctor treating you that you have had surgery for breast cancer and that you're at risk of lymphoedema.

If you are already being treated for lymphoedema, tell your lymphoedema therapist about any planned steroid injections or surgery. They're likely to want to see you soon after any procedure.

Being extra careful with your skin care regime and wearing your compression garment before the procedure may help keep the swelling afterwards to a minimum. Specialised massage (manual lymphatic drainage) can also help to reduce swelling.

If you have lymphoedema and get recurrent infections (cellulitis) a course of antibiotics might be recommended while you are undergoing treatment. Again, make sure the doctor treating you knows about your risk of infection. 

If you need to have surgery and you also have lymphoedema it will probably take your arm longer to recover bit it will still be important to move and keep active to help minimise any swelling.

Once you've recovered from your surgery, remember  to use all the advice you were given about reducing the risk of lymphoedema or managing your lymphoedema.

Download  or order our booklet Reducing the risk of lymphoedema

Risks and benefits

Despite the risks of surgery, for some people the benefits far outweigh the risks, and many people recover well without any further problems.

You may find it helpful to talk to others in a similar situation by going on to our Forum.

 

Post date: 24 April 2014

Commenting on the decision today (23 April 2014) by the National Institute for Health and Care Excellence (NICE) not to recommend trastuzumab emtansine (also known as Kadcyla and made by Roche Pharmaceuticals) for the treatment of HER2 positive advanced breast cancer, Emma Pennery, Clinical Director at Breast Cancer Care said:

“It’s extremely disappointing news for those living with advanced breast cancer and their families that yet another treatment has not been recommended by NICE. Kadcyla can mean those facing limited treatment options live longer and with fewer severe side effects, such as being sick, vastly improving their quality of life.

“We recognise that decisions about approval of cancer drugs are based on many complex factors, but we are concerned by the increasing number of people we support telling us how anxious they are about being able to access treatments when they need them. Kadcyla offers people with HER2 positive advanced breast cancer a unique combination of chemotherapy and targeted therapy in one agent.

“We await the results of the consultation period and the final guidance from NICE and hope Kadcyla will become widely available for eligible patients.”

 

Ends

For media enquiries contact:
Sophie Howells/ Sophie Softley Pierce
sophie.howells@breastcancercare.org.uk / sophie.pierce@breastcancercare.org.uk
0207 960 3450/3505
Out of office hours: 0770 290 1334

About Breast Cancer Care
Breast Cancer Care is the only specialist breast cancer support charity working throughout the UK. We were founded in 1973 by Betty Westgate, who was herself diagnosed with breast cancer. In the ensuing forty years we have supported millions of women and their families through our face-to-face, phone and online services. We also provide training, support and networking opportunities to specialist breast cancer nurses, and Breast Cancer Care publications are used by the majority of breast cancer units throughout the UK.  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.

Post date: 23 April 2014

The National Institute for Health and Care Excellence (NICE) has said that a drug called T-DM1 (Kadcyla), which is used to treat a type of secondary breast cancer, is ‘“unaffordable” for the NHS’. The statement was made in draft guidance published today.

Responding to the news, Emma Pennery, Clinical Director at Breast Cancer Care, said: ‘It’s extremely disappointing news for those living with advanced breast cancer and their families that yet another treatment has not been recommended by NICE. Kadcyla can mean those facing limited treatment options live longer and with fewer severe side effects, such as being sick, vastly improving their quality of life.’

Secondary breast cancer occurs when cancer cells from the breast have spread to other parts of the body such as the bones, lungs, liver or brain. While drugs can be used to control secondary breast cancer, often for several years, it cannot be cured.

What is T-DM1?

T-DM1 (also known as trastuzumab emtansine or by the brand name Kadcyla) consists of two drugs linked together: a targeted therapy called trastuzumab (Herceptin), and a chemotherapy drug called DM1 (also known as emtansine).

It delivers the chemotherapy drug DM1 directly into the breast cancer cells, where it can destroy the cancer cells but leave normal cells relatively unharmed. This means that people in clinical trials had fewer side effects than with standard chemotherapy drugs alone.

Find out more about T-DM1, including its potential side effects.

T-DM1 can be used to treat people with HER2 positive secondary breast cancer or regional recurrence (where surgery is not possible), who have already had trastuzumab and chemotherapy drugs called taxanes, either together or separately.

What does NICE’s decision mean?

If NICE doesn’t recommend a drug, it won’t be routinely prescribed by doctors in the NHS.

Currently, NICE’s guidance is in draft form. The final guidance will be published following a consultation period.

In the meantime, T-DM1 may be available through the Cancer Drugs Fund in England.

Information about secondary breast cancer

You can find more information on treatments for secondary breast cancer and living with secondary breast cancer on our website.

Breast Cancer Care’s free and confidential Helpline is available to anyone with questions about secondary breast cancer – call 0808 800 6000 for more information.

Read Breast Cancer Care’s full comment on NICE’s decision.

Post date: 23 April 2014

Our long-running one-to-one peer support service is being relaunched under the name Someone Like Me.

Every year we put hundreds of people in touch with one of our trained volunteers for emotional and practical support. Time after time, the feedback shows how much people get from the chance to talk to someone who understands how they are feeling because they've been through it too.

‘Speaking to someone who had had such a similar diagnosis and treatment and who had felt all the things I was feeling was absolutely invaluable. Unless you have been there, with the best will in the world, you can't understand how a diagnosis of breast cancer can affect you in so many different ways.’

Our pool of nearly 200 volunteers bring a huge wealth of experience. So, whether you want to talk to someone who is older or younger, single or in a relationship, with children or without, career-focused or not, the chances are that we can find someone.

We have volunteers with personal experience of a huge range of treatments and reconstructions, as well as partner volunteers who know what it’s like to support someone you love through breast cancer.

Changing our name to Someone Like Me will help us to make sure more people hear about the service and have the chance to benefit from the unique individual support it offers.

Find out more, email someonelikeme@breastcancercare.org.uk or call 0845 077 1893.

Post date: 16 April 2014

If you or someone you love needs support during the long Easter weekend, our online Forum is always open.

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We know that holiday periods can be especially difficult for many people affected by breast cancer. For example, if you're waiting for results or you're caring for someone who is unwell at home. There are lots of people on the Forum who have been through similar experiences.

Helpline Easter hours

The Helpline will be closed on Good Friday 18 April, Easter Saturday 19 April and Easter Monday 21 April.

Normal opening hours are 9am-5pm weekdays and 10am-2pm Saturdays.

Helpline staff are here to talk through worries and concerns and to tell you where you can get further support and information.

Calls are answered by nurses and trained staff with experience of breast cancer. Whatever your concern, we'll understand the issues you might be facing, and you can be confident that any information you receive is accurate and up-to-date.

Our website and the online Forum are available 24-hours a day, seven days a week.

Post date: 15 April 2014