Many people associate palliative care with the end of life. But evidence suggests the earlier people with secondary breast cancer are introduced to palliative care the better their quality of life.
According to national guidance people diagnosed with secondary breast cancer should be offered the option of palliative care early after their diagnosis. But according to Tara Beaumont Community Macmillan Palliative Clinical Nurse Specialist there’s a lot of confusion about what palliative care is and when it should be offered.
‘The word “palliate” means to alleviate or make better’ says Tara ‘so palliative care is about managing the symptoms of cancer or the side effects of treatment. Palliative care often takes a “holistic” approach and involves physical psychological spiritual and social aspects.
‘Lots of people including some healthcare professionals think palliative care is just about the end of life but this isn’t the case. Some people with secondary breast cancer do want to talk about their choices and make plans for the future and that’s a part of palliative care but it’s a small part.'
During Breast Cancer Awareness Month in 2014 Breast Cancer Care carried out a survey about secondary breast cancer. Seventy per cent of the 204 people who completed the survey associated palliative care with the end of life.
‘Many women who have talked to Breast Cancer Care think it may help to refer to it as “supportive care”' says Tara. 'The aim of supportive and palliative care is not to cure cancer but rather to manage symptoms and side effects of treatment and help you live as well as possible with your condition.’
How can palliative care help?
Two of the most common symptoms or treatment side effects people with breast cancer experience are pain and cancer-related fatigue and palliative care can help manage both of these.
‘All treatments for cancer come with side effects’ says Tara ‘and many people think they just have to put up with them. But this isn’t true. While we can’t promise to get rid of side effects completely we can help you manage them better.
‘Palliative care might involve treatment to control pain. But equally it could involve having complementary therapies. Or you might want to see a physiotherapist who has experience in helping people with cancer.
‘Help and support may also be available for family members or carers of people with cancer.’
Palliative care might be given in a hospital or hospice and sometimes in a person’s home.
How can I access it?
How you access palliative and supportive care will vary depending on where you live. You can discuss what support is available in your area with your specialist breast care team or GP (local doctor) who can refer you.
Palliative care teams may be based in hospitals as well as hospices or in the community. Many hospices have day patient services and people often receive support in their own home with cover available in the evenings during the night and at weekends if necessary.
Teams might include specialist nurses (who may be Macmillan nurses) doctors and other healthcare professionals such as psychologists social workers physiotherapists occupational therapists and lymphoedema practitioners. Often complementary therapies – such as aromatherapy – are also offered which many people find improves their wellbeing.
As well as having a wealth of expertise on symptom control and emotional support the palliative care team can also discuss any personal wishes you may have when planning end-of-life care and help ensure these are carried out.
‘I can’t praise palliative care enough’
Moira Marshall from Glasgow says: ‘I had a lot of fears initially. People have a lot of preconceptions about palliative care. I immediately thought – no that’s not for me! It’s about taking that first step. But Donna my Specialist Care Manager from Macmillan along with the nursing team suggested I try it and allayed my fears. I had to go to my GP and ask to be referred.
‘I can’t praise it enough. I see my palliative pain coordinator Barbara who has really helped with my pain control and has become a friend. I’ve had the opportunity to try complementary therapies including reflexology. It’s great if you’re strapped for cash because you can get them for free. I’ve also benefited from counselling within the hospice.
'It’s very flexible so you can adjust sessions depending on how you’re feeling that day and how frequently you’d like to have sessions.
‘If I have any worries or I’m in pain it’s so easy to phone up my palliative care team and they can fit me in on the day or advise on the telephone. I can phone up my breast care nurse and hospital team but unless they can see me there’s not much they can do.
‘All I can say is don’t be a martyr: if you’re in pain don’t just keep suffering. Palliative care can help alleviate this and it’s the best place to go for one-to-one care.’
Breast Cancer Care's Living with Secondary Breast Cancer meet-ups are designed to give you the opportunity to meet other people living with a secondary diagnosis and get relevant information and support.
Content last reviewed March 2015; next planned review 2017