Standards of care for older adults with breast cancer

Being diagnosed with breast cancer as an older adult can bring its own set of challenges and, while every person’s situation will be different, we feel it’s important for older adults to know what assessment and care they should expect while living with and beyond breast cancer.

It’s currently estimated that by 2040 there will be over 1 million older people living with breast cancer in the UK.

80% of breast cancer cases are in women over 50, and around 24% in those over 75. For men, 75% of breast cancer cases are in those over 60 years old.

For these standards, we have defined older adults as those over 70. This reflects trials such as ‘Bridging the Age Gap’ and the National Audit of Breast Cancer in Older Patients (NABCOP). However, there is great variety in the health, wellbeing and needs of those over 70 and we hope to reflect the importance of assessing and treating everyone individually, not based on their age alone.

Some people under the age of 70 may also find that these standards reflect their situation and needs.

Research has shown that older people with breast cancer often have specific needs. The following are common concerns but there may be others:

• Living with a number of different health conditions
• Being less physically active or less mobile or unable to easily attend appointments
• Being on several different medications (polypharmacy)
• Less social support, living with anxiety and depression and feeling alone
• Potential memory and thinking problems (cognitive impairment)
• Higher levels of nutrition problems and risk of treatment-related side effects

They are also at risk of:

• Assumptions about fitness for treatment, treatment options or treatment preferences based on age alone
• Being either over or under treated
• Being less involved in decision making and offered less support

The standards of care below have been created with input from specialists with an interest in older people with cancer (geriatric oncology), breast cancer specialists and older people with a lived experience of breast cancer. They are designed to give older adults with breast cancer, and their support networks, the information and tools to ask questions so they can: 

• Make informed choices about care
• Access the right support for them

These standards have been created to help you and those closest to you understand what care and support you should be able to expect during and after your treatment for breast cancer.

Even though care may vary by location, these are the standards you should expect as an older person with breast cancer.

You deserve to:

• Be treated with respect
• Be kept informed
• Be supported in making choices that work for you

A healthcare professional who is there for you

This should be a clinical nurse specialist or key worker. They should be skilled and knowledgeable in the care of people with breast cancer. 

You should also: 

• Have access to specialists in the care of older people with cancer, where available, such as: nurses, physiotherapists, pharmacists, occupational therapists, dietitians, oncologists (cancer doctors) and geriatricians (doctors specialising in treating older people)
• Be given clear communication about how to contact your treatment team and the preferred method of contact. Any communication needs should be clearly documented
• Be able to involve an advocate, if you want or need one. This can be a family member, friend or a healthcare professional such as your breast care nurse

Care based on you, not your age

You should have access to specialist assessment for older people that looks at:

• What matters most to you
• Your health (both physical and mental health)
• Any other medical diagnoses
• Medications you are taking for other conditions
• Your physical, nutritional, emotional and social needs
• Your culture and any religious beliefs

Information and communication

You should: 

• Be given enough information, support and time to make informed decisions about your treatment and care
• Be provided with the right amount of information for you in a format that you prefer, including a clear treatment plan
• Be supported to ask questions, manage symptoms or side effects and take as much control over your care as you wish
• Be told clearly about the risks and benefits of different treatment options and the impact on your quality of life, including your outlook (prognosis)
• Be told how to access breast screening over 70 once annual follow-up finishes

You should also have regular communication with other healthcare professionals, such as your GP and specialist teams, to make sure your care is joined up, especially if you have other health conditions.

If your team think you have issues with memory or thinking, this should be discussed with you first and assessed.

Access to all treatment options

All possible tests and treatments (including genetic testing, if appropriate) should be discussed with you, including the risks or benefits, to help with decision making based on what matters to you.

You should: 

• Be as involved in the decision-making process as you want to be, and be able to include those closest to you, if appropriate
• Be offered care and treatment based on overall health, not age alone
• Be referred to specialist support where appropriate, such as: palliative care, physiotherapy, occupational therapy, nutrition, care of older adults and counselling services
• Be given help to plan for the future if you have a life-limiting diagnosis, including any cultural, spiritual or religious decisions you wish to make

If you have metastatic (secondary) breast cancer, your treatment and care should follow guidelines for treating metastatic breast cancer and guidelines for treating cancer in older people. It should not be based on your age alone.

Taking part in research

You should be

• Given the chance to join any appropriate clinical trial or research study
• Given clear and understandable information about potential trials or studies in the right format for you

If a trial or research study is suitable, practical issues such as transport or access arrangements should not stop you taking part and you should be offered help with these.

Support

As social isolation, loneliness and depression are common for older adults, your needs should be regularly assessed and you should be signposted to appropriate help.

You should also: 

• Be provided with information about support options, both general and specific to your needs. This could be about your physical health, nutrition, mental health, social concerns or financial help
• Be signposted to cancer support organisations such as Breast Cancer Now, Macmillan Cancer Support or Maggie’s
• Be signposted to a variety of other support options, such as local support networks and social services as well as support charities such as Age UK, Turn2Us, Citizens Advice or Silverline
• Be offered opportunities to talk to other people like you for support

Your family and friends should also have access to information and support. This might include carer support, family counselling or how to access respite care. These may be provided by local or regional cancer support organisations.