Supporting patients through their breast cancer journey – key points for nurses in primary care

The Patient Journey: In the first of a new series exploring what happens after patients are referred on from primary care, Louise Grimsdell, senior clinical nurse specialist at Breast Cancer Now, outlines the process of investigation, diagnosis and treatment for breast cancer, and how nurses in primary care can support patients to navigate this journey

Breast cancer is the most common cancer in women in the UK, with over 55,000 women and around 400 men diagnosed each year. While the majority of patients referred to a breast clinic will not be diagnosed with breast cancer, early detection remains crucial in improving outcomes and survival rates.

This article outlines what happens when a patient is referred for suspected breast cancer, from their initial breast clinic appointment and the diagnostic process through to the different treatment options and long-term follow up care.

Nurses play a vital role throughout the process, and this includes nurses in general practice and the community, who can advise patients on what to expect on referral, managing the emotional impact of diagnosis and treatment and signposting them to appropriate specialist support at each stage.

How patients are referred to a breast clinic

Patients are referred to a breast clinic through an urgent suspected cancer referral pathway by their GP, or being recalled following routine NHS breast screening.

Urgent suspected cancer referrals

Symptoms that may prompt a referral to a breast clinic for further assessment include:

A lump or swelling in the breast, upper chest or armpit
A change to the skin, such as puckering or dimpling
A change to the colour of the breast – the breast may look darker, red or inflamed
A nipple change, for example inversion
Rash or crusting around the nipple
Unusual nipple discharge
Changes to the shape or size of the breast

On its own pain in the breasts is not usually a sign of breast cancer.

A referral to a breast clinic does not mean someone has cancer. They could have normal breast changes or a benign breast condition, which are both much more common than breast cancer. GPs follow national guidance (NICE – England) to refer people if they have symptoms.

When should a person be referred with suspected breast cancer?

People should be referred using a suspected cancer pathway referral for breast cancer if they are:

Aged 30 years and over and have an unexplained breast lump with or without pain, or
Aged 50 years and over with any of the following symptoms in one nipple only:
- Discharge.
- Retraction.
- Other changes of concern.

A suspected cancer pathway referral should be considered for breast cancer in people:

Related Article: Recognising the signs of secondary breast cancer

With skin changes that suggest breast cancer, or
Aged 30 years and over with an unexplained lump in the axilla.

A non-urgent referral should be considered in people aged under 30 years with an unexplained breast lump with or without pain.

NICE guidance outlines how quickly someone should be seen, depending on their symptoms and age.

National guidance on referral criteria may vary slightly between England, Wales, Scotland and Northern Ireland. In England the Faster Diagnosis Standard (FDS) aims to ensure patients referred with suspected cancer receive a diagnosis or have cancer ruled out within 28 days of being referred urgently by their GP. Many breast clinics use one-stop models to meet this target, aiming to provide assessment, imaging, and biopsy within a single visit.

Recall following routine breast screening

In the UK, women aged 50 or over are invited for a mammogram every 3 years until their 71st birthday. This is part of the national breast screening programme.

Around 4 in 100 women are recalled after a screening mammogram. Most women are recalled because a change has shown up on the mammogram and more information is needed before a result can be given.

If someone is diagnosed with breast cancer through the NHS breast screening service, they will be seen in a breast clinic to be given their diagnosis and discuss their treatment plan.

What happens at a breast clinic referral appointment

When somebody attends a breast clinic appointment after referral, they will usually be seen by a consultant breast surgeon or a specialist nurse. They will be asked about their symptoms, family history of breast problems, any medications such as hormone replacement therapy (HRT) or contraceptive pill, previous breast surgery and pre-existing medical conditions. This will then be followed by a breast examination.

In addition to breast examination most people will have further tests; this is likely to include breast imaging and a biopsy. Breast imaging may include a mammogram or ultrasound scan.

Mammograms are not often used in women under 40. Younger women’s breast tissue can be dense, which can make the X-ray image less clear and any changes harder to identify. However, for some women under 40, mammograms may still be needed to complete the assessment.

Other types of breast imaging

Although mammograms are usually the best way of detecting any early changes within the breast, sometimes other imaging techniques are used as well.

MRI scan: uses magnetism and radio waves to produce a series of images of the inside of the breast.
Contrast enhanced spectral mammography (CESM): uses a special dye to ‘highlight’ areas within the breast in more detail than a standard mammogram.

Depending on test results and symptoms, other types of scans may also be recommended.

Biopsy

A biopsy involves removing a small sample of breast cells, breast tissue and sometimes lymph node tissue from the armpit. This will usually be done using a core biopsy, but sometimes a fine needle aspiration (FNA). The sample is sent to the laboratory where it’s looked at under a microscope.

Having a breast examination, breast imaging and a biopsy is known as a triple assessment.

Not all tests are completed in a single visit. Additional imaging (such as MRI) or repeat biopsy may be arranged if results are inconclusive.

The breast clinic will let the patient know how when and how they receive their results.

When somebody is diagnosed with breast cancer

When a person is diagnosed with breast cancer, they will be reviewed in a multidisciplinary team (MDT) meeting to determine their treatment plan. The MDT usually includes breast surgeons, radiologists, pathologists, oncologists, clinical nurse specialists (CNSs), and can also include plastic surgeons and genetic specialists.

The features of somebody’s breast cancer will help determine what treatment they will be offered. This includes the type of breast cancer they have, the grade, stage and receptor status.

There are several different types of breast cancer, which can be diagnosed at different stages and can grow at different rates. Breast cancer can be invasive or non-invasive. Invasive breast cancer has the potential to spread to other areas of the body. Most invasive breast cancers are of no special type (NST) and are estrogen receptor (ER)-positive (hormone-positive). Other types of breast cancer include human epidermal growth factor receptor (HER)2-positive and triple negative (TNBC; lacking estrogen, progestogen HER-2 receptors). Other factors such as physical health and pre-existing medical conditions will also be considered.

Treatment for primary breast cancer

Treatment for primary breast cancer aims to remove the cancer and reduce the risk of it coming back or spreading to other parts of the body. Therefore, surgery to the breast and usually the lymph nodes will always be part of somebody’s treatment plan.

Other treatments may include the following but not necessarily in the order below:

Chemotherapy: Chemotherapy is a treatment that destroys cancer cells using anti-cancer drugs. It works by affecting their ability to divide and grow. Chemotherapy can be given before surgery (termed neoadjuvant chemotherapy) which may be to slow the growth of fast-growing breast cancer, or to shrink a larger breast cancer before surgery. A patient may alternatively have adjuvant chemotherapy after surgery for primary breast cancer to reduce the risk of the cancer returning or spreading. Chemotherapy is usually given as a series of treatments with a break between each treatment. This allows the body time to recover from any short-term side effects. The treatment and period of time before the next one starts is called a cycle. Chemotherapy for primary breast cancer usually lasts between 4 to 6 months.
Radiotherapy: Radiotherapy uses high energy X-rays to destroy cancer cells. It is given to the breast, chest wall or axilla after surgery for primary breast cancer to reduce the risk of recurrence. Radiotherapy can be given in several ways and at different doses. The total dose of radiotherapy is split into a course of smaller treatments. These are called fractions. Radiotherapy is usually given daily for 1 to 3 weeks.
Hormone (endocrine) therapy: Hormone therapies which include drugs such as tamoxifen, letrozole or anastrozole, block or stop the effect of the hormones oestrogen and progesterone on breast cancer cells. Different hormone therapy drugs do this in different ways. Although hormone therapy is more commonly given after surgery to reduce risk of recurrence, some women who have been through the menopause are prescribed it before they have an operation. This may be to reduce the size of the cancer or if surgery is delayed. Hormone therapy is usually prescribed daily for 5 years but can be offered for up to 10 years to reduce the chances of breast cancer recurrence.
Targeted therapy: Targeted therapy is the name given to a group of drugs that block the growth and spread of cancer. They target and interfere with processes in the cells that help cancer grow. The type of targeted therapy somebody is offered will depend on the features of their breast cancer. The most commonly used targeted therapy for breast cancer is trastuzumab (Herceptin). Other targeted therapies used in breast cancer include Phesgo (containing pertuzumab and trastuzumab), abemaciclib and ribociclib.
Bisphosphonates: For primary breast cancer, bisphosphonates such as zoledronic acid may be used to reduce the risk of breast cancer spreading to the bones and other parts of the body. Treatment is usually started within 3 months of surgery or within 2 months of completing chemotherapy. It is given as an infusion every 6 months for 2 to 3 years.

De novo metastatic breast cancer

Secondary breast cancer usually occurs years or sometimes months after a diagnosis of primary breast cancer, but sometimes people are diagnosed at the same time before a primary breast cancer has been discovered. This is referred to as de novo metastatic breast cancer. De novo metastatic breast cancer is sometimes referred to as being ‘treatment naïve’. This may mean that the cancer may be more responsive to treatment. The treatment offered will depend on the type and individual features of the cancer.

The breast clinical nurse specialist role

A breast clinical nurse specialist (CNS) will be at the consultation when a patient is given their diagnosis of breast cancer and will act as a keyworker to that patient throughout their breast cancer treatment. The roles undertaken by a breast CNS can vary; they may be based across the whole treatment pathway, or within the surgical team or oncology team. Key aspects of their role include:

Providing emotional support.
Supporting with complex decision making.
Providing information and support on different treatments and their side effects.
Providing direct clinical care such as wound management and administration of chemotherapy.
Nurse prescribing.
Nurse-led clinics.

Life after breast cancer treatment

Many people are surprised at how emotional they feel when their hospital-based treatment ends.

For many people, it’s not always ‘back to normal’ when they finish treatment for primary breast cancer. For some, it can mean leaving behind the routine and support they’ve become used to. Adapting to life after treatment can be difficult and often the need for information and support continues. Coping with the shock of a diagnosis, treatment and side effects, and worries about recurrence can make it difficult to readjust to everyday life again.

How someone is followed up after treatment depends on their individual needs, such as how likely they are to have side effects from treatment and the risk of the cancer coming back. It also depends on the arrangements at the hospital where they’ve been treated.

Some patients move to patient-initiated follow-up (PIFU), where they do not have scheduled appointments but can contact their treatment team if they have new symptoms or are struggling with side effects of treatment.

Patients will usually be offered annual mammograms after breast cancer for up to 5 years after, but this will depend on the surgery they have had and their age.

Patients won’t usually have other routine scans and tests, unless they report any symptoms that need checking. Several large studies have shown having regular scans when there are no symptoms is not useful in finding recurrence and doesn’t improve overall survival. Some people may be offered bone density scans. This is because some treatments for breast cancer, such as hormone therapy and chemotherapy, can affect the bones and increase the risk of developing osteoporosis.

All patients should be offered an end of treatment review, usually from the breast CNS. Patients may be asked to complete a holistic needs assessment (HNA); this helps them to think about their needs and concerns across all areas of their life and find support and possible solutions. They will also receive a treatment summary.

The treatment summary includes information about:

Side effects, including those that occur during treatment and after treatment (known as late side effects).
Signs and symptoms of a possible recurrence or spread of the cancer.
Symptoms that should be referred to the treatment team.
Any action the GP needs to take such as medication reviews and managing any ongoing side effects. Nurses are key to delivering this support and helping patients adjust to life after breast cancer.

Supporting patients through the whole journey

Across the entire breast cancer pathway, from referral, diagnosis and treatment, through to adjusting to life once treatment is complete, nurses play a vital role. By understanding the complexities of diagnosis, treatment and follow-up, nurses strive to inform, support, empower and advocate for patients affected by breast cancer.

For more information and resources, visit https://breastcancernow.org/healthcare-professionals-hub.

Publications for patients: https://breastcancernow.org/download-and-order-publications

Services and support: https://breastcancernow.org/support-for-you

Louise Grimsdell is senior clinical nurse specialist at Breast Cancer Now