Fear of recurrence

You may feel like your safety net has been removed when your active treatment for breast cancer ends and follow-up appointments become less frequent or stop all together. On the other hand, you may feel more comfortable to be back in the care of your GP, rather than continuing with hospital visits. Increasingly, hospitals are transferring care back to GPs earlier, and for people who are not at high risk of recurrence, this has proven a satisfactory model of care.

However, fear of cancer recurrence is a normal part of your cancer experience. Your fears might increase when you go for a routine mammogram or clinic visit. Anniversaries of diagnosis or surgery can be difficult, and hearing other people’s stories can also be traumatic. It might help you to think about what makes you anxious and how you can manage this. You could take a friend to your appointments and arrange to do something enjoyable after.

A local recurrence is often found as a lump or detected on a mammogram. Find out more about the signs and symptoms of distant recurrence (advanced breast cancer) here.

Many breast clinics use a survivorship care plan to give you an overview of your past treatment and a plan for future surveillance. This provides you with the confidence to transition to community care, knowing you can be quickly referred back for specialist assessment if needed.

Ask your breast care nurse or specialist to prepare an appropriate care plan for you. Ensure this includes information about your medical support team and how to access a specialist review if needed.

Although five years is assumed to mean that you have the “all clear”, almost half of all breast cancer recurrences happen after the five-year mark. Oncologists don’t generally speak in terms of cure, as there is no way of being 100% certain about an individual’s long-term outcome.

Regular breast screening and better treatments have contributed to significantly better survival for breast cancer patients. Different types of breast cancer have different levels of recurrence risk. When determining your risk, the tumour size, grade, hormone status and lymph node involvement are all considered. Your specialist will be able to discuss your individual risk of recurrence in detail.

Risk of recurrence might cause you to feel overwhelmed and anxious. It’s important to remind yourself that you have taken the best recommended treatments and therefore have done everything you can to reduce your risk of cancer coming back in the future. It’s sensible to still remain vigilant and see your GP if you have any concerning symptoms that are not going away; however, these days many people are cured by their initial treatment and most people have good long-term survival after breast cancer.

There is no test currently available to accurately determine whether your cancer will come back. Regular scans can cause huge anxiety while bringing little benefit after early breast cancer.

Tumour markers, measured in blood tests, such as CA15-3, can be affected by things other than cancer so they are not reliable in this setting (they are more accurately used to monitor response to treatment in the metastatic setting).

It’s important to take some responsibility for your own wellbeing. By making positive changes, you can restore a sense of control over your life and improve your physical and emotional health.

• Maintain a healthy lifestyle with regular exercise, good nutrition and stress reduction. Regular exercise plays an important part in survival rates post-treatment.
• 10% weight gain during or after treatment has been shown to negatively impact on survival but the evidence surrounding this is not strong. In women who were already overweight at diagnosis, it’s unclear whether subsequent weight loss impacts survival but it still has many overall health benefits.
• Take treatments as prescribed and complete the recommended duration of treatment. Stopping treatment early reduces its effectiveness so tell your doctor about any troublesome side effects as they may be able to be managed, allowing you to complete the treatment.
• Alcohol has been firmly established as a risk factor for developing breast cancer. There is no safe level of consumption, so it's wise to take steps to reduce how much you drink.
• Try to move on with your life and do things that you enjoy. Where possible, reduce the negative aspects of your life.
• To reduce anxiety give complementary therapies a go. Massage, meditation, music or art therapy can help reduce anxiety.
• Social interaction and support is an important part of cancer recovery. Sometimes friends and family don’t understand that you might still have concerns after your treatment ends. It helps to have someone who will listen to you but also help distract you from your fears.
• Try not to label yourself forever as a cancer patient. Instead, think of yourself as someone who has been treated for, and recovered from, breast cancer. This will help you to get back on track.
• If you are struggling with anxiety you can visit a counsellor or psychologist. Cognitive behavioural therapy (CBT) can also help you to recognise and change negative thought patterns. We fund free counselling sessions.

Fear of cancer recurrence may not completely disappear but as time goes you gradually make the transition from illness to wellness.