1. What is follow-up?
Once hospital treatment for breast cancer ends, you’ll continue to be monitored. This is known as follow-up.
People are followed up in different ways. How you’re followed up after treatment will depend on:
- How likely you are to have side effects from treatment
- The risk of your cancer coming back
- Arrangements at the hospital where you’ve been treated
2. How will I be followed up?
You’ll usually be offered regular mammograms, depending on the type of surgery you’ve had.
You may or may not also have regular appointments.
Follow-up without regular appointments (sometimes called open access or patient-initiated follow-up)
You may not be offered any regular follow-up clinic appointments after treatment ends.
Instead, before being discharged from the breast clinic, you should be given information to help you manage your health after treatment.
After this you can contact your treatment team or see your GP if you have concerns or symptoms that need to be checked by a doctor or nurse.
If you’re offered this sort of follow-up plan, you should be given details of:
- Who to contact
- How best to do this
- The types of concerns or symptoms to report
If you’re not offered this information, ask your treatment team about this.
Follow-up with regular clinic appointments
You may be offered planned appointments with members of your treatment team. How often this happens varies.
You may be followed up at the hospital and have regular appointments with your surgeon, oncologist (doctor who specialises in cancer) or a nurse practitioner.
Sometimes follow-up appointments take place on the phone or online. You’ll only visit the breast clinic for a routine mammogram or if there’s a concern or symptom that you or your doctor feels should be checked.
What happens at follow-up appointments?
Follow-up appointments usually focus on how you’re feeling. You can explain any problems, symptoms or treatment side effects you’re having.
This is also your opportunity to ask questions. Writing your questions down beforehand can help you get the most out of the appointment.
If you attend in person, you may have a physical examination that includes your breast or chest area as well as any other area of concern.
If you have any concerns, you may be referred to another healthcare professional, for example a physiotherapist if you’re having problems with arm movement.
Follow-up after clinical trials
If you’ve taken part in a clinical trial during your treatment, your follow-up will depend on which trial you have been part of.
Your research nurse will give you information on how you’ll be followed up.
3. Mammograms after breast cancer
After your treatment, you’ll be invited to have regular mammograms.
If you had , you’ll have a mammogram on both breasts.
If you had a mastectomy (with or without reconstruction), you’ll have a mammogram on your other breast.
If you had a double (bilateral) mastectomy, you will not be offered mammograms.
You might be offered other forms of follow-up depending on your individual situation.
How often will I have mammograms?
Most hospitals follow the recommendations below from the National Institute for Health and Care Excellence (NICE).
If you’re under 50
You’ll have a follow-up mammogram every year for at least 5 years. However, you may have these for longer depending on your age. At around the age of 50, you’ll be invited to take part in a national breast screening programme (see below).
If you’re aged 50 to 70
If you were already eligible for breast screening when diagnosed, you’ll have a yearly mammogram for 5 years.
If you’re still having follow-up annual mammograms, you do not need to go for a routine screening appointment. If your screening invite includes a specific appointment date and time, you can contact your local breast screening service to let them know you do not need your appointment slot.
After your follow-up mammograms have ended, you’ll be offered routine screening as part of a national breast screening programme.
If you’re over 70
You’ll have yearly mammograms for 5 years.
After this you can request a mammogram every 3 years as part of a national screening programme. You will need to arrange this yourself by contacting the screening unit in your area.
If you have a family history or altered gene
If you remain at high risk because of a family history of breast cancer, or you have an altered BRCA gene, you’ll be offered regular tests for a longer period.
4. Will I have other tests and scans?
You won’t usually have other routine scans and tests unless you 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 scans to check their bone strength. 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 (thinning of the bones).
5. The Recovery Package
The Recovery Package is a package of ongoing care and support at the end of treatment. It’s made up of 4 main parts to help you feel more in control and improve your quality of life.
You may hear your treatment team talk about parts of the package separately.
The Recovery Package might not be offered in all areas, or it may be called something else.
If you’re not offered any parts of the Recovery Package, you can ask your treatment team for more information.
Holistic needs assessment and care planning
A holistic needs assessment (HNA) helps you think about your needs and concerns across all areas of your life and find support and possible solutions. It will consider your physical, social, psychological and spiritual needs.
You may be offered an HNA at various times throughout your diagnosis and treatment and at the end of treatment. After each assessment you should be given a copy of a written care or action plan.
Treatment summary
This is a summary produced by your hospital team at the end of treatment and sent to your GP.
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 or spread of the cancer
- Symptoms that should be referred to your treatment team
- Any action the GP needs to take
You may also receive a copy of the treatment summary.
A Cancer Care Review
This is a meeting with your GP or practice nurse within 12 months of having treatment. The purpose is to review any concerns you have and to help you understand what information and support is available in your local area.
If you haven’t been offered a review and would like one, contact your GP.
A health and wellbeing support event
This could include an appointment at a health and wellbeing clinic, which provides advice on healthy living and physical activity, or an invitation to a group event or workshop.
Our Moving Forward courses offer you information and support on adjusting to life after treatment.
6. Further support
For some people, the last hospital-based treatment is the goal they focus on, and getting there can feel like a real achievement. But others also feel isolated, low or anxious when their regular hospital appointments stop.
At one of our Moving Forward courses you can meet others who have finished treatment and get tips from professionals.
If you want to talk things through, you can call our helpline free on 0808 800 6000. Or speak to people who understand what you’re going through by joining a Moving Forward thread on our forum or speak to one of our Someone Like Me volunteers.
