Supported Self-Management Follow Up for Breast Cancer and Ductal Carcinoma In-Situ (DCIS)

Patient Leaflets Team

  • Reference Number: HEY-1274/2022
  • Departments: Breast Care, Oncology (Cancer Services)
  • Last Updated: 1 May 2022

What is supported self management?

Supported Self-Management (SSM) is a new approach to follow-up care after your treatment for breast cancer or DCIS has finished. Previously our follow up was known as Survivorship or Nurse – Led Follow Up.

This follow up replaces routine clinical appointments, which means that you do not have to come to hospital when you are feeling well and are not experiencing any symptoms, but encourages you to be in control of your follow up by empowering you to know what to look out for in the future.

The Department of Health and Social Care and Macmillan Cancer Support encourage supported self-management follow-up for people with breast cancer. It is now being used at many hospitals across the UK, although it may be referred to differently in other places.

Supporting self-management is about helping you to help yourself through taking action to maximise your recovery and helping you to sustain that recovery. It aims to give you the confidence and capability to move on from your diagnosis and treatment and live your life.

However this does not mean you are on your own because you can contact the Macmillan Breast Care Nursing Team via the telephone triage. They aim to answer questions or deal with any concerns if or when they arrive, co-ordinating and communicating timely access to the most appropriate support service or health professional if or when you need it.

What are the benefits of Supported Self- Management?

The main advantage is that you will not have to attend routine follow-up appointments in the breast clinic. Many patients have told us that these appointments are often a source of anxiety and they find them unnecessary when they are feeling well.

Are there any risks?

Some people worry that not having regular follow-up appointments at the hospital may cause their cancer to go unnoticed if it comes back.

However, there is no evidence that routine follow-up appointments increase the chance of picking up recurrence of cancer, and patients tend to identify most recurrences themselves in between appointments.

If there are any symptoms you are worried about, or if you have any concerns you would like to discuss, contact your Breast Care Nurse Team on (01482) 622013.

How will it work for me?

Around 4-8 weeks after completion of your treatment you will have a co-ordinated telephone consultation with a Macmillan Breast Care Nurse Specialist (MBCNS).

The purpose of this consultation will be to do a Holistic Assessment of your needs (HNA) and provide you with information about signs and symptoms to look out for and to report.

You will be provided with an ‘End of Treatment Summary’ which will include information on:

  • Your diagnosis
  • Treatment in summary and the possible side effects, both current and late
  • Arrangements for annual mammograms, if appropriate
  • Having bisphosphonate infusions and bone density scans, if appropriate
  • Signpost to supporting agencies and events to improve your Health and Wellbeing.

Overall, the purpose of the consultation is to help you to get back to your day to day activities and improve your quality of life after cancer.

During this appointment the MBCNS will also assess the suitability for the supported self-management pathway for you individually and explain:

  • How you can contact the team
  • The process to follow if you need to come back to the breast clinic at any time in the future. Patients who need to come back to the clinic are usually offered an appointment, or an appropriate diagnostic test, within two weeks of their call.

Will I continue to have mammograms?

Yes – All patients who have had Breast Cancer or DCIS will have regular follow up mammograms (unless you have had bilateral mastectomies).

Annual mammograms of both breasts after a wide local excision (lumpectomy).  

Annual mammograms of the opposite breast after a mastectomy

  • If you are under 50 you will continue to have annual mammograms at the Breast Unit until you are 50 (at age 50 you will then be entered into the National Breast Screening Programme)
  • If you are over 50 you will have annual mammograms for 5 years at the Breast Unit (After 5 years you will be entered into the National Breast Screening Programme, where you will be invited for a mammogram every 3 years)
  • If, after 5 years of annual mammograms, you are over 70, you will not be routinely invited for a mammogram but can request one every 3 years by contacting your GP or nearest Breast Screening Unit.

How will I receive the results of my mammogram?

You and your GP will receive a letter with your mammogram results within 2-3 weeks.

If you are not offered a yearly mammogram, or if you don’t receive your results within a month of having a mammogram, please contact us.

Are there any other regular tests that I may need to have?

Following your treatment, we will advise you and your GP if you need any additional regular checks, such as bone density scans (DEXA scans).

These scans can tell us if you are developing bone thinning which could lead to a condition called osteoporosis.

They will be arranged via your GP who will receive clear instructions on what you need.

What should I report?

Any symptoms that are: new or unusual for you with no obvious cause and do not go away.

Including the following issues:

  • New changes to your breast, chest wall region, neck or under your arm
  • A change in size or shape to your breast
  • A new lump or thickening that feels different from the rest of the breast tissue
  • A change in skin texture such as puckering or dimpling (resembling orange peel)
  • Redness or a rash on the skin and/or around the nipple (which may look like eczema)
  • Your nipple becoming inverted (pulled in) or changing its position or shape
  • Discharge (liquid) from one of both or your nipples
  • swelling in your armpit or around your collarbone and breast bone
  • Constant pain in your breast or armpit

And any new medical symptoms that you are worried could represent a spread of breast cancer. These include:

  • Feeling sick most of the time
  • Severe or ongoing headaches
  • Dry cough
  • Feeling of breathlessness
  • Loss of balance or weakness or numbness of your limbs
  • Loss of control of bladder or bowel
  • Feeling much more tired than usual
  • Altered vision or speech
  • Unexpected weight loss and loss of appetite
  • Pain in your bones such as back, hips, ribs that does not get better or improve with pain relief and may be worse at night
  • Abdominal pain, swelling or jaundice (yellow colouring of the skin)

Remember there are many causes for these symptoms and they are not necessarily associated with breast cancer.

The Macmillan Breast Care Nurse Specialist Team

We are your guides and advocates from diagnosis, throughout your treatment and follow up.

We are a consistent point of contact for advice, support and information and offer:

  • Emotional and psychological support for you, and your family
  • Holistic Needs Assessments (HNA) which can help you highlight any practical, social, emotional, financial or spiritual concerns you are worried about
  • An individual care plan to meet your support needs
  • Recommend health and well-being agencies and events to help support and inform you following on from a diagnosis
  • Referrals or signposting to other services and community groups
  • Links with other health care professionals involved in your care
  • Co-ordination of follow up and surveillance

 

You should also contact the MBCNS Team with any concerns about:

  • Your ongoing Hormonal Therapy and potential menopausal symptoms (if appropriate)
  • Possible side effects from your chemotherapy and/or radiotherapy treatment if not on current treatment. (If you are having these treatments please call the numbers given by the team providing the treatment).
  • Problems related to your original breast surgery or questions about breast reconstruction
  • If you would like to access any additional holistic support and/or information on living a healthy lifestyle
Should you require further advice on the issues contained in this leaflet, please do not hesitate to telephone us on (01482) 622013

Information about you

As part of your care, when you come to the hospital, information about you is shared between members of a healthcare team, some of whom you may not meet.  It may be used to help train any staff involved in your care.  Information we collect may also be used after you have been treated to help us to maintain and improve the quality of our care, to plan services, or to research into new developments.

 

We may pass on information to other health organisations to help improve the quality of care provided by the NHS generally.

 

All information is treated as strictly confidential, and is not given to anyone who does not need it.  If you have any concerns please ask your doctor, or the person caring for you.

 

Under the General Data Protection Regulation and the Data Protection Act (2018), Hull and East Yorkshire Hospital Trust is responsible for maintaining the confidentiality of any information we hold on you.

 

 

This leaflet was produced by the Breast Service, Hull University Teaching Hospital NHS Trust and will be reviewed in May 2025.

 

 

References

Department of Health and Social Care (2013). Living With and Beyond Cancer: Taking Action to Improve Outcomes.

Independent Cancer Taskforce (2015). Achieving world-class cancer outcomes: a Strategy for England 2015-2020

National Institute for Health and Care Excellence (2011) Improving Outcomes in Breast Cancer, Manual update.

National Institute for Health and Care Excellence (2018). Early and locally advanced breast care: diagnosis and management

NHS England (2016). Achieving World-Class Cancer Outcomes: Taking the strategy forward NHS improvement Cancer (2012). Innovation to Implementation: stratified pathways of care for people living with or beyond cancer. A “how to guide”.

 

 

 

 

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

  • you must be able to give your consent
  • you must be given enough information to enable you to make a decision
  • you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.

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