What is Supported Self-Management?

Supported Self-Management follow-up programme (known as SSM) has been specially designed by the breast unit to support you when you have completed your treatment. It is a type of follow up, where you the patient, are in control. It means that your normal routine will not be disrupted by regular hospital appointments; instead you can quickly gain access to the breast care team when you need to. It is based on research-based evidence showing that there is no advantage to regular, fixed, follow up appointments in hospital for women who have completed treatment for breast cancer and are well.

The Breast Supported Self-Management team

We are an established team with specialist knowledge and skills in breast cancer care comprising of two Clinical Nurses Specialist Jessica Maranzano and Chris Turner and our SSM breast cancer support worker Carli Baverstock.

The Supported Self-Management team are here to help support you should you have any concerns, questions, need advice or require emotional and psychological support once you complete your cancer treatment.

No concern is too big or small and the support we offer is ongoing – it doesn’t stop when your treatment finishes.

Team photo.jpg

How to contact the Supported Self-Management team for Breast

The Supported Self-Management team can be contacted on Tel: 01737-231992

Mon - Fri 09:00 - 17:00

You may find when your call the number that the message on the phone says you have reached the appointment booking line. Please stay on the line and your call will be picked up by the support workers

What happens at a Supported Self-Management appointment.

Once you have completed your treatment your consultant will refer you to the Supported Self-Management team. The Support worker will send you out an introduction letter. You will receive an appointment with the Clinical Nurse Specialist for SSM within 3-4 months. Until you have your first appointment with SSM please contact your Macmillan Breast CNS if you have any questions or concerns in the meantime.

We can offer you a choice of appointments type, phone call, face to face at Crawley hospital or video call.

We will send you out our Supported Self-management booklet and a Holistic needs assessment (concern checklist) which helps identify any breast related concerns you may have.

Please note the holistic needs assessment is used for people who have had a wide range of cancer diagnoses and you may find a number of concerns are not applicable to your experience.

During your appointment you will have the opportunity to discuss the following with your nurse specialist

  • Your diagnosis and treatment (what type of cancer you had and the treatment you have completed)
  • Your holistic needs assessment (concerns checklist) with any breast related concerns specific to you and tailored information and support based on your needs.
  • Future surveillance mammograms (if applicable). Breast examination How to do a breast examination - BBC News
  • Signs and Symptoms to report to us and who to contact
  • Information on endocrine therapy and bone density scans (if applicable)
  • Getting further help and support
  • How to contact your nurse specialist/support worker if you have any concerns
  • Your personalised treatment plan: After your appointment you will be sent your personalised treatment summary. A copy is also sent to your GP.

The personalised treatment plan will summarise what treatment you have had and the follow up care you will receive.

Being breast aware is an important part of caring for your body. It means getting to know how your breast/breasts/chest look and feel, so you know what is normal for you. You can then feel more confident about noticing and reporting any changes.

We know that after having treatment for breast cancer it can take some time (up to two years) to become familiar with your treated breast. However, the better we know our bodies, the quicker we notice what is normal or not normal for us. If something feels or looks abnormal for you, please contact the supported self-management clinical nurse specialist.

 

We encourage you to continue to be breast aware and report any of these symptoms to your SSM team:

 

  • New breast lumps, breast thickening, axillary/armpit region lumps, blood-stained nipple discharge, new nipple inversion, lumps above the collar bone

 

  • If you have had a mastectomy, or had breast reconstruction surgery please be aware of any new changes around the post-surgical site, lumps in the axillary/armpit region or above the collar bone

 

The Royal Marsden with Victoria Derbyshire has produced a 2.30-minute video which is helpful in making people feel confidence in performing Breast Examination. How to do a breast examination - BBC News

 

This leaflet explains in more depth, the changes in the breast which we would like you to report to us.

 

If you notice any changes within the breast, chest or armpit area or have any concerns please contact the SSM team on 01737 231 992.

People who have previously had a diagnosis of breast cancer have a small increased risk of developing a further breast cancer in the same breast (known as recurrence) or the opposite breast (contralateral breast cancer).

This is why we encourage you to be breast aware and check your breasts on a monthly basis.

At your appointment, we will discuss what surveillance imaging you need. For most women this will be a mammogram. In a small number of cases this may be different but this will be discussed with you during your appointment.

Your annual surveillance mammograms will take place in either East Surrey Hospital or Crawley Hospital.

Usually, the surveillance imaging is once a year for five years, or until you reach the age of 50 (whichever happens later).

The results will be sent to you by post and we aim to do this within 4 weeks. If it has been 4 weeks and you haven’t heard from us then please do call the SSM team on 01737 231 992.

What happens after my surveillance is completed?

Once your surveillance mammograms are completed, you will have an SSM discharge appointment. During this appointment we will explain how to access future surveillance mammograms through your local NHS breast screening services.

Everyone has aches and pains, however, when you have had breast cancer you may be more aware of them and may be concerned that symptoms are related to cancer. Included below is a summary of symptoms that you my want to report to your supported self-management clinical nurse specialist. If you experience any of the following symptoms or concerns it does not necessarily mean that your cancer has returned as they can be caused by many other common conditions, however you should report them.

Getting a recurrence or a new cancer can be frightening, but it is important to remember that if breast cancer returns it can usually be treated.

If you have any concerns please call the SSM team on 01737 231 992.

Change to be aware of.

We know that some of the treatments you may have been given during your treatment can cause unpleasant side effects. At your Supported self-management clinical nurse specialist appointment, with the help of your completed holistic needs assessment, we will be able to discuss these with you in greater depth.

These resources relate to the most common side effects people experience, including managing menopausal symptoms, fatigue, intimacy and relationships, breast and pain.

MAC12161 Managing the late effects of breast cancer treatment E05.pdf 

Menopausal symptoms and breast cancer (BCC18) | Breast Cancer Now 

bcc110-your-body-intimacy-and-sex-web-v2.pdf 

Coping with fatigue (tiredness) 

Managing pain after breast cancer treatment | Macmillan Cancer Support 

bbc15-reducing-the-risk-of-lymphoedema-web-pdf.pdf 

Moving forward from a breast cancer diagnosis isn't something you can do all at once. It's more of a process, and some parts may be easier than others. 

We have a Breast Cancer Now Moving Forward Course which takes place 2-3 times a year at the Macmillan centre at East Surrey Hospital. This course is run by Breast Cancer Now and places can be reserved by contacting your SSM team or by following the link below 

In person | Breast Cancer Now 

 

There is more information available about moving forward after a breast cancer diagnosis below. 

bcc197-moving-forward-web-pdf.pdf 

Macmillan Cancer Support 10 top tips after cancer treatment ends 

mac13615-e04-10toptips-lowrespdf-20200805-mb 

Research based evidence shows that being active during and after treatment has many benefits. In the short term, people who are more active tend to report less fatigue, lower levels of anxiety and depression, and a better quality of life.  

Longer term, being physically active to the recommended levels can improve your fitness and muscle strength while also reducing the risk of long-term conditions such as diabetes and heart disease. Alongside the healthy eating recommendations, being physically active can help with weight management and maintaining a healthy BMI, which is also important for long-term health. There is also evidence to show that those who are more active may reduce their risk of recurrence of cancer. 

Better Health - NHS  

Provides information on maintaining a healthy body weight, exercise, quitting smoking and alcohol reduction, along with mental health support. 

Local services in your area are also available to provide support 

Exercise Referral - YMCA East Surrey 

Crawley Wellbeing / Provided by West Sussex County Council and Crawley Borough Council 

Horsham District Wellbeing / Provided by West Sussex County Council and Horsham District Council 

 

There are also some helpful videos on the link below provided by the Surrey and Sussex cancer alliance. 

Cancer Alliance

We understand that your need for support doesn’t end when treatment finishes, and you may need some time to come to terms with all the changes that have taken place.  

Whether you are managing the ongoing side effects of treatment, thinking of going back to work, looking to improve your overall wellbeing, or if you are finding it difficult to cope, or your feelings are interfering with your enjoyment of life we can support you. Please contact your supported self-management nurse specialist on 01737 231 992. 

There are also local services which provide information, advice, counselling, complementary therapies and support groups in the Macmillan information Centre at East Surrey Hospital and the Olive Tree at Crawley Hospital, with some services available in Horsham and the South East London Cancer Help Centre.  

Olive Tree Cancer Support Centre 

East Surrey Macmillan Cancer Support Centre :: Surrey and Sussex Healthcare NHS Trust 

South East Cancer Help Centre 

You can also access talking therapy in the NHS by self-referral via the links below  

Who We Are | NHS West Sussex Talking Therapies 

Home :: Mind Matters Surrey - NHS Talking Therapies 

You can also access additional information on accessing emotional support via Macmillan Cancer Support and Breast Cancer Now. 

Help with how you're feeling | Macmillan Cancer Support 

Someone Like Me | Breast Cancer Now 

For male breast cancer, you can access a monthly virtual support group via the men’s virtual meet up 

Men's VMU 

If you have any concerns please contact your SSM team on 01737 231 992. When looking for information around Breast Cancer we would recommend evidence based UK websites such as 

 

We're Breast Cancer Now | Breast Cancer Now 

Macmillan Cancer Support | The UK's leading cancer care charity