Overview

'Follow-up' means how we support you after your gynaecological cancer treatment.

We offer personalised follow-up to reduce the number of outpatient appointments that you come to after finishing treatment. Instead of having regular clinic appointments, you can contact the clinical nurse specialist (CNS) team at any time.

You can call to talk about any worries or questions you have, including for:

• any symptoms that worry you or make you think your cancer may have returned
• ongoing problems or side effects after your treatment
• emotional support or have any worries or concerns

We send you a letter every year to confirm you're still on the personalised follow-up programme and remind you of signs and symptoms to look out for. After 5 years, we discharge you from our care.

You might also hear your follow-up being called PSFU, PIFU, OAFU or SSM. These are all ways to describe your planned care after treatment for gynaecological cancer. Read more about personalised follow-up.

Your follow-up includes support from:

• end of treatment clinic
• clinical nurse specialist (CNS) team

End of treatment clinic

After you complete your treatment, we invite you to an end of treatment clinic. This might be after surgery, chemotherapy or radiotherapy. Your appointment will be with a gynaecology CNS to talk about your follow-up.

At this clinic, we complete a holistic needs assessment (HNA) to help your team develop a care plan. The assessment is called holistic because you can talk about any area of your life and how cancer affects it.

The HNA makes sure your physical, practical, emotional or social needs are met, and you have all the support you need.

Read about holistic needs assessments on Macmillan Cancer Support.

We also give you a treatment summary. This explains the treatment you have had, any possible side effects, signs of your cancer coming back, and information about the medicine you are taking.

We send a copy of your treatment summary to your GP, and you will be able to keep a copy. Your nurse can also give offer you health and wellbeing support.

Read more about your treatment summary.

Clinical nurse specialist (CNS) team

The clincal nurse specialist team are here to help with physical symptoms and other aspects of your life.

After treatment, living with and beyond cancer can make you feel many different emotions. It's important to understand that recovery can take time. You can call the CNS team to talk about anything that's worrying you, including:

• low mood or feeling depressed
• feeling isolated
• concerns about sex
• money worries
• problems related to your diagnosis or treatment

You can contact them at any time during your follow-up. They will organise a telephone call or appointment to discuss any symptoms, side effects from treatment or other concerns you have.

Phone the helpline on 020 7188 2707 and leave a message asking to be called back

We monitor the line between 9am and 5pm, Monday to Friday. A gynaecology CNS will call you back by the end of the working day.

Symptoms

If you have any symptoms that worry you or last longer than a few days, please contact the CNS team to talk about this. Having these symptoms does not mean your cancer has returned. You can contact us for:

• bleeding from your vagina
• vaginal discharge that smells or is bloodstained
• bleeding after penetrative sex
• pain or bloating in your tummy
• pain in your pelvis
• bleeding from your bottom
• unexplained weight loss
• reduced appetite or feeling sick (nauseous)
• changes in how much you poo or pee
• swollen legs (lymphoedema)
• feeling generally unwell
• a dry cough that doesn't go away

The nurses will talk about the symptoms you have. If we think you need a review, we'll book you into the surgical follow up clinic within 2 weeks. Here, a doctor will examine you and any further tests will be organised. We might ask you to have a blood text or scan before going to the clinic. If this is needed, we'll organise this.

When to contact your GP

You might still develop other health conditions that are not related to your cancer. You should continue to see a GP for any concerns. If needed, your GP can contact the CNS team and arrange foe you to be seen by a member of the hospital team.

Once we discharge you from the personalised follow-up programme (5 years after your treatment finishes) your GP will refer you to a team at your local hospital for any concerning symptoms that might be related to cancer.

Quality of life survey

Measuring quality of life helps to understand the impact of cancer, and how well people are living after their diagnosis. This includes people’s emotional or social wellbeing, finances, and ongoing physical problems, such as tiredness and pain.

You will be sent a survey from NHS England (electronically, or through the post) 18 months after your diagnosis. This is separate from the post-pelvic surgery clinic and is an England-wide project. The survey tells us how cancer might have changed your quality of life. This helps us improve how we support people to live their lives as well as possible. It can also help you to talk about the support you need with your team.

Useful information and support

Your specialist team will give you information about the support available to you. Your GP might also be able to tell you about support in your local area.

Dimbleby Cancer Centre

Dimbleby Cancer Care offers information and support to anyone affected by cancer. They are based in in the Welcome Village at Guy’s Cancer Centre, and the Dimbleby Macmillan Support Centre at Queen Mary’s Hospital. Support from Dimbleby Cancer Care can include:

• information and support nurse specialists
• complementary therapies
• psychological support
• welfare and benefits advice

Phone 020 7188 5918 or email [email protected]

Other organisations

These organisations can also offer advice and information.

Cancer Research UK has information for anyone affected by cancer. Phone: 0808 800 4040

Cancer Care Map helps you find cancer-related services in your local area.

Cancer Wellbeing London has information about health and wellbeing workshops, and support across London.

Citizens Advice Bureau gives free and confidential information and advice to help people with financial, legal and other issues.

Eve Appeal has a nurse-led information service and support for anyone affected by gynaecological cancers. Phone 0808 802 0019 or email [email protected]

Life on ADT (hormone therapy) runs online education classes about hear what to expect from hormone therapy including side effects, and strategies for helping you succeed in making lifestyle changes.

Macmillan Cancer Support has practical and emotional information and support (online or over the phone), including financial information and support with work. Phone: 0808 808 2020

Ovacome supports people with ovarian cancer. Phone 0800 008 7054

Peaches Womb Cancer Trust has information on their website for people with womb cancer.

Shine Cancer Support offers support for young adults in their 20s, 30s and 40s.

Target Ovarian Cancer offers information and support for people with ovarian cancer. Phone 020 7923 5475

Trekstock offers support for young adults in their 20s or 30s who are affected by cancer.

Working With Cancer helps employees, employers, the self-employed, job seekers and carers to manage cancer and work. They give coaching, training and advice.