Overview

'Follow-up' means how we support you after your prostate cancer surgery. Your follow-up has been carefully planned by your prostate cancer team.

We offer personalised follow-up, which aims to reduce the number of outpatient appointments that you come to after finishing treatment.

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 prostate cancer.

Your follow-up includes check-ups and support from:

• regular blood tests
• post-pelvic surgery clinic
• end of treatment clinic
• prostate clinical nurse specialists' helpline

You can contact your prostate clinical nurse specialists at any time if you have any worries or concerns.

Regular blood tests

After surgery, you have regular blood tests. These blood tests help us to check if your cancer has come back.

The tests measure the amount of prostate-specific antigen (PSA) in your blood. After your prostate has been removed, the amount of PSA in your blood should be very low or undetectable. However, in a small number of people, the PSA may rise. This does not necessarily mean that prostate cancer is returning, but we will need to continue monitoring your PSA level with blood tests.

We send you a letter inviting you to attend each blood test. You can attend our hospitals or arrange the test with your GP.

Schedule for blood tests

For the first year, you have blood tests every 3 months:

• 3 months after surgery
• 6 months after surgery
• 9 months after surgery
• 1 year after surgery

After 1 year, you have blood tests every 6 months.

After 5 years, you have 1 blood test each year.

Getting your results

We send your results in the post if everything is normal. This means you do not need to come in for an appointment to get your results.

If there are any concerns, your prostate clinical nurse specialists will call you.

It's important to make sure the hospital has your correct address and telephone number. If you do not get your results 4 weeks after having your PSA blood test, please contact us.

Post-pelvic surgery clinic

At the post-pelvic surgery clinic, we support you with all aspects of your quality of life after cancer surgery. You can talk to us about concerns with:

• pee leaking and other urinary issues
• problems with sex and intimacy
• other aspects of physical and emotional wellbeing

You have 4 appointments at the post-pelvic surgery clinic. These will be:

• 3 months after surgery
• 6 months after surgery
• 1 year after surgery
• 2 years after surgery

Before you go to the clinic, you need to have a blood test to check your PSA level. You should do this at least 1 week before your appointment so it can be reviewed. We contact you to arrange this test.

We also ask you to complete questionnaires before and after surgery. Some questionnaires will not be relevant to everyone but they help assess certain aspects of your progress at each stage and help set goals for your rehabilitation. Anything not covered in the questionnaires will be discussed in your appointment.

Support between clinic visits

If you have any questions about the clinic please email [email protected].

You can also call:

• 077 1734 6821 about sexual problems
• 020 7188 6783 about urinary issues

We will usually get back to you within 24 hours on weekdays.

You can also contact the prostate CNS team for any other concerns or questions.

End of treatment clinic

After your last appointment at the post-pelvic surgery clinic, we invite you to an end of treatment clinic.

At this clinic, you talk about your follow-up with your nurse. You fill in 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.

Prostate clinical nurse specialists' helpline

You can call our helpline at any time during your follow-up. You can talk to us about:

• any new symptoms
• side effects of treatment
• any worries or concerns

When you call the helpline, you can leave a message asking to be called back. A nurse will call you back by the end of the next working day. If they feel that it would be best for you to come back to the hospital, you will be given a clinic appointment.

Phone 020 7188 7339 Monday to Friday, 9am to 5pm

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

Your prostate CNS’s 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.

These organisations can also offer advice and information.

Prostate Cancer UK has information and support from nurses for people diagnosed with prostate cancer. Phone: 0800 074 8383

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.

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.

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

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

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.

Support groups

After a diagnosis of prostate cancer, it can be helpful to speak to other people who have experienced prostate cancer. There are a number of support groups and communities available to you and your loved ones.

You can also visit Tackle Prostate Cancer or Prostate Cancer UK to find a group near you.

Prostate Life!

Prostate Life! is a support group run at Guy's Hospital for people being treated for prostate cancer at:

• Guy's Hospital
• King's College Hospital
• The Princess Royal Hospital
• The Queen Elizabeth Hospital

We invite speakers to meetings who talk about different topics and there'll be s an opportunity to speak to other men. Loved ones are also welcome.

Meetings usually take place on the last Friday of every month from 2 to 4pm. You do not need an appointment. For more information please email [email protected] or call 020 7188 7339

Brother to Brother, Man to Man

A group for Black men coping with the diagnosis and treatment of prostate cancer. At this group, you will:

• meet with other Black prostate cancer patients
• share your story and hear from others
• learn from professionals
• support each other
• raise awareness
• talk about what matters to you

Partners, family members and carers are all welcome. To register for this group please contact [email protected]

The Advanced Prostate Cancer Club

The APCC is a group for people being treated at:

• Guy's Hospital
• King's College Hospital
• The Princess Royal Hospital
• The Queen Elizabeth Hospital

The group is for men (and their loved ones) who are on hormone therapy or have advanced prostate cancer. The group offers information sessions, activities and courses, exercise classes, weekly quizzes, days out, pamper sessions, art classes and more! Email [email protected]

METRO Walnut

METRO Walnut is a peer support group for LGBTQ people with prostate cancer. It's a safe and confidential space for you and your partner(s) to talk about what's going on in your life. You can ask questions, share your experiences and get support from people who are also dealing with prostate cancer. Call the community team on 020 8305 5000 or find out more at metrocharity.org.uk/community/metro-walnut