Overview

Follow-up is how we talk about what happens when you are on watchful waiting after a cancer diagnosis. This has been carefully planned for you.

Watchful waiting is an approach to monitoring prostate cancer and only starting treatment if it gets worse or causes symptoms.

This information explains your follow-up care. If you have any questions, please speak to a doctor or nurse caring for you.

Watchful waiting for prostate cancer

Watchful waiting is a way of monitoring prostate cancer that is not causing any symptoms or problems. The aims are to:

• monitor the cancer
• avoid treatment unless you get symptoms

If you are on watchful waiting, you may never need any treatment for prostate cancer.  In other cases, the cancer may grow more quickly than expected. Symptoms may then start to appear, such as:

• problems with peeing (urinary problems)
• bone pain

If this happens, you can start treatment to control the cancer and improve your symptoms.

Personalised follow-up (PFU)

Your prostate cancer team has carefully planned your follow-up care. This includes a blood test at certain intervals to check your PSA level.

The test measures the amount of a protein called prostate-specific antigen (PSA) in your blood. It can help us to find if the cancer is a cause for concern.

You can contact your prostate clinical nurse specialists if you have any concerns or worries. For your PSA blood test, you can:

• come to a blood test clinic at Guy's and St Thomas' NHS Foundation Trust
• have the test arranged through a GP surgery

You do not need to come for a follow-up appointment. 

Personalised follow-up (PFU) is sometimes called:

• personalised stratified follow-up (PSFU)
• patient initiated follow-up (PIFU)
• open access follow-up (OAFU)
• supported self-management (SSM)

These are all ways to describe your planned follow-up care.

What to expect during personalised follow-up (PFU)

You get a letter inviting you to go to each PSA blood test as part of your follow-up care. 

You have PSA blood tests scheduled every 6 months. We explain if you need to have the tests more frequently than this.

We send you a health questionnaire called a health MOT when it is time to have your blood test. This helps your team to check that everything is OK.

You can call your prostate clinical nurse specialists if you have any concerns or new symptoms.

Getting your PSA blood test results

After your PSA blood test, you get your results as a letter by post or through MyChart if everything is normal. MyChart is our patient app to view your test results and health record. You can log into MyChart on your mobile phone, tablet or computer.

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

It is important to make sure that the hospital has your correct, up-to-date address and phone number.

If you do not get the results 4 weeks after having your PSA blood test, please contact us.

When to contact your prostate clinical nurse specialists

You can contact your prostate clinical nurse specialists to:

• report any new symptoms
• talk about any worries or concerns that you might have about prostate cancer or your follow-up care plan

Concerning symptoms might include:

• new pain that does not get better
• your pee suddenly slowing down

When you phone the prostate clinical nurse specialist (CNS) helpline, you can speak to someone and ask to be called back. A specialist nurse then calls you back by the end of the next working day.

If the nurse feels that it would be best for you to return to the hospital, we will give you a clinic appointment.

You can contact the prostate clinical nurse specialist helpline at any time during your follow-up care.

Quality of life survey

Measuring quality of life helps us to understand the impact of cancer, and how well people are living after their diagnosis. This includes people's:

• emotional or social wellbeing
• finances
• ongoing physical problems, such as tiredness and pain

You get a survey from NHS England electronically or through the post 18 months after your diagnosis.

The survey tells us how cancer might have changed your quality of life. This helps us improve how we support people to live as well as possible after a cancer diagnosis. It can also help you to talk about the support that you need with your team.

Useful information and support

Your prostate clinical nurse specialists explain what support is available to you. A GP may also be able to tell you about support in your local area.

The organisations listed in this section can give you more information about prostate cancer and support with the condition.

Dimbleby Cancer Care

Dimbleby Cancer Care offers information and support to anyone affected by cancer. There is a drop-in information area staffed by specialist nurses. We offer complementary therapies, psychological support and benefits advice for patients and carers.

We are based in the Welcome Village of the Cancer Centre at Guy's and the Dimbleby Macmillan Support Centre at Queen Mary's Hospital.

Phone: 020 7188 5918
Email: [email protected]

Prostate Life Support Group

If you are being treated at Guy's Hospital and are affected by prostate cancer, why not join our discussion group? The meetings usually take place on the last Friday of every month from 2 to 4pm. You do not need to make an appointment to come to the group.

Phone: 020 7188 7339
Email: [email protected]

Other organisations

Prostate Cancer UK is a prostate cancer research, awareness and support charity. It has information and support for anyone affected by prostate cancer, and a free helpline run by specialist prostate care nurses.

Phone: 0800 074 8383 (Monday to Friday, 9am to 5pm and Wednesday, 10am to 5pm)

Cancer Research UK has information for anyone affected by cancer.
Phone: 0808 800 4040 (Monday to Friday, 9am to 5pm)

Cancer Care Map helps you to find cancer support services in your local area.

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

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

Macmillan Cancer Support offers practical and emotional information and support online or by phone. This includes financial information and support with work. 
Phone: 0808 808 00 00 (7 days a week, 8am to 8pm)

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, self-employed people, job seekers and carers to manage cancer and work. It gives coaching, training and advice.