PRD diagnosis and referrals

Getting a PRD diagnosis

We know that women and people with a cervix who have PRD tend not to seek support or medical help . We surveyed over 600 members of our community who had cervical cancer treatment and, while over 8 in 10 (80%) experienced at least one long-term symptom, many did not ask for help – including over 3 in 10 (39%) who had bowel changes after treatment .

Why can it be difficult to get a PRD diagnosis?

PRD is a complex group of symptoms, so it can be difficult to get a diagnosis. This is sometimes because symptoms start months or years after finishing treatment, by which time you may have left the follow-up care of your hospital healthcare team. Instead, you will be seeking support from your GP, who may be less understanding of your treatment and potential long-term impact.

PRD symptoms are not always recognised as being caused by PRD. This is probably because each symptom could be a sign of another condition or treated as a standalone problem. As a result, it might not always be immediately obvious that your symptoms are related to cervical cancer treatment, especially if several years have passed since it finished.

Why don’t people seek help?

The reasons we hear for not seeking help often include women and people with a cervix feeling that they ‘should be grateful’ they no longer have cervical cancer, or that these symptoms are something they have to put up with – part of the price of having treatment. But this is not the case. There is no need to struggle with PRD alone, or put up with symptoms that are impacting on your quality of life. Help and support are available, with medical treatments and lifestyle changes to help you manage whatever you’re going through.

Talking to healthcare professionals

If you have any PRD symptoms, including those we haven’t mentioned in this information, speak to a trusted healthcare professional: 

• If you’re still under the care of your hospital healthcare team, you could talk to your cancer specialist nurse (CNS) or cancer doctor (consultant). 
• If your symptoms don’t start until after you’ve been discharged from hospital care, you can speak to your GP or practice nurse at your local surgery. They should have a treatment summary from your hospital healthcare team – this is sent to them after your treatment is finished. It explains the treatment you had, any effects you may experience afterwards and how to manage or make referrals for these. 

We know that these symptoms can sometimes seem embarrassing, or you might have convinced yourself that they are something you can live with. Having this conversation with a healthcare professional isn’t always fun or easy, but it is important. Try to focus on the long-term goal – to get these symptoms under control and not having as big an impact on your day-to-day life. If you are worried about how your chosen professional will react, remember that they are difficult to shock. You won’t be the first or last patient to talk to them about these issues, and it’s their job to listen to you and find solutions.

Whoever you speak to should be able to assess you, then signpost or refer you to the best support services for your needs. In some cases, this may simply be information about self-management and lifestyle changes to help alleviate your symptoms. Or, depending on the symptoms you have, you may be referred to a specialist such as:

• a gastroenterologist – a doctor who can diagnose and treat stomach and intestinal problems
• a urologist – a doctor who can diagnosed and treat bladder problems
• a sexual therapist – an expert in helping people with problems with sex
• a dietician – an expert on what to eat based on your individual situation
• a lymphoedema specialist – an expert in managing lymphoedema.

Questions to ask

If you are not sure where to start, it may help to ask your healthcare professional some of these questions:

• Do you have a copy of my treatment summary from my hospital healthcare team?
• Have you used the ALERT-B questionnaire to assess my symptoms? 
• How often should we have appointments to follow up on my symptoms?
• Can you refer me to a specialist for [the symptom you have]?
• What self-management options can we explore for [the symptom you have]?
• Can you help me access counselling or emotional support for these symptoms?

The ALERT-B questionnaire is used to identify bowel and bladder symptoms after pelvic radiotherapy . Because it only focuses on these symptoms, it is important to explain any other symptoms you are having too.

Keep a symptoms diary

You can help your healthcare professional to help you by keeping a symptoms diary. You could track:

• the symptoms you are experiencing
• how often you are experiencing them
• anything that makes the symptoms worse or flare up
• the impact they are having on your life. 

Keeping this diary can help them to understand and assess the problem, as well as figure out the best way to treat or manage any symptoms. 

Remind them of your treatment

If it’s been a while since you finished cervical cancer treatment, your GP may not immediately recognise your symptoms as late effects of radiotherapy. If this is the case, don’t be afraid to suggest PRD – it might be the prompt they need to connect the dots. 

You could also share our report on the Long Term Consequences of Cervical Cancer and its Treatment with them.

Download our report > 

Get another opinion

Don’t be disheartened if you struggle to get a PRD diagnosis at first. If you feel that you aren’t being heard or you haven’t got what you needed, it is your right to ask for a second or third opinion. You could also ask for a referral to someone who specialises in your particular symptoms. 

If you are having a hard time getting a diagnosis and need support or simply to feel heard, you can call our free Helpline on 0808 802 8000. The Pelvic Radiation Disease Association (PRDA) also have a support line that can offer guidance.

Visit the PRDA website > 

COVID-19 and accessing PRD support

While it can be difficult to get a PRD diagnosis and appropriate support at any time, it’s important to acknowledge that the COVID-19 pandemic has made this more challenging. It has had an impact on many services, including those for patients with PRD.

Changes to appointments

GP surgeries and other primary care services have had to put in place measures to keep their patients and staff safe.  In many cases, this means that appointments will be done over the phone or by video call. 

We know this can make appointments more difficult for practical reasons, such as having to have a good internet connection or a reliable phone. It can also change the way you communicate with your GP or practice nurse about symptoms that may feel very personal or embarrassing. You may feel positive about this change – it could make it easier to speak openly about issues like bowel, bladder or sexual problems. But you may feel like it limits how open you can be, which can make the process of getting a diagnosis and treatment feel more challenging.

Read more about virtual appointments >

Fewer specialist services

It may also be more difficult than usual to access the specialist services for symptoms of PRD. Many of these services were already underfunded and have been put under greater pressure by the pandemic. Staff from some clinics have been moved to different posts as a result of the pandemic, and we have heard from patients who have had appointments cancelled, postponed, or changed to phone or video calls.

If you are struggling to access support, it’s important to tell your GP or another healthcare professional. They should be able to direct you to services that are currently open in your area.

What we are doing

If you have been struggling to access support, it’s understandable that you may be feeling frustrated, isolated or unsure about where to turn. Although services are now beginning to resume or adapt, it may take some time for them to return to normal. 

We are actively looking into which services have been affected and how big of an impact the pandemic has had. We have also spoken with members of our community who have been affected. As a result, we are making a number of policy recommendations about how NHS Trusts can make sure there is as little disruption as possible for PRD patients.

What you can do

Although this may sound disheartening, you can still take practical steps to getting a diagnosis or support. If you are struggling to access your usual services or to get a new referral for support, you could contact your GP or hospital healthcare team to find out what’s currently available in your area. You may feel you don’t want to ‘bother’ doctors or be seen as a ‘nuisance’ in the current situation. However, cervical cancer and its side effects haven’t stopped for the pandemic and neither should your care. 

Getting support with a PRD diagnosis and referrals

If PRD symptoms are having an impact on your life, you are entitled to and deserving of support. Accessing support for PRD may be even more difficult at the moment because of the coronavirus pandemic, so you may need to be more persistent than usual. If you are not sure where to turn, you can give our free Helpline a call on 0808 802 8000. Our trained volunteers can talk through your options or simply listen to what’s going on.

Check our Helpline opening hours > 

Sometimes connecting with others who have gone through a similar experience can be helpful. Our online Forum lets our community give and get support. You can read through the messages or post your own – whichever feels most comfortable.

Join our Forum > 

Useful organisations

Pelvic Radiation Disease Association (PRDA)

A UK charity providing information about PRD. Has an online community as well as hosting national and local events for people with PRD.

www.prda.org.uk

Action Radiotherapy

A UK charity dedicated to improving radiotherapy treatments. Provides information about radiotherapy, including side effects.

www.actionradiotherapy.org