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Surviving bladder cancer

Whether you can spare just the odd hour or two, or can commit to more time, there are many roles where your time can make a real difference.

We'd love you to get involved.

As a charity run by patients and caregivers, we understand what you are going through. You are not alone.

 

A life changed ...

As a bladder cancer patient, you’re travelling on a journey that started the moment you heard those words none of us ever expects to hear: “You have bladder cancer”. From that moment, your life changed.

But if you have been through diagnosis, tests and treatments — and possibly emerged from all that — you will know that you are not alone. And as you face the challenges moving forward, remember that help and support will be there for you every step of the way. There are thousands of others living with this disease, and there are people and resources to help you find the information you need to make the best choices, and the support you need to get you through.

If you are anything like most people who are living with a bladder cancer diagnosis, you are likely to have gone through the whole gamut of emotions — and more than once. Even after successful treatments you will still need regular check- ups and possibly further treatments, which are important to try to make sure the cancer does not return. It is perfectly normal to get anxious when you are due for a check-up. Most of us do. If you can view it as a way of keeping clear of cancer, that may help.

Be positive and take control

Your future with bladder cancer is an unknown future — but then again, life is always like that! What is different for you is that you have experienced — or are now going through — a dramatic period of your life. From our own personal experiences, the best advice we can give is to face up to the challenge and remain as positive as you can. The way to do that is to embrace your cancer. Take control. Make sure you continue to do in life what you have always wanted to do. You will find that just about everything is still possible, even if the practicalities may be a bit more demanding.

Achieving this attitude is not an easy thing to do, so take small steps at first. There are lots of people talking on our private Facebook forum about how they are coping with and enjoying life, sometimes against all odds. (See our getting support page for details of how to join and other support available.)

But ... let’s be honest about the negatives. Being positive may sound impossible — right now because everything can feel so overwhelming. From the time of first diagnosis, dealing with the initial shock, the treatment and its aftermath encompass a whole range of physical, psychological, emotional, social and financial issues. It can be extremely tough. 

To survive all this, you need to focus on improving your quality of life, whether that means dealing with physical issues like pain or emotional issues like anxiety or depression.

Don’t let it be overwhelming

Bladder cancer and its treatment can also have an effect on your social life as well as your health. Troublesome urinary symptoms such as burning and irritation when weeing or incontinence issues after treatment are common side-effects. Many people also experience sexual problems. These side-effects can be very challenging and may require changes in work, hobbies and other social activities.

Sexual issues can also be difficult to talk about with your doctor, spouse or partner. But try to remember that your doctor will have seen these symptoms many times before and will not be embarrassed by them. In fact, they will have suggestions for ways to help you manage these side-effects effectively. They can refer you to sexual therapists, specialist cancer or stoma nurses, physical therapists and other specialists who can help. Talk to your clinical nurse specialist (CNS) about advice and support. 

Quality of life

Bladder cancer is the most expensive cancer for the NHS to treat and monitor per patient. This is because there is a chance it may recur so it demands frequent monitoring and sometimes repeat treatments, or if it does recur, a completely new treatment regime.

This can mean that the doctor's first priority may not always be your quality of life. As you come to terms with life after your initial treatment or surgery, you will find that doctors do not always raise quality-of-life issues. And they won't know that there is a problem unless you bring it up. We strongly encourage you to talk with a doctor, nurse or other healthcare provider about any concerns you may have during or after your treatment. They are there to help you live a full, happy life after a bladder cancer diagnosis. It is up to you to take the responsibility of telling them how you feel.

Consider making a list of what you want to discuss. For example, is there a new symptom that you want to ask the doctor about? Do you have a concern about how a treatment is affecting your daily life? It may be helpful to take a family member or friend to your appointments.

If you have more than a few questions, put them in order and ask about the most important ones first. Bring up the things that are really on your mind early in your appointment rather than leaving them to the end.

I'm a survivor!

Once you are through treatment, you will transition from being a patient to being a survivor. How we deal with becoming a cancer survivor is as individual as we are. While one person may go from being a couch potato to running marathons, another may feel lost and hopeless.

There is no right or wrong way to deal with surviving cancer.

Many of us have experienced a feeling of deflation once treatment has finished and we move on to regular check-ups. This is because, while in treatment, you feel you are actively doing something about your cancer, but once treatment ends you have time to deal with the emotional impact of your diagnosis and what it means to your life.

You may have questions about what lifestyle changes you should undertake to give yourself the best future life possible.

  • should I stay at work, reduce my hours or change my job?

  • how much exercise should I do and what type?

  • can I carry on with the social activities I enjoy?

  • is my diet nutritious?

  • am I getting enough sleep?

Everyone is different, so you'll need to work out the details of how you plan your lifestyle. You may have things you know you definitely want to do, or others that are just possibilities but they are all worth investigating. If you have always wanted to do a skydive, find out where you could go, whether you would be able to do it and the logistical details. If you want to try it, go for it. Always wanted to try ballroom dancing? Don't let anything stop you.

If you can't get your head round what you need to do, talk to family or friends, raise your questions in the Fight Bladder Cancer private online forum or speak with your doctor or CNS and they will help you.

 

Alternative and complementary therapies

There is no scientific evidence that alternative treatments using diet, herbs or homeopathic remedies, can be successful. If you are considering including any such remedies in your treatment programme, do discuss it with your consultant before taking any action.

However, many complementary therapies – such as yoga, meditation, acupuncture, aromatherapy, reflexology, mindfulness and massage – can help you to combat stress and help you feel more relaxed and able to cope with your ongoing fight against bladder cancer.

A note on CBD

It is important to remember that Cannabis does not cure cancer.

However, the NHS has approved medical cannabis for adults with vomiting or nausea caused by chemotherapy when other treatments were not suitable or have not helped. It can only be prescribed by private doctors on the General Medical Council specialist register. 

We suggest all healthcare professionals complete the e-learning module on cannabis-based products for medicinal use, available for free through Health Education England.

There are still many barriers to access legal prescriptions of medical cannabis. We are currently supporting Project Twenty21, which was set up in response to the dire state of medical cannabis prescribing in the UK, in the hope that access to legal prescriptions will become easier. 

 

Let’s talk about sex

Whatever treatment you have had, and especially for those who have had a radical cystectomy, the procedures will almost certainly affect your sex life and it is important that you are aware of this and understand that there are plenty of things you can do to re-establish your sexual relationship.

The most likely things you may experience are:

  • loss of libido
  • men: inability to achieve or sustain an erection
  • women: vaginal dryness, shortening of the vagina.

First and foremost, don't be embarrassed to ask for help. Your GP, CNS and consultants are dealing with it all the time and will be happy to help you to resolve the issue.

Self-image and loss of libido

Whatever physical issues you may encounter, having major bladder surgery will almost certainly affect the way you feel about your body and it can have a dramatic effect on your emotions. This starts with the loss of dignity accompanying many of the investigations and treatments but try to view them as necessary and a means of restoring your health. Take photos when you are feeling good to look at when you are feeling down and remind yourself that it’s not all bad.

Coming to terms with potential changes in your sexual function is an important part of the healing process and may begin with conversations within ourselves, thinking about our sex life before treatment and what it might look like afterwards. Ultimately, sex is about connection and pleasure – whether it's with ourselves or those around us. Cancer can undoubtedly shake up our lives and affect our feelings of vulnerability and sexual interest. However, the importance of sexual wellness should not be overlooked by ourselves nor our clinicians.

Some people who acquire a stoma as part of their treatment feel that it has affected their body image and become a barrier to engaging in sex, either with others or alone. If you do find that you want to cover a urostomy pouch, Vanilla Blush, Etsy sellers, and other online stores have a range of high-waisted underwear specifically for pouches with a sewn-in pocket for comfort.

Try to talk with your partner openly about how you feel and make time for some tender moments that start to re-establish your connection. Sex is not the only way to communicate your love for someone.

Counselling is available via your GP or consultant so seek help and find an expert to discuss your problems with and that will be the first step towards normalising your sexual relationship.

Not feeling good about yourself very often leads to a lack of interest in sex. Don't ignore it.

Men

On the physical side, erectile dysfunction (ED) can be a consequence of any bladder cancer treatment, but it is easy to diagnose and there are many remedies, one of which is likely to be suitable for you. Your team will advise which is the best thing to try first. You could consider asking for an early referral to an ED specialist clinic. Don’t be discouraged if you have to try more than one option before resolving the issue.

The main options are:

  • PDE5 inhibitors in the form of tablets, such as Viagra® and Cialis® are available over the counter in the UK, although you should always discuss any medication with your GP or consultant
  • tablets have been used successfully in combination with vacuum devices, although vacuum devices are no longer available in some areas
  • treatment through injection or a pellet gently inserted into the tip of the penis, or a cream called alprostadil are other often- successful treatments
  • if none of these works for you, there is the option of a penile implant; this tends to be a last option as it does involve major surgery but it results in about 86% satisfaction rates for both the patient and their partner.

Penile implants

Discuss the options with your medical team so that you have all the information you need. Procedures are performed in hospital under a general anaesthetic, with its associated risks. You can read more about the different types of implant below.

Implant options

The first option is malleable implants: two semi-rigid rods which are inserted into the penis. There are no additional components and therefore the risk of device malfunction is low, but some patients do not like the idea of a penis remaining rigid all the time.

Instead, the most commonly used implant is an inflatable penis prosthesis as it is concealed when not in use and mimics a natural erection. It consists of two inflatable silicone cylinders and a pump, which is placed in the testicles. When inflated, fluid moves from the reservoir into the cylinders, then returns when deflated.

Women

Women’s sexual problems tend to be emotionally charged and counselling is sometimes needed. Physical issues may take less time to solve than the restoration of your sexual desire, as this is often so bound up with self-image.

Chemotherapy, radiotherapy and particularly surgery will have effects on your sex life, in particular:

  • any treatment can lead to loss of libido and vaginal dryness
  • surgery is likely to lead to a shortening of the vagina, making penetrative sex painful or difficult
  • damage to the nerves and muscles during surgery can make the genital area less responsive, especially if the blood supply to the area is compromised
  • having your ovaries removed will bring on menopause if you haven't already reached menopause

The main treatments are:

  • hormonal cream to increase moisture
  • using a vaginal dilator, a plastic, cone-shaped device designed to gently stretch your vagina and make it more supple; you use it for a five to ten-minute session every day, gradually increasing the size
  • pelvic floor exercises to improve blood flow, which in turn improves the moisture levels in the vagina
  • sexual activity is also helpful, although make sure you take it at your own pace and use suitable lubricants.

If you are having sexual difficulties, do not suffer in silence. Talk about it with your GP or CNS.

We have all felt this way sometimes

Never think that you are the only person who has experienced emotional problems — you are not alone and there are people who understand and can help.

Depression and anxiety

While for many a feeling of anger and sadness can linger after treatment, for some it can develop further into clinical depression or anxiety. If that happens to you, it is important that you talk to your GP as soon as possible about getting help to overcome your depressive feelings. They may be able to offer counselling, or medication may be appropriate in the short term.

Fear of recurrence

This is very common – every ordinary ache and pain can make you fear the cancer has returned. Time will help this fear lessen, but it may never completely go away, and most commonly returns around the time of a check-up.

If you find that you are preoccupied to the extent that your fear of recurrence is having a significant impact on your everyday life, do talk to your doctor about getting help to deal with these feelings.

Stress

Stress can be brought on by many aspects of life: financial, social, work, to name just a few. Once treatment is over and you begin to get back to the routine of life, you'll find all the things waiting for you that you didn't get done while dealing with the cancer. Don’t feel as though you have to try to do them all at once. Slow and steady is better than crash and burn!

A little stress can be a great motivator. But if you begin to feel that your stress levels are becoming unmanageable, talk to your doctor straight away about getting help to deal with your feelings. 

Man lying on bed feeling overwhelmed

Be prepared for highs and lows

Everyone experiences fears and worries that don’t go away, and some of your fears, as a cancer survivor, will recede but then come back and hit you when you least expect it. The important thing to recognise is that this is normal. Don't worry. It’s all right to be scared again, get angry again and just want to go and hide in a corner for a while again.

We've all been there. And we've all come out fighting.

A happy future

As well as joining us at Fight Bladder Cancer’s online forum, talk to your doctor about what you can do to improve your health and cut your chances of your cancer coming back.

For many, this is a good time to take a look at your lifestyle and make changes — exercise and diet can be a good place to start. There is no magic food that will keep the cancer from coming back, but a healthy balanced diet will help. Take a look at our tips on diet and nutrition for bladder cancer patients.

Go to all your check-ups, even if you are stressed because you are worried about a recurrence. Not going will only make that fear worse in the long run. Admit to yourself that the stress is there and find ways to deal with it. Joining a support group can be very beneficial as it gives you a place to talk about your feelings.

Techniques for managing stress can be as simple as a cup of tea with a friend, quiet meditation or going for a walk.

Getting your thoughts out and into words helps a lot of people, so many like to write their personal story for us here to read. You might find that helpful too.

Above all, keep busy! Too much time to think about your fears can make them feel more intense.

Remember ... life is going to be as good as you make it. Every day has the possibility to be great, full of fun, laughter and love. Enjoy each day, and then tell us at FBC about it!

Support for you

Please remember that you can contact us at any time for support, whether you are a patient or care for someone who is. 

Our helpline is open from 0900-1630, Monday to Friday. There's an answerphone if we're busy, but we will call you back as soon as we can. Call 01844 351 621 or email info@fightbladdercancer.co.uk

Talking to other people who have had the same tests, investigations and diagnosis can help. Our private online forum on Facebook is available 24/7, 365 days a year. Find out how to join and other ways you can talk to patients and carers via our getting support page. 

More information

You can download copies of our relevant Patient Information Booklets below. If you would like a free copy sent to you by post or email, add your details to our booklets order form and we'll get them to you.

Get in touch

We’ve done everything we can to make all the information on this site as accurate as possible. Whilst we have had support from a small team of medical professionals advisors to review the general medical content of this site, please remember, that only YOUR medical team can give YOU specific advice about YOUR symptoms or illness. We encourage you to discuss any potential options with them.