Get help: Surviving bladder cancer

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You'll need to come to terms with dealing with bladder cancer for the rest of your life. Whether your cancer is invasive or non-invasive, you will have to live with this condition. For at least the first 3 to 5 years after diagnosis you will need to continue to see your medical team for check-ups and possibly repeat treatments, depending on the treatment regime you are under.

Be positive & take control

Your future with bladder cancer is unknown. But then again, life is always like that! What has changed is that you're experiencing, or have been through, a dramatic period of your life and you need to remain as positive as you can. The best advice we can give, from our own personal experiences, 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 you have to change some things a bit due to practicalities.

If you join our Confidential Forum you will soon see how other people with bladder cancer are coping – indeed, enjoying – life, sometimes against all odds. Getting involved can also encourage a positive attitude to your future and help you get on track with a happy life.

But ... let’s be honest about the negatives

Looking honestly at the reality, you need to understand that a bladder cancer diagnosis will be a life-changing event. Dealing with the diagnosis, the treatment and life after – including all of the psychological, emotional, social, health and financial issues cancer patients cope with from the time of first diagnosis – 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 depression.

Because bladder cancer has such a high rate of recurrence, patients need to see their doctors and consultants regularly to make sure it hasn't returned. Even when there is no sign of a recurrence, these tests may cause a lot of emotional distress. If you ever feel overwhelmed or are not getting as much pleasure out of life as you are used to, your doctor can recommend someone to talk to. For instance, some social workers and psychologists specialise in helping people manage chronic diseases like cancer. Bladder cancer treatments can also have an effect on patients’ social lives and their overall health. Burning and irritation when weeing or sexual problems are common side effects.

Some people may have incontinence issues after bladder removal surgery. These side effects can be very challenging and may require changes in work, hobbies and other social activities. They are also difficult to talk about with your doctor, partner, or friends. However, your doctor may have suggestions for ways to help you manage these side effects, and can refer you to sexual therapists, wound/ostomy care nurses, physical therapists and other specialists who can help.

Bladder cancer is the most expensive cancer for the NHS to treat and monitor per patient, because of the need to monitor and possibly repeat treatment or even start a new treatment if the cancer returns. As you come to terms with life after your initial treatment or surgery, you will find that doctors do not always ask about quality-of-life issues. Often, 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 your concerns during treatment and after. They are there to help you live a full, happy life after a bladder cancer diagnosis.

Once you are through treatment, you will transition from being a patient to a survivor.

Many of us have experienced a feeling of deflation once treatment ends and we move on to regular checkups. This is because, while in treatment, you feel you're actively doing something about your cancer, but once treatment ends you have time to emotionally deal with your diagnosis and what it means to your life. You may also have questions about what lifestyle changes you should undertake to give yourself the best future life possible.

Dealing with the aftermath of a cancer diagnosis is as individual as we are. While one person may go from being a couch potato to running marathons, another may feel depressed and hopeless. There is no right or wrong way to deal with surviving cancer, but there are some things that we know can help.

Emotional issues common to cancer survivors

Depression

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 about getting help.

Fear of recurrence

Fear of recurrence is very common – every ache and pain can make you fear the cancer has returned. Time will help lessen this fear, but it may never completely go away, particularly around the time of a check-up. For most of us, it becomes a less dominant fear as time goes by. If you find that you are preoccupied to the extent that your fear of recurrence is significantly impacting your life, do talk to your doctor about getting help dealing with these feelings.

Stress

Stress can take many forms for a cancer survivor – financial, social, work – to name a few. Once treatment is over, everything you didn’t get done while dealing with the cancer is waiting for you. Don’t feel like you have to do it all at one time. Slow and steady is better than crash and burn! Again, if you feel that your stress is dominating your life, talk to your doctor about getting help dealing with your feelings.

Some of these fears and worries will never go away. They will recede at times and possibly come back and hit you when you least expect it. But don’t worry, this is normal. It’s alright to get scared again, get angry again and just want to go and hide in a corner. We’ve all been there.

A happy future

As well as joining us on here and in other cancer forums, 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 their lifestyles 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. We have a handy download on diet and nutrition if you would like more specific information.

Just one MUST for you: if you're a smoker, please STOP. And if you're not a smoker, do try and keep away from smokers and smokey atmospheres.

Go to all of your check-ups, even if you're stressed and 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. A cup of coffee with a friend, quiet meditation or a long walk can help. Joining a support group can also help as it gives you a place to talk about your feelings.

Getting your thoughts out and into words helps a lot of people, so writing your own personal story for us here to read could help.

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 about it!

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Can we help?

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.