Questions For Your Doctor

From when you are first told that you have bladder cancer, and throughout your own treatment journey, you will probably have questions - about your cancer, areas of your treatment that you would like further information about or how your bladder cancer might affect your daily life.   It can often be difficult to think of what you want to ask when you are at a hospital appointment, and may be feeling unwell or anxious.  Also, it's sometimes not easy to have to understand about your own medical condition at first and any treatment options available.

It can be helpful to think about what questions you have or might want to ask before you go to any appointments and write them down (or print off this page) and take them with you.   You might also want to have someone with you at the appointments to help with these questions or to make notes of the answers.  Don't be afraid to ask your doctor, nurse or member of your care team any questions you have, or to ask them again if you weren't sure of the answer.

The following list of questions may be helpful as a starting point for conversations with your doctor, cancer nurse or other members of the team, or as an addition to information your doctor or nurse may give you.   Not all of these questions may be relevant to your own situation, but we hope they help.

Some examples of questions ...

Questions about Tests and diagnosis

  • What test or tests will I need? Why are they needed?
  • What does each test involve? How long will it take? Do I need to take anyone with me? Can I drive afterwards? Do I need to stay in hospital? Do I need to stop any of my medication beforehand? Will I feel unwell after the test?
  • When am I likely to get the results?
  • What happens next?
  • What is a cystoscopy? How is a cystoscopy done?
  • What is flexible cystoscopy and what is rigid cystoscopy?
  • How long will it take? Will it be painful? Will I need an anaesthetic?
  • How will I feel afterwards?
  • Do I need any scans? What will these scans show?
  • Do I need to do anything to prepare for having a scan?
  • Where will I have the scans?
  • When will I get the results?
  • What is a TURBT (transurethral resection of bladder tumour) operation?
  • Why do I need a TURBT?
  • When will I have the operation? Where can I have it?
  • Should I do anything to prepare for the TURBT?
  • How long will I stay in hospital? How long will I need to recover?
  • When will I be told the results? Will the results confirm whether I have bladder cancer?
  • Is there any alternative to having a TURBT? What could happen if I decide not to have it?
  • Will I need to have other treatment or an operation after having a TURBT?
  • Will I be given mitomycinC during the operation? Will this stop my bladder cancer from coming back?

Questions after Tests and Diagnosis

  • What type of bladder cancer do I have?
  • Has my cancer spread beyond the bladder?
  • What is the stage and grade of my cancer?  What does that mean?
  • How does this affect my treatment?
  • Do I need any other tests before we can decide on treatment?
  • Do I need to see any other doctors
  • What is the likely outcome (prognosis) of my cancer?

Questions about support

  • What support is available if I want to alter my diet, stop smoking or take more exercise?
  • What other kind of support is available?
  • Is my GP going to be involved?
  • Who can I talk to if I have questions or am worried?
  • What support is there for family or carers? What are they entitled to? Who can they talk to?
  • What can family or carers do to help?
  • Is there a Patient Support Group for bladder cancer patients at this hospital or close by? If not, why not?

Questions about Treatment

  • What are my treatment options?  Is one option better than another for me?
  • What are the advantages or disadvantages of any treatment options?
  • What is the aim of each treatment?  What is the success rate of treatment?
  • How much experience do you have of treating this type of bladder cancer?
  • Should I get a second opinion? How do I do that? Can you recommend someone?
  • How soon do I need to start treatment?
  • What should I do to prepare for treatment?
  • How long will treatment last? How often will it happen?  What will it be like? Where will it be done?
  • What risks or side effects should I expect? Are these side effects temporary or permanent?
  • How can these side effects be managed?  What symptoms or side effects should I tell you about straight away?  How else might the side effects impact on my life?
  • Can I exercise?  Should I change my diet?  Will I still be able to work during my treatment?
  • Will any other medical conditions affect the success of my treatment or any side effects?
  • How will we know if the treatment is working?
  • How likely is it that the cancer will come back? Is there anything I can do to lower this risk?
  • What will we do next if the treatment doesn't work or if the cancer comes back?
  • Are there any appropriate clinical trials I can be part of?
  • Where can I find more information?
  • Can I talk to another patient about treatment?
  • Is there a specialist nurse I can see?

About Surgery

  • Why do I need an operation? What is the aim of the surgery? What will be the results?
  • Is there another choice of treatment? What will happen if I decide not to have the surgery?
  • What does the surgery involve?
  • How long will I need to stay in hospital?
  • If my bladder is removed, what are my options for a bladder reconstruction or continent urinary diversion?  What are the advantages and disadvantages of each?
  • Will I need to wear a stoma bag?  Is there a stoma nurse I can talk to?  Where do I get the stoma equipment I need and do I have to pay for it?
  • Will you take anything else out as well as my bladder?
  • What are the risks of surgery?
  • Is there an appropriate clinical trial I could join?
  • How long will I take to recover after the surgery?
  • How many of this type of operation do you do each year?  What are the results?
  • Can I talk to someone who has had the type of operation I'm going to have?
  • Is there anything I should do to prepare for the operation?
  • Are there any after-effects, either short or long-term? What can I do to alleviate these?
  • Will I have any pain afterwards?
  • After I leave hospital, am I likely to need help at home/with daily life? How long for?
  • When will I be able to go back to work or drive again?
  • How will it affect my sex life?
  • What happens after surgery? Is there follow up or further treatments?
  • Who do I contact in between appointments if I'm worried?
  • What happens if the cancer comes back?

About Radiotherapy

  • How long is the course of radiotherapy?
  • How many sessions will be needed and how often? How long is each session?
  • Will I be able to carry on working during this course of treatment?
  • What can I expect from the treatment itself?
  • What are the potential side effects?
  • How should I manage these side effects? When should I report them to the doctor?
  • Is there anything I need to do in terms of skincare or diet?
  • What is likely to happen if I choose not to have radiotherapy?
  • Will I need any extra tests during treatment?
  • When will I have checks after treatment finishes?
  • Are there any clinical trials I can be involved with?

About Chemotherapy

  • How long is the course of chemotherapy?
  • How often does it happen and how many times?
  • Where does it happen?
  • What are the names of the drugs?
  • What side effects are possible?
  • Who should I contact if I feel unwell during treatment?
  • Will any of my other tablets affect the chemotherapy?
  • Will any of my other health problems affect the chemotherapy?
  • What will the chemotherapy do?
  • Will I have any tests during the treatment?
  • How will I be followed up?
  • Is other treatment possible?
  • Are there any clinical trials I can be involved with?

After treatment

  • How often will I have follow up appointments when my treatment finishes?
  • Will I have further follow up tests?
  • What will happen at my follow up appointments?
  • Who do I contact if I am worried between appointments?
  • Are there any limits on what I can do?
  • What symptoms should I watch out for?
  • What kind of exercise should I/could I do now?
  • What else should I do?  Should I change my diet?
  • Will I need further treatment in the future?
  • What will my options be if the cancer comes back?

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NCRI Bladder Cancer Clinical Studies Group 25/07/2017

The National Cancer Research Institute (NCRI) are looking for new scientific members of the Bladder & Renal Clinical Studies Group (CSG) - calling urologists with special interest in bladder cancer - deadline 31 July 2017 - link to ad here http://bit.ly/2tGaSuD

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