Your medical team
As a newly diagnosed bladder cancer patient, you are embarking on a journey. Right now, the most important thing you should know is that you are not alone.
To add to the emotional storm whirling around you, is the fact that you need to take on board a whole raft of new information. To make the informed decisions that will be necessary, you will need to understand what your diagnosis means and what treatment options are open to you.
People with bladder cancer are cared for by a team of healthcare professionals, each with their own expertise. This is often known as a multi-disciplinary team (MDT). These specialists work together to make decisions about the best way to proceed with your treatment and are there to ensure you achieve the best quality of life during treatment and afterwards.
Who will be part of my medical team?
The members of your MDT may vary from one area to another and depending on your treatment programme but are likely to include:
- urologist: a doctor who specialises in treating conditions that affect the urinary tract
- clinical and/or medical oncologist: a specialist in the non-surgical treatment of cancer with drug treatments such as chemotherapy or immunotherapy or with radiotherapy (radiation treatment)
- pathologist: a specialist in interpreting biopsies and removed tissue
- radiologist: a specialist in interpreting x-rays and scans
- GP: your family doctor
- clinical nurse specialist (CNS): who will usually be your first point of contact with the rest of the team, also known as a key worker
In addition, you may see other practitioners, such as members of the community health services.
Try to make sure you have a medical team you trust and can communicate easily with. Share information with them and don’t hesitate to ask questions.
Get involved
Remember that you are the most important part of your healthcare team. To get the best out of them, you also need to be involved in your own treatment and care. A positive attitude will help to improve your quality of life and may even have a positive effect on the outcome.
Getting involved with your cancer begins by developing an understanding of your specific condition and what treatments you will be offered. You do this by talking to your CNS and other members of your team.
Getting involved with your cancer begins by developing an understanding of your specific condition and what treatments you will be offered. You do this by talking to your CNS and other members of your team.
Making decisions
With all the information that is now available, your medical team will be able to recommend the treatment that is best for you, considering both the details of your cancer and any other health issues you might have. They will take notice of the national guidelines for the treatment of bladder cancer that have been produced by NICE, as well as information from the British Association of Urological Surgeons and the European Association of Urology.
You can find the most important questions to ask your CNS (Clinical Nurse Specialist) and urologist in our booklets about the different types of bladder cancer.
Remember that every person is different – physically and mentally – so what is right for one person may not be right for another. Investigate ask questions, talk to people and listen to their viewpoints, then make the best decisions for you.
Talk, talk, talk about it
At your first meetings with your consultant, when you are initially diagnosed, it is very common to feel overwhelmed. You may feel too dazed to think of all the things you need to ask, let alone form those thoughts into sensible questions or understand and retain any of the answers. This is perfectly normal.
You will have the chance to ask those questions. Go home and think about what you have been told — or what you remember of it. This will throw up the questions you need to ask first. Write them down and take your notes with you to the next appointment. We have handy downloads on questions you may want to ask your GP and consultant at the bottom of this page.
Talk to your team about your concerns, share information with them, ask them about the things you don’t understand. That way, you will develop a trust in them and an ability to communicate with them. Never hesitate to ask questions.
Write it down
If possible, take a family member or friend to each appointment, so they can ask questions and hear the answers — often it takes more than one set of ears to get all the necessary information.
Remember to write down your questions in advance, and take along extra paper to write down the answers.
If making notes is a problem, you might also want to consider recording meetings, then you can let family members and friends hear what was said if you want to. Do make sure you ask permission of those present as some people find this intrusive.
If your questions aren’t answered completely or you don’t understand, ask them again.
A second opinion
Hopefully you will have developed a relationship of trust with your MDT and will feel the most important part of the decision-making process. However, if you ever feel that you want a second opinion you can always ask your consultant or GP for a recommendation. Make sure that you provide the second doctor with all the relevant information so that an accurate assessment can be given.
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
Download our handouts on talking to your medical team and questions to ask your GP and consultant.