Get help: Just diagnosed
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We've tried to answer all the frequently asked questions here, but don’t worry – if you can’t find the information you're looking for, you can always ask us a question in our Private Forum. The forum has hundreds of members, including other bladder cancer survivors and medical experts, who are all here to help you. We also recommend that you take a look at our pages on Symptoms and Diagnosis.
Take a deep breath. If you're feeling overwhelmed by your new diagnosis, read as much information as you can and then come back to this section once you’ve had a chance to digest the information, as it can feel like a lot to get to grips with. We cover the subject in depth so it is quite long. Some of the information below will sound very complex, so don’t expect to understand it all straight away. Take your time, take some notes if you think it would be helpful and write down any questions that come to mind.
If you're newly diagnosed with bladder cancer, the most important thing to keep in mind is that you're not alone. There are people and resources to help you and thousands of other people living with this disease. In the UK alone, there are over 100,000 men and women of all ages living with bladder cancer.
As a layman, there is never a good reason to be searching on the internet about cancer. Truth is, you're probably only reading this because someone has told you or someone you love that you have bladder cancer ... words you never expected to hear. Right now, you may well be overwhelmed, frightened and perhaps angry.
To make matters more complex, you have to learn enough about your diagnosis to make informed decisions. While knowledge is essential, it needs to be the right information that fits your situation and is reliable. When you are using the internet to find out more about bladder cancer, please keep in mind that a bladder cancer diagnosis can mean many things: it is as individual as you are. It may be one disease, but it comes in many forms and you will need to get to know your particular cancer. You will need to find out what type of bladder cancer it is, and then the stage and grade. This is why we don’t advise blanket research on the internet until you know the specific details of your diagnosis. Otherwise, you risk information overload and unnecessary worry.
Before reading more on our Just Diagnosed page, if you think you may have bladder cancer, but have not yet had any tests or investigations, we recommend that you take a look at our Diagnosis page. It is important to understand what tests and investigations you will need to have before your doctor can confirm whether or not you have bladder cancer.
It is normal to be scared!
No matter what the doctors have said to you, your first reaction will undoubtedly be fear. It has happened to every one of us when we were first diagnosed. It is also normal for your closest loved ones to be in the same state of shock and worry. Often their worries are even more intense than yours, as they will feel totally helpless in these early stages of your cancer journey.
Whether you have bladder cancer, or are waiting for your test results to get a definitive diagnosis, you will need to get used to waiting! At every stage going forward there will be times when you are just waiting – either for your next appointment, the results from the last tests, or to see if the treatment has worked. There will be times when you just have to wait.
The good news is that you're now 'in the system', where there are strict protocols in place to ensure that you get the treatment you need at the speed you need it. However, if you are worried at any stage about delays, do talk to your doctor or consultant, or ask for advice in our Confidential Forum.
Getting to know your medical team
Treating you is not just the work of your doctor or consultant. You will have a whole team of people, all with different skills and responsibilities, to help you in both your treatment and your aftercare.
Most hospitals use multi-disciplinary teams (MDTs) to treat bladder cancer. MDTs are teams of specialists who work together to make decisions about the best way to proceed with your treatment. They will normally include:
- Your urologist, who is a specialist in this field and will probably be your actual surgeon if surgery is required
- Your urologist’s team, who be a mixture of doctors at different skill levels (you will see a lot of these during your treatment)
- An oncologist, who is the cancer specialist for non-surgical treatments such as chemotherapy and radiotherapy
- A pathologist, who is a specialist in diseased cells and the one who looks down the microscope to identify your particular cancer
- A radiologist, who is in charge of any scans you have and interprets the results for the consultant and is a specialist in and radiotherapy treatment you may have
- A specialist urology cancer clinical nurse specialist (CNS), who will be your main point of contact with the medical team
There may be other specialists attached to your team dependent on your individual treatment and aftercare needs. The most important thing to remember is that you now have a medical team dedicated to keeping you alive and healthy! This team are there to do whatever they can to ensure your survival, and give you the best quality of life both during treatment and afterwards.
Talking to your medical team, especially your consultant and your specialist urology cancer nurse, is a very important part of taking control of your cancer. Remember that you are the most important part of your healthcare team. Try to make sure you have a medical team you trust and with whom you can easily communicate. Share information with your medical team, be totally honest with them, and do not hesitate to ask questions, no matter how silly they may feel. If your questions aren’t answered completely, ask them again. Research has shown that those with a positive attitude to their cancer have the best survival rates and are quicker to resume a happy and healthy life with their family and friends.
When you are first diagnosed, in your initial meetings with your consultant, it is very common to be too dazed to ask all the questions you want to, or even remember any of the answers. This is normal. If possible, bring a family member or friend to each appointment, so they can also ask questions and hear the answers – often it takes more than one set of ears to get all the necessary information. Write down your questions in advance, and bring along extra paper to write down the answers.
Your involvement should start with getting to grip with your cancer, understanding your particular cancer and what treatment you will be offered.
You do this by asking questions.
What questions should I ask?
Here are a few basic questions you can ask your consultant. Some of them you won’t understand straight away, but we explain them all in more detail in our downloadable guide.
- What kind of bladder cancer do I have? Is this a common type?
- What is the stage of the cancer?
- What is the grade of the tumour?
- What are my treatment choices?
- Which treatments do you recommend and why?
- What are the benefits of each kind of treatment?
- What are the risks and possible side effects of each treatment? Will the treatment affect my normal activities?
- Will the treatment affect my sex life?
- Can I speak to a patient who has already had this treatment?
As it can be hard to take in all the information you are given and the details of your cancer diagnosis at your appointment, it’s a good idea to write down the answers so you can refer to them later. It’s also good to have someone go with you, as two pairs of ears are better than one.
Questions for your team
Asking questions will help you understand more about your bladder cancer, the treatment and how you can improve your prognosis. We have pulled together the most important common questions that you might want to ask, and we also cover what the answers might be. We always suggest taking someone with you for these appointments to help remember everything that you are told.
Download our handy print-out guides to the QUESTIONS YOU NEED TO ASK. These are great to take to an appointment to make sure you cover everything that matters. They include questions …
- for your GP or before your initial tests.
- for your consultant when you get your first results
- about your treatment plan
- about how treatments may affect you
- about your recovery
The big question
There is nothing wrong in asking the question that is probably on your mind: “Am I going to die?”. Research has shown that this is the most common question asked by people just diagnosed with cancer, so it is normal to want to know this. You can ask it directly or say something like, “What is my prognosis?” Your consultant will have heard this question many times before, so don’t be afraid to ask it if you want to know. Depending on how much your consultant knows about your particular cancer at this time, they may or may not be able to answer it. Whatever your consultant says can only ever be a professional guess based on average life expectancies, so it’s best not to get too fixated on their answer. Be positive, aim to beat the odds. As you get more confident about your particular bladder cancer you might want to ask more detailed questions of your medical team.
The doctor/consultant cannot read your mind, so they won’t know how much you want to hear about your illness, so it really is up to you to ask the right questions. Some people don’t want to know all the details, and that’s okay for them. Everyone is different. If you think of another question later, write it down and ask it as soon as you can. There is no such thing as a bad question.
Now you have answers ...
But what do the answers mean? Let’s take a look at the most common answers you are likely to hear.
Your type of bladder cancer
The first thing you will be told is whether your cancer is non-invasive or invasive bladder cancer. Your treatment will be different depending on which one you have. Simply put, non-invasive bladder cancer (NMIBC) is when the cancer has only been found on the lining of your bladder and has not spread elsewhere. Muscle Invasive Bladder Cancer (MIBC) is when the cancer has spread past the lining of the bladder, possibly through the thickness of the bladder wall and sometimes even into adjoining organs. At diagnosis, roughly three-quarters of bladder cancers are early-stage, non-invasive cancers.
Knowing whether your cancer is non-muscle invasive or muscle invasive is not the end of the story in terms of the type of bladder cancer you have. These definitions are just about deciding whether the cancer has spread from the lining of the bladder or not. There are many different types of bladder cancer. The most common are:
- transitional cell carcinoma (also called urothelial cell carcinoma) – by far the most common form of bladder cancer
- squamous cell carcinoma
- small cell carcinoma
The vast majority of people will have one of these four main types of bladder cancer, but there are many others that occur on a less frequent basis. The ype of cancer you have will be part of the consideration when deciding what form of treatment will be best for you.
Your stage and grade
When your cancer is diagnosed, your consultant will need to know two main things about your cancer: how fast your cancer is growing (the grade) and how far it has spread (the stage). These are related. Faster-growing cancers are usually more advanced, and slow growing cancers are usually at an early stage.
The stage and grade of your cancer, alongside the type of bladder cancer, are the fundamental parts of your diagnosis.
More specifically, grade refers to what the cancer cells look like under the microscope, and how many cells are multiplying. The higher the grade, the more uneven the cells are and the more cells that are multiplying. Cancers can be low grade (Grade 1 or 2) and slow growing or high grade (Grade 3) and fast growing. Grade 3 cancers are also sometimes called carcinoma in situ or CIS.
Staging is a careful attempt to find out whether your cancer is just on the surface of your bladder or whether it has invaded the bladder wall, and if so, whether the disease has spread further and to what parts of the body.
Knowing the stage and grade of your cancer will help your consultant predict how it will grow and spread.
An important thing to understand is that staging and grading will be reviewed by your medical team as they continue with your investigations and treatment. As the team find out more they will check to make sure their first attempts to classify your cancer were correct – ensuring that the treatment you are recommended is still the right one for you. There is a very fine line between the different stages so don’t be surprised if your diagnosis changes. Cancer can often be seen as a moving target, and getting the right stage and grade knowledge is key to getting the right treatment for you.
Your team will send a sample of your cancerous tissue to a pathologist, who will exam the tissue in detail and determine what stage and grade of bladder cancer you have. The pathologist will write a summary report with the diagnosis and send it back to your consultant. This is quite a difficult time. You really want to know the details of your diagnosis, but you could have to wait several weeks between the initial investigation and getting your results. Although it’s frustrating, remember: your future treatment options depend on the results being as accurate as possible.
Let’s start with looking at the different stage classifications. These range between what is called T0 to T4. Really, what this classification does is define how far the tumour has spread from the site of origination. The higher the stage number, the further the tumour has grown away from its original site on the surface of the bladder.
Here is a diagram illustrating the medical definitions of the stages of bladder cancer tumours.
- T0: No tumour
- TIS: Carcinoma in situ (CIS)
- Ta: Papillary tumour without invasion of the bladder wall
- T1: Tumour invades the connective tissue under the surface lining
- T2: Tumour invades the muscle wall
- T3: Tumour penetrates the bladder wall and invades the surrounding fat layer T4: Tumour invades other adjacent organs
Now let’s look at the Grades of bladder cancer. The grade is expressed as a number between 1 and 3. This is usually explained as a G1, G2 or G3 cancer. The higher the number, the less the tumour resembles a normal cell. Sometimes, your consultant may refer to the tumour simply as low, medium or high grade.
So what do all these numbers and letters really mean?
Different consultants use slightly different language when they tell you the details of your diagnosis. Some will simply say something like ‘you do have bladder cancer but I’m glad to say that we’ve caught it at an early stage which is really good and it doesn’t look too aggressive’ or, if it is found to be much more invasive ‘I’m afraid that the cancer has already spread a bit so we will probably be looking at some serious surgery here’.
Some consultants will tell you exactly what they have found using the Stage and Grade scales and tell you that your bladder cancer is, say, T2G1 or T4G3. Your consultant will then tell you what this means, but it is very likely that it will be difficult to take all this information in at the beginning, so do use the tables above to remind yourself. To complicate matters a bit more, your medical team will often refer to the complete TNM system. The T stands for the Stage as above, the N stands for whether there is cancer in the lymph nodes and M, whether they cancer has already spread to other parts of your body. The N scale goes from N0, with no cancer in the lymph nodes, to N1, when there is cancer in 1 lymph node in the pelvis, N2 when there is cancer in more than one lymph node in the pelvis, and then N4 when there is cancer in one or more lymph nodes in the groin. The M in this scale stands for Metastases or more simply, Mets. This is about how far the cancer has spread. M0 indicates that it is still just in the bladder and M1 indicates that it has spread to other organs in your body.
As you will gather from all of this, the higher the number in all these things indicates that the bladder cancer is more advanced and will most likely mean more aggressive treatment. Remember that this will just be a snapshot in time. As the investigations continue and your treatment is fine tuned, don’t panic if these numbers change. It is sometimes a judgment call to say exactly where you are on these scale.
With the knowledge of which particular bladder cancer you have and how they react to different treatments, your consultant will use all this knowledge to decide which is the best treatment for you and your bladder cancer. A treatment designed just for you.
Don’t forget that we have some great downloadable information to help you.
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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.