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You are not alone
This Patient Guidebook was created by people just like you â bladder cancer patients and their caregivers. Itâs designed to offer you support, encouragement and tips on how to deal with the procedures and treatments for your bladder cancer. It can help you understand your disease and what to expect, the treatments you may be offered and how to manage your disease in the years ahead.
We are not medical professionals and you should always turn to your medical team for advice first. But we have been where you are now and have experienced what you are feeling. To ensure accuracy, this Guidebook has been reviewed by a team of medical professionals.
This Guidebook will talk about common approaches to treating non-muscle invasive bladder cancer (NMIBC). Keep in mind that there can be some differences, depending on the practices of your medical team and on your specific situation. We will not be using a lot of medical language, except where it might help you better communicate with your medical team and understand your disease. Youâll find a handy glossary of terms on Bladder Cancer Canadaâs website at https://bladdercancercanada.org.
Remember, youâre not alone. All of us at Bladder Cancer Canada are passionate about helping you to live a full and satisfying life â even after a diagnosis of bladder cancer. Weâre doing it and so can you.
The birth of this guidebook
What you are about to read was the result of the creative vision of Greg Neely, former Vice-President of Bladder Cancer Canada and a bladder cancer patient himself. Greg saw the need for a single source of information written from the viewpoint of Canadian bladder cancer patients and their caregivers. He wanted it clear, simple, and easy to understand â was Gregâs style.
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Many of us never knew bladder cancer existed before our diagnosis. But, itâs more common than you might think, as itâs the 5th most common cancer in Canada.
Approximately 75% of bladder cancers is the type you have â non-muscle invasive. We hope it never happens, but you should also be aware that about 20% of bladder cancer that was originally diagnosed as non-muscle invasive, progresses to muscle invasive. Bladder Cancer Canada also has a Patient Guidebook available for muscle-invasive bladder cancer (MIBC).
As with many types of cancer, one of the leading risk factors of the disease is smoking. Those who smoke may be up to four times more likely to get bladder cancer. People who work with certain chemicals may also be at risk â leather workers, hairdressers, mechanics and painters, among other occupations. Exposure to radiation has also been linked to bladder cancer. Caucasian men may also be at greater risk.
But the simple truth is that many will develop bladder cancer for no known reason. You may be one of those people. At this point, asking âwhyâ is not nearly as helpful as focusing on âwhat now.â
The earlier bladder cancer is diagnosed, the better the outcome of treatment. Since there is no âscreeningâ test for bladder cancer at this time, most people are diagnosed after they show some symptoms, such as blood in the urine. Because symptoms such as blood in the urine can be a sign of other conditions, such as a urinary tract infection (UTI), there can be a delay in diagnosing bladder cancer.
Here are some of the tests and procedures used to detect bladder cancer. Please note that, since individual cases and facilities are different, not all of these tests may be required or available.
a sample of urine is examined under a microscope to see if there are any tumour cells in the urine.
a hollow tube with a lens is inserted through the urethra (the tube which drains urine from the bladder) and slowly moved into the bladder, so that doctors can examine the lining of the bladder for tumours. This is the main way bladder cancer is detected. The procedure can be done in a doctorâs office or hospital setting. Most often a local anesthetic is used to numb the urethra, but sometimes the procedure is done as an outpatient with sedation.
a surgical procedure through the urethra done in a hospital setting under general or regional (your anesthesiologist injects medication near a cluster of nerves to numb only the area of your body that requires surgery) anesthesia in a hospital setting, to biopsy any abnormal tissue that is found during a cystoscopy. During the TURBT, the doctor will remove tumours and samples of the bladder muscle near the tumours. The material removed is sent to a lab for analysis under a microscope. The result of the analysis is used to help determine the stage and grade of the bladder cancer. (See the following section on âStaging and grading your bladder cancer.â)
Once the bladder has healed from your diagnostic TURBT, a second TURBT may be performed within about six weeks if the tumour was aggressive. Â This is to assure that a diagnosis of MIBC has not been missed. Your doctor may prescribe some of the following treatments to help prevent the cancer from recurring and/or progressing to MIBC.
Another procedure often done during the TURBT is called EUA (exam under anesthesia). In this procedure, the urologist evaluates the bladder to see if any masses can be felt.
In some facilities, Cysview (hexaminolevulinate HCl) with blue light cystoscopy may be used during the TURBT procedure. A solution containing the hexaminolevulinate HCl (called an âagentâ) is inserted into the bladder about an hour before the TURBT. The agent essentially âmarksâ the tumour, which can be more clearly seen using a blue light. The procedure is designed to enhance detection and visualization of NMIBC bladder cancer, in particular carcinoma in situ (CIS), to help ensure the resections (surgical removal) of all suspicious lesions. It reveals lesions that may not be seen with standard white light cystoscopy. Note that Cysview is not available in all medical facilities.
help detect if the cancer has spread and to help with staging, the medical facility may use a scan. Depending on the facility and disease status, âComputed tomographyâ (CT or CAT) scan, âMagnetic resonance imagingâ (MRI), or a âPositron emission tomographyâ (PET or PET-CT) scan may be used.
Uses sound waves to create a picture of the internal organs. It can help find out if the kidneys or ureters are blocked.
After diagnostic tests are done, your doctor will review all the results with you. If the diagnosis is cancer, these results also help the doctor describe the cancer. This is called staging and grading, which is described in the next section.
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Laboratory analysis of the material taken out during the TURBT is used to determine the type and stage of the cancer. According to the Canadian Cancer Society, staging classifies a cancer based on its extent in the body.
Tis â Carcinoma in situ, sometimes call CIS.
Ta â Non-invasive papillary carcinoma.
T1 â The tumour is in the first layer of the bladder lining, but not the surrounding muscle.
T2 â The tumour has grown into the muscle.
In stage T2a, the tumour is in the inner half of the muscle layer and in stage T2b, the outer half.
T3 â The tumour has spread to the fatty layer around the bladder muscle. T3a describes a microscopic tumour and T3b a large tumour that can be seen or felt.
T4 â The tumour has spread to organs outside the bladder (T4a) or to the wall of the abdomen or pelvis (T4b).
Non-muscle invasive means that the tumour has not invaded the muscle of the bladder (muscularis propria). It has grown into the layer of cells that line the bladder (transitional epithelium) and perhaps into the connective tissue below (lamina propria). The stages of NMIBC are typically referred to as Tis, Ta and T1 on the pathology report.
In addition to showing what stage your cancer is, the pathology report following your TURBT will also generally show whether your tumour is âhigh gradeâ or âlow grade.â Low grade tumours are less likely to spread and invade the muscle than high grade tumours.
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Usually, NMIBC is treated with âintravesical therapyâ. This means that a medication will be placed into your bladder to treat the bladder cancer. Sometimes, the medication is only placed into the bladder one time immediately after TURBT. Your doctor may also recommend that the medication be placed into your bladder several times a year for 1 to 3 years. There are several types of intravesical therapies, which can be broken down into chemotherapy or immunotherapy called bacillus-calmette Guerin (BCG). These will be discussed in more detail below.
The type of intravesical therapy and the number of sessions you receive will depend on the results of your pathology report. For example, if you are diagnosed with low grade NMIBC you may receive intravesical chemotherapy. If you are diagnosed with high grade NMIBC that is invading the first layer of the bladder (T1HG) you will likely receive BCG. Your doctor will prescribe the therapy that is right for you.
A drug called BCG (Bacillus Calmette-Guérin) may be inserted into your bladder. It is a weakened form of the tuberculosis mycobacterium which stimulates immune responses within the bladder to destroy the cancer cells. It is inserted through a catheter once a week for about six weeks.
This is called the âinduction phaseâ of treatment. If you respond well to the induction phase, your doctor may prescribe a âmaintenance phaseâ, where the medication is instilled into your bladder once weekly for 3 weeks, every three to 6 months for up to three years. This reduces the risk of the cancer recurring or progressing. As mentioned above, BCG is not used for all patients with NMIBC.
Youâll hold the BCG inside your bladder for up to two hours. Medical facilities have different treatment protocols, but you may be asked to spend time lying down and perhaps rolling on each side and front and back to ensure the chemical makes contact with the whole bladder lining.
Maintenance treatments of BCG may be prescribed to reduce the risk of the tumour recurring. This often involves a three-week treatment plan every three to six months for up to three years.
The initial treatments usually produce few if any side effects, but as the treatments progress, you may experience burning when urinating, a sense of urgency to urinate or the need to urinate more frequently. Some people report fatigue and a mild fever, achiness and nausea. There can be severe reactions, such as pain, inflammation and bleeding, but these are not the norm and diluted or reduced amounts of BCG can be given to help combat these side effects. Rarely, some people develop severe side effects from BCG therapy and the therapy has to be discontinued as a result.
There are several chemotherapies that may be used to treat NMIBC. These chemotherapies are given inside the bladder, much like BCG. Common chemotherapies used to treat NMIBC include: mitomycin C, epirubicin, pirarubicin, gemcitabine, doxetaxel or a combination thereof. Much like the BCG schedule, the chemotherapy is given once weekly for six weeks (induction phase), followed by a maintenance phase (which may be monthly) for up to one year.
Pembrolizumab is a drug that is given through the intravenous (IV) route (through your veins). It may be prescribed by your doctor if you have NMIBC that did not respond to BCG therapy.
It is a type of immunotherapy that is used to treat many different types of cancer, not just bladder. It treats cancer by increasing your bodyâs ability to kill cancer cells. In other words, it stimulates your bodyâs immune system to attack cancer. It is given every three weeks for up to two years. Because pembrolizumab is given through an IV, it may affect organs other than your bladder (including bowels, skin, lungs, liver, kidneys, and others). Because of this, side effects may include: diarrhea, cough, problems with breathing, or rash. Most of the time side effects are mild, but in some cases, they may become severe and need urgent treatment. If you receive this type of therapy, you will need close monitoring to assure that you do not develop a serious reaction.
In addition to intravesical therapies, your doctor may discuss other options with you, including surgical removal of your bladder (radical cystectomy). This option is reserved for people who have very worrisome features on their pathology report or for those who do not respond to treatment with BCG. More information on radical cystectomy can be found in the Patient Guidebook for Patients Facing Radical Cystectomy.
Research into bladder cancer and its treatment is ongoing around the world. It is important to remember that BCG remains the âstandard of careâ treatment for NMIBC, and that most studies are looking at new treatments for people who do not respond to BCG. Studies are now looking into:
A good outline of current research is available on the American Cancer Society website at https://www.cancer.org/research/currently-funded-cancer-research.html.
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In addition to the therapies approved by Health Canada, you may be able to access other bladder cancer therapies through a clinical trial.
A clinical trial is a research study that tests how well a new medical approach works in people. Each study answers scientific questions and tries to find better ways to prevent, screen for, diagnose, or treat a disease such as bladder cancer. By participating in a clinical trial, youâll be helping researchers answer important questions that will further the development of new effective treatments. Clinical trials may also provide you with another option in your treatment plan.
Clinical trial websites will help you find clinical trials that may be available in your area. Hereâs one website you can check: www.canadiancancertrials.ca. This site lists Canadian trials only. You can narrow your search by selecting bladder cancer under âSelect a Cancer Typeâ. You may need to select âShow Moreâ if bladder cancer does not display on the list you see. You can also search by province, city or trial centre.
Itâs very important that you discuss with your medical team whether a clinical trial is right for you.
Be Alert
With any medication or treatment, if serious concerns arise you should seek immediate medical attention. Youâll want to keep your doctor aware of how you respond to treatments and be prepared to take additional medication if major side effects are a problem. Do not skip treatments without your doctorâs approval, since the side effects may be minor compared to the benefits of taking the medication.
It may help to call someone who has had the same treatment. Bladder Cancer Canada can put you in touch with someone who has been on the same journey you are on. Simply call or email us.
Of course, itâs a great relief to hear your doctor say the words âall clearâ after your first post-operative cystoscopy. However, thatâs not the end of this chapter of your life. Your doctor will tell you how often cystoscopies should be repeated. Every three months is typical for the first two years following an âall clearâ to ensure early detection should the cancer come back.
With careful attention to your lifestyle, you can live a healthy life. Be encouraged. Be diligent. And choose to help someone else who faces this diagnosis to look ahead with a positive attitude.
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The Bladder Cancer Canada website (www.bladdercancercanada.org) has a wealth of information, including links to other reliable websites.
The Internet provides lots of information, some of it accurate and helpful and some inaccurate and anything but helpful. However, many world-class cancer centres provide information online that may help you. But the best source of information in your specific case is your own medical team.
If you are uncertain about your doctorâs advice, you are entitled to a second opinion. Please speak to your family doctor or Bladder Cancer Canada about who you can be referred to.
As the first and only Canadian patient advocacy organization dedicated to bladder cancer issues, Bladder Cancer Canada is proud to provide patients, their caregivers and families with the support and resources to help navigate a bladder cancer diagnosis. Bladder Cancer CanadaâŻdoes not receive any government funding and relies on donations to offer programs and services, such as this free guidebook, to patients and their families.
Individual donations are greatly appreciated andâŻcan be made online at bladdercancercanada.org or by calling 1-866-674-8889. Your support will help Bladder Cancer CanadaâŻto continue and expand our programs and services to help even more patients and caregivers.
Each September, we host our annual walk, Canada Walks for Bladder Cancer, in cities across the country. This event plays a vital role in our mission to increase awareness of bladder cancer in communities across Canada, provide support to bladder cancer patients and fund innovative research. The money generated from this event makes up around two-thirds of our annual income.
Help create a world where bladder cancer is just a memory.âŻJoin us at BCCwalk.ca.
Tell your friends, family and healthcare providers about bladder cancer and Bladder Cancer Canada. You can speak with others on the same journey and be an encouragement and a lifeline to them. To find out how you can helpâor to get help yourselfâgo to the Bladder Cancer Canada website at www.bladdercancercanada.org. Our website has excellent, reliable, and active discussion forums where you can ask questions or share your story. You can also find information on volunteering or sign up for our e-newsletter to stay up-to-date on upcoming events and research news.
We wish you every success in your journey with bladder cancer.
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Bladder Cancer Canada was formed in 2009 by bladder cancer survivors. We are a national charity with a mission to:
Bladder cancer awareness among Canadians is at a relatively early stage. There is little public awareness of the symptoms of the disease and, unless diagnosed with this cancer, most people are not well educated about it.
Bladder Cancer Canada creates awareness about this cancer since an early diagnosis usually results in a better outcome.
For more information, visit www.bladdercancercanada.org.
Bladder Cancer Canada
4936 Yonge St, Suite 1000 | Toronto, ON M2N 6S3
info@bladdercancercanada.org or call us at 1-866-674-8889
Facebook: /BladderCancerCanada
Linkedin: /bladder-cancer-canada/
YouTube: /BladderCancerCA
Instagram: /bladdercancercanada/
Weâd like to thank those who took part in the production and review of this Guidebook: Greg Neely, Jack Moon, Ieva Fraser, Ed Moffat, Elizabeth Moffat, Valerie MacLeod, Kyle McKenna,David Guttman, Dr. Andrea Kokorovic & Dr. Robert Siemens.
The project manager and editor of the Patient Guidebook series is Stephen Wilson.
We are grateful to AstraZeneca, Merck, Roche and Verity Pharmaceuticals, whose generous financial support has made this guidebook possible.
Translation of this guidebook supported by Verity Pharmaceuticals, Janssen, Merck Canada & our generous donors.
Charitable Reg. No.: 83612 6060 RR0001
Revised June 2023
