Print this page →
You are not alone
This Patient Guidebook was created by people just like you â upper tract urothelial carcinoma patients and their caregivers. Itâs designed to offer you support, encouragement and tips on how to deal with the procedures and treatments for your disease. It can help you understand your disease, what to expect, the treatments you may be offered and how to manage your disease and its side effects.
Weâre 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 upper tract urothelial carcinoma. Keep in mind that there can be some differences, depending on the practices of your medical team and on your specific situation. Weâll 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 upper tract urothelial carcinoma. Weâre doing it and so can you.
Print this page →
As opposed to urothelial carcinoma of the bladder (lower urinary tract cancer), upper tract urothelial carcinoma (also called âupper urinary tract cancerâ) is a cancer in the lining of the upper urinary system.
This can occur in three places:
Upper tract urothelial carcinoma (UTUC) represents approximately 5% to 10% of cancers of the urinary system (the rest occur in the bladder). The most common UTUCs are found in the lining of the kidney. Cancer in the ureters makes up about 25% of UTUCs.
UTUCs start in the inner lining of the kidney and ureters (called the âurotheliumâ). Cancer that starts in the urothelium is called âurothelial carcinoma.â An older name for this is also âtransitional cell carcinoma.â
Itâs not known exactly what causes UTUC, but there are some risk factors and associations:
Although you may have no symptoms of UTUC, some signs and symptoms are similar to those of bladder cancer:
Less common symptoms may include:
Itâs important to note that you may not have all these signs and symptoms. Also, some of the symptoms listed above may be signs of other conditions. Consult your health care provider if you are concerned about any of these symptoms.
If your family physician suspects you have some type of cancer of the urinary system, you should be referred to a urologist, a specialist in urinary issues. The urologist will likely start by taking a health history, examining you, and ordering blood and/or urine tests.
The next step in diagnosis is usually a CT (computerized tomography) scan. To help see any tumours clearly, the scan may be done using a contrast dye. An MRI (magnetic resonance imaging) scan may also be used. If you are unable to get a CT or MRI, an ultrasound can be considered.
Cystoscopy may be recommended as patients with UTUC are at risk for bladder cancer as well. A cystoscope is a special fibre optic tool inserted through your urethra to look inside the bladder and urinary tract. This is typically done with local anesthesia.
To get a more detailed look inside your upper urinary tract, the urologist may recommend ureteroscopy, which is similar to a cystoscopy, but looks inside the ureter and kidney. Ureteroscopy is usually done under general anesthetic. A sample of tissue may be taken (a biopsy) for analysis in a laboratory.
Print this page →
Laboratory analysis of the tissue taken out during the ureteroscopy is used to determine the type and grade of the cancer. Grading describes how aggressive the cancer looks under the microscope. The CT or MRI scan together with the biopsy determines the stage of the cancer, which describes how deeply the cancer has grown into the kidney and whether there is any spread to other parts of the body.
Staging includes a Tumour (T) category that describes the tumour itself:
T0 â No evidence of tumour
Tis â Carcinoma in situ (flat tumour).
Ta â Non-invasive papillary carcinoma.
T1 â The tumour is into the subepithelial connective tissue
T2 â The tumour has grown into the muscle
T3 â The tumour has spread beyond the muscle into the surrounding fat or into the kidney tissue itself
T4 â The tumour has spread to adjacent organs or through the kidney into the fat
In addition, the Node (N) category describes whether or not the UTUC has spread to lymph nodes near the tumour itself. The N stage categories include: NX, N0, N1, and N2.
The Metastasis (M) category describes whether the cancer has spread to organs and/or lymph nodes in other parts of the body that are more distant from the bladder. The category M1 means that the cancer has spread to distant parts of the body and the category M0 means that the cancer has not spread to distant parts of the body.
Bear in mind that it can be somewhat difficult for your medical team to know the true extent of your tumour without surgery. âClinical stagingâ describes the extent of tumour determined by the ureteroscopic biopsy and the CT or MRI scan. âPathological stagingâ may be different, as it is determined by laboratory analysis after surgical removal of the tumour and surrounding tissue.
The pathology report following your ureteroscopy will generally confirm the diagnosis of urothelial cancer and show whether your tumour is âhigh gradeâ or âlow grade.â
Keep a copy of the pathology report, which will confirm the diagnosis and tell you the grade of the tumour. The pathology report will not tell you where else the cancer is or may be.
Print this page →
There are three options for treating UTUCs: surgery, chemotherapy and radiation. Which treatment, or combination of treatments, you and your doctor choose will be based on several factors, such as the grade and stage of the tumour, your age, overall health and medical history.
Surgery is the most common option for treating UTUC. There are three types of surgery for UTUC:
Chemotherapy uses drugs to kill cancer cells. It can be used for treatment of UTUC in two ways:
Intravenous chemotherapy can be associated with various side effects. Your care team will review all of the risks with you before starting treatment and will consider your cancer history and past medical history when deciding on the best choice for you.
Treatment of metastatic UTUC is mostly the same as treatment of metastatic bladder cancer. This can involve chemotherapy, immunotherapy, and newer targeted therapies.
Radiotherapy is rarely used for UTUC. The role of targeted (âstereotacticâ) radiotherapy is being studied and may play a more important role in the future.
Diagnosis and treatment of UTUC can be challenging. It is vital that you ask for support and maintain a healthy lifestyle.
Regular exercise is important and recommended at every stage of your treatment. It reduces cancer and treatment-related fatigue and improves quality of life.
To manage side effects from treatment it is also essential that you eat well during your treatment. Try to limit alcoholic drinks processed foods and increase your intake of plant-based foods including fruits, vegetables and legumes.
Print this page →
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.
Print this page →
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.
Print this page →
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.
Contact us:
Bladder Cancer Canada
4936 Yonge St, Suite 1000 | Toronto, ON M2N 6S3
info@bladdercancercanada.org or call us at 1-866-674-8889
Follow Us:
Facebook: /BladderCancerCanada
Linkedin: /bladder-cancer-canada/
YouTube: /BladderCancerCA
Instagram: /bladdercancercanada/
Weâd like to thank those on our Medical Advisory Board who provided the content and review of this Guidebook.
The project manager and editor of the Patient Guidebook series is Stephen Wilson.
We are grateful to those who generously provided financial support to make 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
