If you have been diagnosed with bladder cancer, you’re not alone – although it may feel like it right now.
Here are some resources to help you get started navigating your way along the bladder cancer journey and navigate your bladder cancer diagnosis.
You’ve already taken the first step if you are reading this and by seeking information about your bladder cancer diagnosis. The next step is to get some reliable information about what’s ahead and what’s to be expected. We suggest that, initially, you DO NOT start surfing the web. There’s way too much unreliable, inaccurate, confusing or highly technical information out there.
Start by downloading and reading one of our Patient Guidebooks. You can download and read these free resources to help you navigate your bladder cancer journey. Currently, these free Guidebooks are available:
These Guidebooks have been written by people just like you in language you can understand. While you may not know what type of cancer treatment you will have, you’ll be better prepared and more knowledgeable when you meet with your urologist.
Check back on these bladder cancer patient resources often, as new Guidebooks are frequently added to this selection.
If you have a family physician, they will refer you to a urologist after being diagnosed with bladder cancer. You will want a urologist specializing in bladder cancer and you may want to check their reputation and choose someone you trust and feel comfortable talking to. Also, you can get a second opinion if you are unsure of the treatment regime recommended. Bladder Cancer Canada’s One2One Peer Support Program can provide recommendations and help you explore your cancer treatment options. It is important to understand your choices and discuss them with loved ones to make informed decisions.
Meeting with your urologist can be intimidating and it’s easy to forget what you want to ask. We suggest writing down your questions to ask your doctor BEFORE your appointment. You can either take notes or even tape record the meeting. Better yet, take a family member or friend with you to listen and take notes – allowing you to focus on what you want to find out.
Reading the Patient Guidebooks first will give you a better understanding of things like stage, grade, and other things you may want to ask about. Here are some of the questions you may want to ask:
Keep Your Appointments – Never put off a doctor’s appointment or test, even if your check-ups are clear. If you are scheduled for tests or check-ups every three months, six months or every year, it is critical that you keep the appointments. Bladder cancer has a high rate of recurrence and it’s important to catch a tumour quickly so it can be treated.
Maintain a Healthy Lifestyle – Find out what you can do to improve your health and strengthen your immune system. This may include asking for a referral to a nutritionist or dietitian who can help you with your diet. A basic exercise routine is also a good idea. To help you live a healthy lifestyle, we are developing a Healthy Living Guidebook, coming soon.
Understand Your Results – When you have any tests or blood work done, be sure to get copies of the results and keep them in a safe place. Ask what the test results mean or research the terms and refer to the glossary on this website so you understand the terminology.
Join our free, moderated Discussion Forums and start sharing with other patients, family and caregivers. Ask questions about the steps ahead and hear from other patients’ experiences. Join our forum for support.
Our One2One Peer Support Volunteers offer understanding and help to patients and their caregivers. We do not offer medical advice, but our volunteers can speak from the perspective of someone who has “been there,” and we can help you to find answers to your questions or concerns. Just call 1-866-674-8889 to be matched with the Peer Support Volunteer best suited to help you. Or click here and fill out a Bladder Cancer Peer Support Request Form.
Support groups serve as welcoming and non-judgmental forums in which bladder cancer patients and caregivers can share their worries, challenges and questions with others who have had similar experiences. Bladder Cancer Canada is fortunate to have committed and compassionate volunteers facilitating groups in several Canadian communities.
If you don’t see a one listed below for your region, please contact us (info@bladdercancercanada.org) so we can connect you with an existing group. Alternatively, if you are interested in starting a group, please send an email as we are always looking for volunteers to start a new group.
Most importantly, remember that we are here to help you throughout your bladder cancer journey. Please feel free to contact us any time you have questions.
