Ask Your Doctor For Suggestions
Your physician or healthcare team can be a good source of information on the type of support available to you in your area. They should be able to introduce you to specialized bladder cancer resources, including support groups.
Other expert healthcare providers such as psychologists, dietitians, counselors, home health service technicians, or other specialists like oncology nurse navigators or social workers you come into contact with may also have a wealth of knowledge gained from helping other patients in similar circumstances, and may know of more specialized support available. Itâs always worth asking if they can help connect you with a support group.
American Association For Cancer Research
The AACR is the oldest and largest scientific organization in the world focused on every aspect of high-quality, innovative cancer research. The mission of the AACR is to prevent and cure cancer through research, education, communication, and collaboration.215.440.9300 or toll free 866.423.3965
Bladder Cancer Virtual Support Group
The Bladder Cancer Support Group provides mutual support and information for bladder cancer patients and their families. The group is facilitated by licensed clinical social workers and oncology nurses. Discussion is focused on current issues faced by bladder cancer patients and their support network. The support group will be conducted via Zoom. Instructions to join the support group will be emailed to you once you have registered. Other questions can be emailed to or call 949-764-6857
Virtual Support Group Acknowledgement
I understand that my participation in the virtual group does not establish a care treatment relationship and that everyone attending the virtual group may be able to see and hear each participant.
I understand I have the right to withdraw my consent to participate in a community education virtual group setting and to exit the virtual group at any time.
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Attend Fundraising And Other Events
Many national cancer organizations and charities offer support and education to people with bladder cancer and their families. These organizations often have connections to formal bladder cancer support groups that will allow you to connect with other individuals in treatment.
Or if a patient support group is not for you, you can also feel part of the community by supporting these organizations in other ways. Through fundraising for cancer research, or attending educational seminars and awareness functions, for example.
Getting involved in events related to bladder cancer in this way can be an excellent way to increase interaction and action, while also giving you a sense of belonging.
If you found this post useful, we invite you to browse our blog for more articles written for cancer patients.
How Can Cancer Support Groups Help
When you are diagnosed with cancer, you may experience shock, anger, or disbelief. You may feel intense sadness, fear, and a sense of loss. Even the most supportive family members and friends cannot understand exactly how it feels unless they have received a cancer diagnosis themselves. This may cause you to feel lonely, misunderstood, or isolated.
Finding a support group is a way for you to interact with other people who have similar, first-hand experiences with cancer. You can talk to them about their experiences and share your own. This can help reduce stress. In a cancer support group, members can feel more comfortable sharing feelings and experiences that may be too difficult or too awkward to share with their family and friends. Being part of a group often creates a sense of belonging that helps each person feel more understood and less alone.
You can also discuss practical information in a support group. This may include what to expect during treatment, how to manage specific side effects, how to find support services, and how to communicate with health care providers and family members. Talking about these topics within the support group could provide a sense of control and reduce feelings of helplessness as you cope with cancer.
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Organising An Annual Bladder Cancer Walk In Canada
Each year at Bladder Cancer Canada we organise a country-wide awareness raising walk for bladder cancer.
Awareness walks are widely adopted by patient charities and they serve to bring people associated with the particular disease together to encourage walkers to raise funds by collecting donations from family, friends and colleagues and to raise awareness about the disease through media publicity about the walk and presence of walkers in the streets and parks.
Read the full story in the start-up guide
Meeting The Aya Community’s Needs
The National Comprehensive Cancer Network has been striving to assist professionals in meeting the needs of AYA patients as it has been proven they have unique medical and psychosocial needs. It likely will become more common to see AYA-specific support groups being offered in more locations going forward due to the current trends.2
Social needs for this age group are generally higher and therefore the needs must be met. Support groups, even if done virtually, offer a way for this to happen. The support groups for this age group are also generally focused more on socializing and doing physical activities together, whether they be going to a sporting event, bowling, dinner, or working on a craft project together. The support comes from the camaraderie, not as much from the analytical aspect that is sometimes focused on in some other support groups.3
What Is Maintenance Therapy For Bladder Cancer
Ruby, your virtual community navigator, will help you understand what maintenance therapy is and how it can be used to treat bladder cancer.
Your treatment will be based on whether you have non-muscle invasive or muscle-invasive bladder cancer.
If you have bladder cancer, your urologist will perform a surgical procedure called a transurethral resection of bladder tumor . This is the most common way to remove early-stage tumors. For the procedure:
- You will be given anesthesia.
- Your urologist will insert a scope through the urethra into the bladder. This part is very similar to a cystoscopy.
- Your urologist will remove any abnormal looking tissue using the scopes wire loop.
- A pathologist will look at this tissue under a microscope to learn more about the abnormal tissue.
Having to go for repeat testing or needing repeat surgeries can cause anxiety, sadness, depression, or frustration. These follow-up tests can also cause a great deal of stress. Follow-up cystoscopies may cause pain and discomfort, which can cause even more anxiety. Patients have nicknamed these feelings scanxiety.
Learning About Bladder Cancer
For many, it is quite normal to know very little about bladder cancer until it comes into your life. We understand that it can be quite overwhelming to receive stacks of information at once upon receiving a diagnosis, or to perform a google search trying to find the information that you need. Weve kept this in mind and have designed the information on this page to give you a brief overview of the relevant information that we believe everyone should know about the disease.
Whether it is for yourself, a family member or a friend, we hope that this information provides you with a better understanding of bladder cancer and gives you the confidence to navigate the disease. On this page you will find all the basics you need to know about bladder cancer, and guidance on where to find more information.
What is Bladder Cancer?
Symptoms & risk factors
Understanding the symptoms to look out for and the risk factors to reduce exposure to is essential.
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Brain Tumor Support Group
The UCSF Brain Tumor Support Group is provided for patients, family members and caregivers to share experiences and concerns, and to learn from each other.
Location: Online. Please contact us for information and availability.Meetings: First Wednesday of the month, 6 8 p.m.Contact: 990-4461 or 661-1442
Regional West Health Services
Bladder cancer is the most common malignancy involving the urinary system. In the United States, there are estimated to be approximately 73,000 cases and 15,000 deaths each year due to bladder cancer.
Bladder cancer most commonly arises from the cells lining the inside of the bladder, called urothelial cells or transitional cells. Urothelial carcinoma is the predominant histologic type in the United States and Europe, where it accounts for 90 percent of all bladder cancers. In other areas of the world, non-urothelial carcinomas are more frequent. Much less commonly, urothelial cancers can arise in the renal pelvis, ureter, or urethra.
Living With Bladder CancerMany bladder cancer patients do not die of their disease but do experience multiple recurrences. As a consequence, there are a relatively large number of people alive with a history of bladder cancer. In middle-aged and elderly men, bladder cancer is the second most prevalent malignancy after prostate cancer.
Online Bladder Cancer Resources:
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Supporting You On Your Journey To Start A Bladder Cancer Patient Group
Our vision is that there is a national bladder cancer patient organisation in each country. It is an ambitious plan and it is people like you who can help make that happen! This toolkit is here to guide you with the first steps.
We want to make sure that national bladder cancer patient support groups and organisations are strong enough to support people affected by bladder cancer, enhance awareness and advocate for better diagnosis, access and care. We are here to provide guidance, support and a helping hand to aid your work in your country to make a difference.
We have gathered inspiration case studies from our member organisations to showcase the work that they have done around the world. We hope this will help to stimulate ideas about the kind of activities you can organise.
Bladder Cancer Resources For Warriors Under 40
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When I was diagnosed in 2016, there were very few bladder cancer resources online, especially for someone as young as I was. Virtual meetings were not really yet a thing.
Facebook groups were abundant, but the information was not always reliable there. They worked for support, but most of the active participants were much older…and male.
I had found some general cancer resources online for the adolescent and young adult crowd. Yet, I hesitated as the sites listed that “AYA” was defined as ages 15-39. I was nearly 41 at the time. So I contributed to the organizations by purchasing some gear but didn’t really pay much attention to anything else, thinking I’d be unwelcome.
BOY! Was I ever wrong!
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All Cancer All Stages
The UCSF All Cancer Support Group is a free weekly gathering open to patients with cancer of any type and in any stage. Please contact us for more information and to register. Please note that this group is for patients only.
Location: Online. Please contact us for information and availability.Meetings: Wednesdays, 5:20 6:50 p.m. Contact:
Colorectal Cancer Support Group
The UCSF Colorectal Cancer Support Group is provided so that people living with various types of colorectal cancer may meet to share experiences, concerns and questions.
Location: Online. Please contact us for information and availability.Meetings: Second and fourth Monday of the month, 6 7:30 p.m. Contact: Vittorio Comelli, 476-0468 ext. 1 or
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Bladder Cancer Education And Support Group
The UCSF Bladder Cancer Education and Support Group is available so that patients with bladder cancer as well as their caregivers and family members may share experiences, educate one another and support each other.
Location: Online. Please contact us for information and availability.Meetings: First Thursday of the month, 5:30 7 p.mContact: 514-1707
Recent Conversations In The Bladder Cancer Forum
- lung cancerCancer that forms in tissues of the lung, usually in the cells lining air passages. The two main types are small cell lung cancer and non-small cell lung cancer. These types are diagnosed based on how the cells look under a microscope.
- A malignant neoplasm derived from the transitional epithelium of the urinary tract . It is frequently papillary.
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What Is A Support Group
Support groups might form a valuable part of your support system. A support system is a network of people you can rely on for help. For many bladder cancer patients, building a reliable support system can be essential in helping to manage emotional, practical, and psychological needs.
From navigating personal stresses to health and financial issues, support groups can provide valuable resources and emotional support which can help cancer patients and their caregivers cope before, during, and after treatment. Cancer support groups might be made up of patients, survivors, or other people who are going through or have been through similar experiences to yourself.
Bladder Cancer Advocacy Network
A resource that is devoted specifically to bladder cancer is the Bladder Cancer Advocacy Network . It is a national advocacy organization that is dedicated to bladder cancer research, advocacy, and providing support to bladder cancer patients. The organization also provides a directory of local in-person support groups for bladder cancer patients throughout the United States.
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Where Can I Find A Support Group
Support groups are one of the easiest and most widely available ways to get help.
One of the benefits of support groups is their variety of formats. Some meet in-person, while others meet online or even over the phone.
Finding a support group may be easier than you think. Start by asking your doctor or hospital for options near you. If you arent satisfied with these options, you can research online.
Getting connected with a local support group is a great way to meet others who are experiencing something similar. These groups usually occur once or twice a month. They involve people with the same diagnosis getting together at a local place to talk about whatever is on their minds.
Many national organizations also offer support and education to people with bladder cancer and their families. Here are some organizations in the United States or around the world that provide cancer support:
The Greenberg Bladder Cancer Institute Main Menu
Ongoing support can help patients and their families throughout the bladder cancer journey, whether the patient has been recently diagnosed, is undergoing treatment or is learning to adjust to life after cancer.
The following resources will help you get answers to your questions and connect to other people who have been affected by bladder cancer.
Many of these resources are provided courtesy of the Bladder Cancer Advocacy Network, a key partner of the Greenberg Bladder Cancer Institute. Based in Bethesda, Maryland, the network provides information and support to patients, while advocating for research funding and greater collaboration within the scientific community.
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Urostomy And Continent Diversion Patients Find Support And Education From Peers At Uoaa
May is Bladder Cancer Awareness Month. According to the American Cancer Society, this year more than 80,000 people are expected to be diagnosed and approximately 17,000 will die as a result of this disease.
Bladder cancer survivors are a major part of the ostomy community represented by United Ostomy Associations of America through support groups, educational resources, and national advocacy.
For those with this cancer who require their bladder to be removed, a urostomy or continent diversion may be necessary. A urostomy is a surgically created opening in the abdominal wall through which urine passes. A urostomy may be performed when the bladder is either not functioning or has to be removed. There are several different types of surgeries, but the most common are ileal conduit and colonic conduit.
Our new ostomy patient guide is available to all who need it and it is a great overview of what to expect. Our urostomy guide has even more in-depth information. If you have a medical question contact your doctor or nurse, in you have a quality of life question- UOAA likely has the answers.
Other surgical options after bladder removal may not require an external pouching system such a continent pouch, or orthotopic neobladder. Continent diversion surgery needs lifestyle consultation and thought before being seriously considered since these surgeries are extensive and have possible complications including incontinence.
Connect with a Community
The Alan B Slifka Foundation
Founded in 1965, the Alan B. Slifka Foundation is a private family foundation dedicated to the pursuit of inclusion, diversity, peace and healing. The Foundation seeks to combat cancer, especially childhood cancer, through the support of innovative biomedical research. Among the Foundations top priorities is funding research into less toxic, more effective and potentially curative therapies for a variety of cancers, but especially for connective tissue cancers, known as sarcomas, that disproportionately impact children and young adults. The Alan B. Slifka Foundation is particularly interested in supporting bench-to-bedside research that results in targeted therapies, and also research that enhances our understanding of the metastatic process. slifkafoundation.org
The EHE Foundations mission is to seek treatments and a cure for Epithelioid Hemangioendothelioma by increasing awareness, pursuing scientific research, advocating for and supporting EHE patients, and bridging information between researchers, providers and patients.906.280.6432 fightehe.org
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All Cancer Husbands And Significant Others
The UCSF All Cancer Support Group for Husbands and Partners is for men whose significant other has cancer. The group explores positive ways of coping, provides emotional support, and shares information on treatments, side effects, complementary therapies, financial concerns and insurance issues.
Location: Online. Please contact us for information and availability.Meetings: Second and fourth Tuesday of the month, 5:30 7 p.m. Contact: 514-6338
The Future Of Bladder Cancer Patient Advocacy
Bladder cancer patient advocacy, while not yet thriving, is certainly growing, both in numbers and maturity. In the ten years since 2005, longstanding voids for US, Canadian, UK, Italian, and Australian bladder cancer patient advocacy have been filled. However, the absence of bladder cancer advocacy in other parts of Europe, as well as in Africa, Asia, and the Middle East, leaves large disparities in public awareness of the disease, as well as essential information, support, and treatment options for bladder cancer patients globally. We hope that patient advocates and medical professionals in other countries will be encouraged to leverage the experiences of the groups that exist today and move to fill these gaps.
At the same time, researchers will need patientadvocates to partner with them as they design, develop, and deliver these clinical trials. But developing skilled patient research advocates will require training and on-the-job experience. Formal training programs like those available in the breast and other cancer communities can ensure a pipeline of qualified candidates is available to meet increased demand.
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