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This site is the online home of the American Bladder Cancer Society (ABLCS) a 501(c)(3) non-profit organization.
What you will find here is a site created for and by Bladder Cancer (BLC) survivors and the people that care about them. It is a social networking site and informational portal for Bladder Cancer. A virtual community of survivors and caregivers giving and receiving support as well as sharing information.
Any community is only as strong as its citizens and this one will be no different.
By posting to the forum, blogging and being part of this site you become a bladder cancer advocate. When you write of your experiences and post questions you are helping others. One of the most valuable things we do for each other as survivors is to validate each other’s emotions and experiences. Knowing that others have and are walking the same path is very empowering to survivors and caregivers.
So from the American Bladder Cancer Society here are the keys to your new home. May it always offer shelter to those in need, and be filled with knowledge, caring and hope.
Our Mission Statement Read More Our Logo storyRead More When Caregivers were asked what they wish someone had told them when they were starting out these were the top five answers.
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Encourage your loved one to seek a second opinion at a major cancer center that deals with a high volume of bladder cancer. Read More
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Go to appointments with them carrying a list of questions and paper and pen to take notes.
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Don’t worry about knowing what to say many times all you have to do is listen.
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Take care of yourself! Having cancer makes your loved one the center of the action and often times the caregiver has to handle a heavy burden, stress, lack of sleep, worry and overwork can result. Try to make time for yourself, eat right, get enough sleep and exercising are very important.
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You are not alone. There are an estimated 1/2 million bladder cancer survivors in the USA alone and an untold number of caregivers. This bladder cancer community is free and open to all to share support and gather information.
Non Invasive sometimes referred to as Superficial Bladder Cancer is when the cancer cells are contained in the bladder lining and have not invaded the muscle of the bladder.
When asked what five things they wish they had been told about their non-invasive bladder cancer
(sometimes called superficial bladder cancer) at the beginning, these were the top five answers.
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Non-invasive bladder cancer has a very high survival rate.
Proper treatment and surveillance is the key to heading off progression or catching it while still treatable.
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Always get a second opinion from a major center that handles a high volume of bladder cancer.
Make a list of your questions before you go and take someone with you to take notes. Read More
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When I hear about stage and grade what does it mean? Read More
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What type of treatment do they use for non-invasive bladder cancer? Read More
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You are not alone. There are an estimated 1/2 million bladder cancer survivors in the USA alone
and 3/4 of them have non-invasive bladder cancer. This bladder cancer community is free and open to all
to share support and gather information.
Carcinoma in situ
From the National Cancer Institute’s Dictionary of Cancer terms
What is Carcinoma in situ, [KAR-si-NO-ma in SYE-too]
Cancer that involves only cells in the tissue in which it began and that has not spread to nearby tissues. Read More
From Cornell University
Carcinoma in situ, or CIS, is the presence of cancerous-appearing cells, proliferating in an abnormally high number, but are confined to the transitional epithelium. That is, they have not invaded into deeper tissue layers such as muscle, or even the fibrous layers separating the epithelium from the muscle. CIS represents a rather confusing stage in the development of bladder cancer. As described previously (see "What is cancer?"), cancer occurs when a tumor has the potential to invade into a different tissue layer. However, in the case of CIS, the cancerous condition has not yet penetrated beyond its normal position in the body. In general CIS tends to be a far more malignant process with greater metastatic potential than some large low grade tumors that have begun to invade through the bladder wall.
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From WebMD
CIS can develop alone or in association with papillary tumors. This type of cancer can be difficult to diagnose because patients may present only with irritative voiding symptoms, which is a common problem in a urology office. Patients usually have microscopic or gross hematuria and are often misdiagnosed with a bladder infection and are treated as such. Cystoscopy may reveal a characteristic red, velvety appearance that resembles an area of inflammation, although, at times, CIS is not visible. Diagnostic tests include a urine cytology test and/or one of several available bladder cancer markers. These tests are highly sensitive in detecting CIS. Bladder biopsies are needed to firmly establish a diagnosis.
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From the American Bladder Cancer Society
Stage 0 bladder cancer includes noninvasive papillary carcinoma (Ta) and flat noninvasive carcinoma (Tis). This early stage of bladder cancer is most often treated with transurethral resection (TUR). This may be followed by intravesical therapy.
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Intravesical Therapy Intravesical therapy is a treatment that is put directly into the bladder (through a catheter) rather than being given by mouth or injected into a veinRead More From emedicine of webMD Read More
"Urothelial tumors of the renal pelvis and ureters (upper urinary tract) are relatively rare. Tumors of the renal pelvis account for approximately 10% of all renal tumors and approximately 5% of all urothelial tumors. Urethral tumors are even more uncommon, occurring with one quarter the frequency of renal pelvis tumors. Transitional (TCC) accounts for more than 90% of urothelial tumors of the upper urinary tract."
Renal pelvis
The renal pelvis is the portion of the urinary collecting system formed by the confluence of 2 or 3 major calices.
Ureter
The ureter is a 20- to 30-cm tubular structure lying on the psoas muscle. It follows an S-shaped curve, passing medially to the sacroiliac joint and then coursing laterally near the ischial spine before passing medially to penetrate the base of the bladder. It passes through a submucosal tunnel to empty into the bladder.
Histology
The renal pelvis and ureter are lined by a transitional epithelium. The next layer is the lamina propria. External to the lamina propria is smooth muscle arranged in a spiral and longitudinal manner. The outermost adventitia is composed of fibrous connective tissue.
From the National Cancer Institute Read More
From Medical News Today Read More
Bladder Cancer is considered to be invasive if cancer cells have gone through the bladders lining and are present in the muscle.
When asked what five things they wish they had been told about their invasive bladder cancer
at the beginning, these were the top five answers.
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Always get a second opinion from a major center that deals with a high volume of bladder cancer. Studies have shown that the experience of the Urological Surgeon, Oncologist and Pathologists can make a difference in outcomes. Read More
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What are the treatments for invasive bladder cancer? Read More
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What does stage and grade mean? Read More
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When you go to your doctor take along a list of your questions and someone to take notes.
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You are not alone. There are an estimated 1/2 million bladder cancer survivors in the USA alone. This bladder cancer community is free and open to all allowing them to share support and gather information.
Metastatic bladder cancer
From the American Cancer Society
What Is Metastatic Cancer? Local, Regional, and Distant (Metastatic) Spread of Cancer
Metastatic cancer is a cancer that has spread from its primary site (the part of the body in which it developed) to other parts of the body. If cells break away from a cancerous tumor, they can travel to other areas of the body. There, they may settle and form "colony" tumors. In their new location, the cancer cells continue growing. The spread of a tumor to a new part of the body is called metastasis. It is important to understand the difference between metastasis and local spread, because they affect a patient's prognosis (the outlook for chances of survival) and treatment options in different ways. Local spread means that a growing cancer extends beyond the organ in which it developed, into nearby organs and tissues. For example, the cervix (lower part of the uterus or womb) is located in front of the rectum and behind the bladder. Very large cancers of the cervix may extend into the rectum or bladder. When cancer spreads, it is still named after the part of the body where it started. For example, if prostate cancer spreads to the bones, it is still called prostate cancer, and if breast cancer spreads to the lungs it is still breast cancer. Read More
From the University of Florida’s Shand Cancer Center
Overview Patients with stage IV bladder cancer have cancer that has extended through the bladder wall and invaded the pelvic and/or abdominal wall and/or has lymph node involvement and/or spread to distant sites. Stage IV bladder cancer is also referred to as "metastatic" bladder cancer.
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From Memorial Sloan-Kettering Cancer Center
First-line treatment for metastatic bladder cancer includes both standard chemotherapeutic regimens as well as novel drug regimens that are available to patients enrolled in clinical trials
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From the National Cancer Institute
Are new treatments for metastatic cancer being developed? Yes, many new cancer treatments are under study. To develop new treatments, the NCI sponsors clinical (research studies) with cancer patients in many hospitals, universities, medical schools, and cancer centers around the country. Clinical trials are a critical step in the improvement of treatment. Before any new treatment can be recommended for general use, doctors conduct studies to find out whether the treatment is both safe for patients and effective against the disease. The results of such studies have led to progress not only in the treatment of cancer, but in the detection, diagnosis and prevention of the disease as well. Patients interested in taking part in a clinical trial should talk with their doctor.
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Our Clinical Trial Page
Read More When dealing with a new diagnosis of bladder cancer your sexuality is probbly the last thing on your mind. But the truth is that the time to have the discussion with your treatment team about your sexuality is when you are making treatment decisions. Dedending on your treatment path there may be options and precautions you need to be aware of.
Questions you may wish to ask your medical team
For non invasive
Are there any sexual side effects to the treatment I will be having?
Should I take any precautions such as protected sex during treatment?
Should I take precautions not to become pregnant during any stage of my treatment?
If cancer related stress has a lasting effect on my libido should I seek counseling?
For Invasive
What are the possible affects of my treatment to my sexuality? What are my options as far as dealing with those side effects?
If a Radical Cystectomy is to be done would nerve-sparing surgery be possible? I you do not offer nerve-sparing surgery can you refer me to a surgeon who does a high volume of them?
How would surgery or chemmotherapy effect my fertility and are there any steps I may wish to take before hand? Could you refer me to a specialist in the field of cancer and fertility?
For woman chemotherapy or Radical Cystectomy can cause medically induced menopause. Ask if your treatment plan will cause this to happen and what you can expect as far as side effects. Also if you should see a Gynecologist who deals with menopause.
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From the American Cancer Society
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Types of bladder cancer
Bladder tumors are grouped into several types by how their cells look under a microscope. The type of bladder cancer you have can affect your treatment options. This is because different types can respond differently to treatments such as radiation and chemotherapy. The main types of cancers that affect the bladder are:
* transitional cell carcinoma (also called urothelial carcinoma)
* squamous cell carcinoma
* adenocarcinoma
* small cell
These same types of cancer can also grow in other places in the urinary tract, such as the lining of the, kidney (called the renal pelvis), the ureters, and the urethra. In fact, patients with bladder cancer sometimes have a similar tumor in the lining of the kidneys, ureters, or urethra. Therefore, when someone is found to have a cancer in one part of their urinary system, the entire urinary tract needs to be checked for tumors.
From John Hopkins Pathology
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From Cornell University
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From the University of Texas M.D. Anderson Cancer Center
Read More When diagnosed one of the questions that need answering is what stage and grade is my bladder cancer?
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Wiktionary’s definition of a Pathologist is Pathologist (plural pathologists) “An expert in pathology; a specialist who examines samples of body tissues for diagnostic purpose.”
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The pathology report is very important as it will help your doctors know what your appropriate treatment path is.
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A pathology report is written in very technical language because of this it is a good idea to ask for a copy of your report and to have your doctor go over it with you.
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Stage tells how far into the bladder lining the bladder cancer has grown.
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Grade tells how different the cancer cells look from normal cells.
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What does stage and grade mean? Read More
Please click below for a list of cancer related resources.Read More There are clinical trials for all stages of bladder cancer be it invasive, non-invasive or metastatic. Your doctor may talk to you about clinical trials going on within their institution or you may look for one yourself. Whatever the case make sure you do your homework, know what the benefit is for you and if it has better potential to help you than standard treatment. What follows are links to information to help you educate yourself about clinical trials as well as matching services that can help you find a clinical trial that you might be eligible for.
Read More
Adenocarcinoma -- A malignant tumor which arises from types of glandular tissue.
It is rarely found as a primary bladder cancer
BCG -- Bacillus Calmette-Guerin -- a modified version of a tuberculosis vaccine which
is used as immunotherapy for some non-invasive (superficial) bladder cancers
Chemotherapy – Treatment of cancer with a drug, or combination of drugs, which target
cancer cells by interfering with cell division and growth
CIS -- Carcinoma in situ (flat tumor) -- A non-invasive but high grade form of bladder cancer
Clinical Trials -- Tests using patients to determine the safety and efficacy of a treatment modality
CT --Computerized tomography, an imaging technique for visualizing tumors
Cystectomy -- Surgical removal of the bladder
Cystoprostatectomy -- Surgical removal of the bladder and prostate
Cystoscopy -- A procedure in which a lighted instrumentcalled a cystoscope, is inserted into the bladder
FISH == fluorescence in situ hybridization (FISH) is a test to detect cytogenetic abnormalities in malignant cells in a urine specimen
Fulgration -- Destroying a tumor using an electric current
Grade – An assessment of how abnormal the cancer cells appear microscopically, and how likely the tumor is to grow and spread
HMO – Health Maintenance Organization. one type of medical insurance coverage
Immunotherapy – Treatment with an agent which stimulates the body’s immune system
Interferon Naturally occurring substances that may help slow tumor growth
Intravesical therapy – A type of treatment (immunotherapy or chemotherapy where the drug is placed directly into the bladder
Invasive Bladder Cancer -- cancer -- Cancer that has spread from the lining of the bladder
to the underlying muscle wall or has spread to nearby areas and lymph nodes
IVP -- Intravenous pyelogram--test for checking the kidneys and ureters for the presence
of cancer
Mitomycin C -- An anti-cancer drug often used during bladder biopsy procedures (see TURBT) to prevent seeding of cancer cells. Also used intravesically to treat superficial (non-invasive) bladder cancer
MRI – Magnetic Resonance Imaging, an imaging technique for visualizing parts of the body
NCI -- The National Cancer Institute, a part of the National Institutes of Health (NIH)
Non-invasive Bladder Cancer -- Cancer which is confined to the bladder wall
Oncology -- The area of medical specialization that deals with treatment of cancer
Papillary Carcinoma of the Bladder--A type of non-invasive transitional cell cancer
which grows outward, rather like a mushroom on a stalk
Pathologist -- A physician who identifies diseases by studying cells and tissues
PET -- Positron Emission Tomography, a non-invasive scanning technique for imaging, used to detect cancer spread. Typically done in conjunction with a CT and images are overlayed
Photodynamic Therapy – Treatment of cancer with drugs that are activated by exposure
to light
Radiation Therapy -- Treatment of a cancer by exposure to a radioactive substance
RC -- Radical cystectomy (surgical removal of the bladder and prostate in men, bladder and reproductive organs in women)
RESECTION -- Surgically removing tissue
RCC -- Renal cell carcinoma--kidney (also called renal pelvis) cancer
SCC -- Small cell carcinoma; squamous cell carcinoma--both rare forms of bladder cancer
Squamous cells -- A type of cancer cell with a flat, scale-like appearance
Stage -- Describes the extent of a cancer, including whether or not it has spread from its
original site to another part of the body
Staging system -- (TNM) -- T represents tumor size; N represents the number
of lymph nodes involved, if any; M represents the presence of metastases, if any
Superficial (or Non-invasive) Bladder Cancer -- Cancer that is confined to the
bladder surface
TCC -- Transitional cell carcinoma--most common form of bladder cancer
Transitional cells -- Cells forming a part of the bladder wall
TUR -- Transurethral resection--minimally invasive surgery performed via the urethra
TURBT -- Transurethral resection bladder tumor
TURB -- Transurethral resection bladder
Urine cytology -- Test of cells in the urine to detect the presence of cancer cells
Ureter -- One of two tubes that carry urine from the kidneys to the bladder
Urethra -- A tube which carries urine from the bladder to exit the body
Urology -- The area of medical specialization that deals with the urinary tract
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