Bladder cancer basics for Newbies
[My purpose for posting this discussion is to introduce a broad prospective to those of you who are new to BCan. While this post is not meant to define every aspect of BCan in detail, nor represent all that there is to know about the subject, it will give many of you good conceptual ideas about different aspects of BCan, and perhaps 'get you up to speed' a little more quickly, and may assist you in formulating questions and discussions with your physician. It seems to cover about 90% (est.) of what most of us are dealing with. It deals with early detection, diagnostics, staging, and basic survival rates, and basic information about treatment options. Certainly, there are many more, very detailed, offerings on the internet, which can explain in much better depth, many of the topics listed below. However, this post is a decent starting point for those of you who have not yet found other informational resources. Note: Click on the staging photos at bottom of this post to enlarge them--- Good luck!]*****************************"Can bladder cancer be found early?Bladder cancer can sometimes be found early. Finding it early improves your chances that it can be treated successfully.ScreeningScreening tests or exams are used to look for a disease in people who have no symptoms (and who have not had that disease before). No major professional organizations recommend routine screening of the general public for bladder cancer at this time. This is because no screening test has been shown to lower the risk of dying from bladder cancer in people who are at average risk.Some doctors may recommend bladder cancer screening for people at very high risk. This includes people who were previously diagnosed with bladder cancer or had certain birth defects of the bladder. People with a lot of work-related exposure to certain chemicals might also be screened.Tests that might be used to screen for bladder cancerhttps://www.inspire.com/groups/bladder-cancer-advocacy-network/discussion/create/#Screening tests for bladder cancer look for different substances or cancer cells in the urine.Urinalysis: One way to test for bladder cancer is to check for blood in the urine (called hematuria). This can be done during a urinalysis, which is a simple test to check for blood and other substances in the urine. This test is sometimes done as a routine part of a general health checkup.Blood in the urine is usually caused by benign (non-cancerous) conditions such as infections, but it also can be the first sign of bladder cancer. Large amounts of blood in the urine can be seen if the urine turns pink or red, but a urinalysis is needed to find small amounts.Urinalysis can help find some bladder cancers early, but it has not been shown to be useful as a routine screening test.Urine cytology: In this test, the doctor looks for bladder cancer by examining urine under a microscope for cancer cells. Urine cytology does find some cancers, but it is not reliable enough to make a good screening test.Urine tests for tumor markers: Several newer tests look for substances in the urine that might indicate bladder cancer:UroVysion™: This test looks for chromosome changes that are often seen in bladder cancer cells.BTA tests: These tests look for a substance called bladder tumor-associated antigen (BTA) in the urine.Immunocyt™: This test looks at cells in the urine for the presence of substances such as mucin and carcinoembryonic antigen (CEA), which are often found on cancer cells.NMP22 BladderChek®: This test looks for a protein called NMP22 in the urine, which is often found at higher levels in people who have bladder cancer.These tests might find some bladder cancers early, but they can miss some cancers as well. In other cases, the test result may be abnormal even in some people who do not have cancer. At this time the tests are used mainly to look for bladder cancer in people who already have signs or symptoms of cancer, or in patients who have had a bladder cancer removed to check for cancer recurrence. Further research is needed before they are proven useful as screening tests.Watching for possible symptoms of bladder cancerNo screening tests are recommended for people at average risk, but bladder cancer can often be found early because it causes blood in the urine or other urinary symptoms (see “Signs and symptoms of bladder cancer”). Many of these symptoms often have less serious causes, but it’s important to have them checked by a doctor right away so the cause can be found and treated, if needed. If the symptoms are caused by bladder cancer, finding it early offers the best chance for successful treatment.**************************Signs and symptoms of bladder cancerBladder cancer can often be found early because it causes blood in the urine or other urinary symptoms.Blood in the urineIn most cases, blood in the urine (called hematuria) is the first warning sign of bladder cancer. Sometimes, there is enough blood to change the color of the urine. Depending on the amount of blood, the urine may be orange, pink, or, less often, darker red. Sometimes, the color of the urine is normal but small amounts of blood are found when a urine test (urinalysis) is done because of other symptoms or as part of a general medical checkup.Blood may be present one day and absent the next, with the urine remaining clear for weeks or months. If a person has bladder cancer, blood eventually reappears. Usually, the early stages of bladder cancer cause bleeding but little or no pain or other symptoms.Blood in the urine does not always mean you have bladder cancer. More often it is caused by other things like an infection, benign (non-cancerous) tumors, stones in the kidney or bladder, or other benign kidney diseases. But it is important to have it checked by a doctor so the cause can be found.Changes in bladder habits or symptoms of irritationBladder cancer can sometimes cause changes in urination, such as:Having to urinate more often than usualPain or burning during urinationFeeling as if you need to go right away, even when the bladder is not fullThese symptoms are also more likely to be caused by a benign condition such as infection, bladder stones, an overactive bladder, or an enlarged prostate (in men). Still, it is important to have them checked by a doctor so that the cause can be found and treated, if needed.Symptoms of advanced bladder cancerBladder cancers that have grown large enough or have spread to other parts of the body can sometimes cause other symptoms, such as:Being unable to urinateLower back pain on one sideLoss of appetite and weight lossSwelling in the feetBone painIf there is a reason to suspect you might have bladder cancer, the doctor will use one or more exams or tests to find out if it is cancer or something else.*****************************How is bladder cancer diagnosed?Bladder cancer is often found because of signs or symptoms a person is having, or it might be found because of lab tests a person is getting for another reason. If bladder cancer is suspected, exams and tests will be needed to confirm the diagnosis. If cancer is found, further tests will be done to help determine the extent (stage) of the cancer.Medical history and physical examIf you have any signs or symptoms that suggest you might have bladder cancer, your doctor will want to take a complete medical history to check for risk factors and to learn more about your symptoms.A physical exam provides other information about possible signs of bladder cancer and other health problems. The doctor might examine the rectum and vagina (in women) to feel for a bladder tumor, determine its size, and to see if and how far it has spread.If the results of the exam are abnormal, your doctor will probably do lab tests such as a urinalysis (see “Can bladder cancer be found early?”) and might refer you to a urologist (a doctor specializing in diseases of the urinary system and male reproductive system) for further tests and treatment.CystoscopyIf bladder cancer is suspected, doctors will recommend a cystoscopy. For this exam, a urologist places a cystoscope – a slender tube with a light and a lens or a small video camera on the end – through the opening of the urethra and advances it into the bladder. Sterile salt water is then injected through the scope to expand the bladder and allow the doctor to look at the inner lining of the bladder.Cystoscopy can be done in a doctor’s office or in an operating room. Usually the first cystoscopy will be done in the doctor’s office using a small, flexible fiber-optic device. Some sort of local anesthesia may be used to numb the urethra and bladder for the procedure. If the cystoscopy is done using general anesthesia (you are asleep) or spinal anesthesia (numbing the lower part of your body), the procedure is done in the operating room.If an abnormal area or a growth is seen, it will be biopsied. A thin instrument will be threaded through the cystoscope to remove a small piece of tissue, which is then sent to a lab and looked at under the microscope. Salt water washings of the inside the bladder may also be collected to look for cancer cells. (Read further for more about biopsies.)Fluorescence cystoscopy may be done along with routine cystoscopy. For this exam, drugs called porphyrins are put into the bladder during cystoscopy. They are taken up by cancer cells. When the doctor then shines a blue light through the cystoscope, any cells containing the porphyrins will glow (fluoresce). This can help the doctor see areas with cancer cells that might have been missed by the white light normally used.Lab testsUrine cytologyFor this test, a sample of urine is looked at under a microscope to see if it contains any cancer or pre-cancer cells. Cytology is also done on any bladder washings taken when the cystoscopy was done. Cytology can help find some cancers, but this test is not perfect. Not finding cancer on this test doesn’t always mean you are cancer free.Urine cultureIf you are having urinary symptoms, this test may be done to see if an infection (rather than cancer) is the cause. Infections and bladder cancers can cause similar symptoms. For a urine culture, a sample of urine is put into a dish in the lab to allow any bacteria that are present to grow. It can take time for the bacteria to grow, so it may take a few days to get the results of this test.Urine tumor marker testsDifferent urine tests look for specific substances released by bladder cancer cells. These tests may be used along with urine cytology to help determine if a person has bladder cancer. They include the tests for NMP22 and BTA, the Immunocyt test, and the UroVysion test (discussed in the section “Can bladder cancer be found early?”).Some doctors find these urine tests useful in looking for bladder cancers, but they may not help in all cases. Most doctors feel that cystoscopy is still the best way to find bladder cancer. Some of these tests are more helpful when looking for possible recurrence of bladder cancer in someone who has already had it, rather than finding it in the first place.BiopsyA biopsy is the removal of a small sample of body tissue to see if it is cancer. The tissue that is removed is sent to the lab, where it is looked at by a pathologist, a doctor who specializes in diagnosing diseases with lab tests. If bladder cancer is suspected, a biopsy is needed to confirm the diagnosis.Bladder biopsiesBladder biopsy samples are most often obtained during cystoscopy. A biopsy can show whether cancer is present and what type of bladder cancer it is. If bladder cancer is found, two important features are its invasiveness and grade.Invasiveness: The biopsy can show how deeply the cancer has invaded (grown into) the bladder wall, which is very important in deciding treatment. If the cancer stays in the inner layer of cells without growing into the deeper layers, it is called non-invasive. If the cancer grows into the deeper layers of the bladder, it is called invasive. Invasive cancers are more likely to spread and are harder to treat.You may also see a bladder cancer described as superficial or non-muscle invasive. These terms include both non-invasive tumors as well as any invasive tumors that have not grown into the main muscle layer of the bladder.Grade: Bladder cancers are also assigned a grade, based on how they look under the microscope.Low-grade cancers look more like normal bladder tissue. They are also called well-differentiated cancers. Patients with these cancers usually have a good prognosis (outlook).High-grade cancers look less like normal tissue. These cancers may also be called poorly differentiated or undifferentiated. High-grade cancers are more likely to grow into the bladder wall and to spread outside the bladder. These cancers can be harder to treat.People with bladder cancer may develop more cancers in other areas of the bladder or in the urinary system. For this reason, during the biopsy the doctor may take tissue samples from several different areas of the bladder lining.Biopsies to look for cancer spreadIf imaging tests (see the next section) suggest the cancer might have spread outside of the bladder, a biopsy is the only way to be sure. In some cases, biopsy samples of suspicious areas are obtained during surgery to remove the bladder cancer.Another way to get a biopsy sample is to use a thin, hollow needle to take a small piece of tissue from the abnormal area. This is known as a needle biopsy, and by using it the doctor can take samples without an operation. Needle biopsies are sometimes done using a CT scan or ultrasound to help guide the biopsy needle into the abnormal area.Imaging testsImaging tests use x-rays, magnetic fields, sound waves, or radioactive substances to create pictures of the inside of your body. If you have bladder cancer, your doctor may order some of these tests to see if the cancer has spread to tissues near the bladder, nearby lymph nodes, or to distant organs. If an imaging test shows enlarged lymph nodes or other possible signs of cancer spread, some type of biopsy might be needed to confirm the findings.Intravenous pyelogramAn intravenous pyelogram (IVP), also called an intravenous urogram (IVU), is an x-ray of the urinary system taken after injecting a special dye into a vein. This dye is removed from the bloodstream by the kidneys and then passes into the ureters and bladder. The dye outlines these organs on x-rays and helps find show urinary tract tumors.Some people have allergic reactions to the dye, so it’s important to tell your doctor if you have any allergies or have ever had any reactions to x-ray dyes.Retrograde pyelogramFor this test, a catheter (thin tube) is placed through the urethra and up into the bladder or into a ureter. Then a dye is injected through the catheter to make the lining of the bladder, ureters, and kidneys easier to see on x-rays.This test isn’t used as often as IVP, but it may be done (along with ultrasound of the kidneys) to look for tumors in the urinary tract in people who can’t have an IVP because they are allergic to x-ray dyes.Computed tomography (CT) scanThe CT scan uses x-rays to produce detailed cross-sectional images of your body. A CT scan of the kidney, ureters, and bladder is known as a CT urogram. It can provide detailed information about the size, shape, and position of any tumors in the urinary tract, including the bladder. It may be used instead of an IVP to look at the upper part of the urinary system. It can also help show enlarged lymph nodes that might contain cancer, as well as other organs in the abdomen and pelvis.Instead of taking one picture, like a standard x-ray, a CT scanner takes many pictures as it rotates around you. A computer then combines these pictures into an image of a slice of your body.A CT scanner has been described as a large donut, with a narrow table that slides in and out of the middle opening. You will need to lie still on the table while the scan is being done. CT scans take longer than regular x-rays, and you might feel a bit confined by the ring while the pictures are being taken.Before the test, you might be asked to drink 1 to 2 pints of a liquid called oral contrast. This helps outline the intestine so that certain areas are not mistaken for tumors. You might also receive an IV line through which a different kind of contrast dye (IV contrast) is injected. This helps better outline structures such as blood vessels in your body.The injection can cause some flushing (redness and warm feeling). A few people are allergic to the dye and get hives or, rarely, have more serious reactions like trouble breathing and low blood pressure. Be sure to tell the doctor if you have any allergies or have ever had a reaction to any contrast material used for x-rays.CT-guided needle biopsy: CT scans can also be used to guide a biopsy needle into a suspected tumor. This is not used to biopsy tumors within the bladder, but it can be used to take tissue samples from areas where the cancer may have spread. For this procedure, you remain on the CT scanning table while the doctor advances a biopsy needle through the skin and toward the tumor. CT scans are repeated until the needle is within the mass. A needle biopsy sample is then removed to be looked at under a microscope.Magnetic resonance imaging (MRI) scanLike CT scans, MRI scans provide detailed images of soft tissues in the body. But MRI scans use radio waves and strong magnets instead of x-rays. The energy from the radio waves is absorbed and then released in a pattern formed by the type of body tissue and by certain diseases. A computer translates the pattern into very detailed images of parts of the body. A contrast material called gadolinium is often injected into a vein before the scan to see details more clearly.MRI scans take longer than CT scans – often up to an hour – and are a little more uncomfortable. You may be placed on a table that slides inside a narrow tube, which is confining and can upset people with a fear of enclosed spaces. Newer, open MRI machines can sometimes be used instead. The MRI machine also makes buzzing and clicking noises that you may find disturbing. Some places will provide earplugs to help block these noises out.MRI images are particularly useful in finding signs that the cancer has spread outside of the bladder into nearby tissues or lymph nodes. A special MRI of the kidneys, ureters, and bladder, known as an MRI urogram, can be used instead of an IVP to look at the upper part of the urinary system.UltrasoundUltrasound (ultrasonography) uses sound waves to create pictures of internal organs. It can be useful in determining the size of a bladder cancer and whether it has spread beyond the bladder to nearby organs or tissues. It can also be used to look at the kidneys.This is an easy test to have. It uses no radiation, which is why it is often used to look at developing fetuses. For the exam, you simply lie on a table while a transducer (which is shaped like a wand) is placed on the skin over the part of your body being looked at. Usually, the skin is first lubricated with gel. The transducer gives off sound waves and picks up the echoes as they bounce off organs in the body. The echoes are converted by a computer into a black-and-white image.Ultrasound-guided needle biopsy: Ultrasound can also be used to guide a biopsy needle into a suspected area of cancer spread in the abdomen or pelvis.Chest x-rayA chest x-ray may be done to look for spread of bladder cancer to the lungs. This test is not needed if a CT scan of the chest has been done.Bone scanA bone scan can help look for cancer that has spread to bones. Doctors don’t usually order this test unless you have symptoms such as bone pain, or if blood tests show the cancer might have spread to your bones.For this test, a small amount of low-level radioactive material is injected into a vein (intravenously, or IV). The substance settles in areas of damaged bone throughout the entire skeleton over the course of a couple of hours. You then lie on a table for about 30 minutes while a special camera detects the radioactivity and creates a picture of the skeleton. The picture is not detailed like an MRI or CT scan, but it shows possible areas of cancer spread to all of the bones in the body at once.Areas of active bone changes attract the radioactivity and appear as “hot spots” on the skeleton. These areas may suggest the presence of cancer, but other bone diseases can also cause the same pattern. To distinguish among these conditions, other imaging tests such as plain x-rays, MRI scans, or even a bone biopsy might be needed.*************************How is bladder cancer staged?The stage of a bladder cancer is a standard summary of how far the cancer has spread. It is one of the most important factors in choosing treatment options and predicting a person’s prognosis (outlook). If you have bladder cancer, ask your cancer care team to explain its stage. This can help you make informed choices about your treatment.There are actually 2 types of stages for bladder cancer.The clinical stage is the doctor’s best estimate of the extent of the cancer, based on the results of physical exams, cystoscopy, biopsies, and any imaging tests that are done (such as CT scans). These exams and tests are described in the section “How is bladder cancer diagnosed?” Doctors looking at biopsy samples are especially interested in whether any cancer cells have spread into the bladder’s muscle layers.If surgery is done, the pathologic stage can be determined using the same factors as the clinical stage, plus what is found during surgery to remove the bladder and nearby lymph nodes.The clinical stage is used to help plan treatment. Sometimes, though, the cancer has spread further than the clinical stage estimates. Pathologic staging is likely to be more accurate, because it gives your doctor a firsthand impression of the extent of your disease.AJCC TNM staging system for bladder cancerA staging system is a standard way for members of the cancer care team to describe the extent of cancer spread. The staging system most often used for bladder cancer is that of the American Joint Committee on Cancer (AJCC). This is also called the TNM system.The TNM staging system is based on 3 key pieces of information:T describes how far the main (primary) tumor has grown through the bladder wall and whether it has grown into nearby tissues.N indicates any cancer spread to lymph nodes near the bladder. Lymph nodes are bean-sized collections of immune system cells, to which cancers often spread first.M indicates whether or not the cancer has spread (metastasized) to distant sites, such as other organs or lymph nodes that are not near the bladder. T categories for bladder cancer [see photos at end of this post for bladder tissue components]The T category describes the main tumor. (See “What is bladder cancer?” for a description of papillary and flat carcinomas and the different layers of the bladder.)TX: Main tumor cannot be assessed due to lack of informationT0: No evidence of a primary tumorTa: Non-invasive papillary carcinomaTis: Non-invasive flat carcinoma (flat carcinoma in situ, or CIS)T1: The tumor has grown from the layer of cells lining the bladder into the connective tissue below. It has not grown into the muscle layer of the bladder.T2: The tumor has grown into the muscle layer.T2a: The tumor has grown only into the inner half of the muscle layer.T2b: The tumor has grown into the outer half of the muscle layer.T3: The tumor has grown through the muscle layer of the bladder and into the fatty tissue layer that surrounds it.T3a: The spread to fatty tissue can only be seen by using a microscope.T3b: The spread to fatty tissue is large enough to be seen on imaging tests or to be seen or felt by the surgeon.T4: The tumor has spread beyond the fatty tissue and into nearby organs or structures. It may be growing into any of the following: the stroma (main tissue) of the prostate, the seminal vesicles, uterus, vagina, pelvic wall, or abdominal wall.T4a: The tumor has spread to the stroma of the prostate (in men), or to the uterus and/or vagina (in women).T4b: The tumor has spread to the pelvic wall or the abdominal wall.Bladder cancer can sometimes affect many areas of the bladder at the same time. If more than one tumor is found, the letter m is added to the appropriate T category.N categories for bladder cancerThe N category describes spread only to the lymph nodes near the bladder (in the true pelvis) and those along the blood vessel called the common iliac artery. These lymph nodes are called regional lymph nodes. Any other lymph nodes are considered distant lymph nodes. Spread to distant nodes is considered metastasis (described in the M category). Surgery is usually needed to find cancer spread to lymph nodes, since it is not often seen on imaging tests.NX: Regional lymph nodes cannot be assessed due to lack of information.N0: There is no regional lymph node spread.N1: The cancer has spread to a single lymph node in the true pelvis.N2: The cancer has spread to 2 or more lymph nodes in the true pelvis.N3: The cancer has spread to lymph nodes along the common iliac artery.M categories for bladder cancerM0: There are no signs of distant spread.M1: The cancer has spread to distant parts of the body. (The most common sites are distant lymph nodes, the bones, the lungs, and the liver).Stages of bladder cancerOnce the T, N, and M categories have been determined, this information is combined to find the overall cancer stage. Bladder cancer stages are defined using 0 and the Roman numerals I to IV (1 to 4). Stage 0 is the earliest stage, while stage IV is the most advanced.Stage 0a (Ta, N0, M0)The cancer is a non-invasive papillary carcinoma (Ta). It has grown toward the hollow center of the bladder but has not grown into the connective tissue or muscle of the bladder wall. It has not spread to lymph nodes (N0) or distant sites (M0).Stage 0is (Tis, N0, M0)The cancer is a flat, non-invasive carcinoma (Tis), also known as flat carcinoma in situ (CIS). The cancer is growing in the inner lining layer of the bladder only. It has neither grown inward toward the hollow part of the bladder nor has it invaded the connective tissue or muscle of the bladder wall. It has not spread to lymph nodes (N0) or distant sites (M0).Stage I (T1, N0, M0)The cancer has grown into the layer of connective tissue under the lining layer of the bladder but has not reached the layer of muscle in the bladder wall (T1). The cancer has not spread to lymph nodes (N0) or to distant sites (M0).Stage II (T2a or T2b, N0, M0)The cancer has grown into the thick muscle layer of the bladder wall, but it has not passed completely through the muscle to reach the layer of fatty tissue that surrounds the bladder (T2). The cancer has not spread to lymph nodes (N0) or to distant sites (M0).Stage III (T3a, T3b, or T4a, N0, M0)The cancer has grown into the layer of fatty tissue that surrounds the bladder (T3a or T3b). It might have spread into the prostate, uterus, or vagina, but it is not growing into the pelvic or abdominal wall (T4a). The cancer has not spread to lymph nodes (N0) or to distant sites (M0).Stage IVOne of the following applies:T4b, N0, M0: The cancer has grown through the bladder wall and into the pelvic or abdominal wall (T4b). The cancer has not spread to lymph nodes (N0) or to distant sites (M0).ORAny T, N1 to N3, M0: The cancer has spread to nearby lymph nodes (N1-N3) but not to distant sites (M0).ORAny T, any N, M1: The cancer has spread to distant lymph nodes or to sites such as the bones, liver, or lungs (M1).**************************Survival rates for bladder cancer by stageSurvival rates are often used by doctors as a standard way of discussing a person’s prognosis (outlook). Some people with cancer may want to know the survival statistics for people in similar situations, while others may not find the numbers helpful, or may even not want to know them. If you would rather not read the survival rates for bladder cancer, skip to the next section.The 5-year survival rate refers to the percentage of patients who live at least 5 years after their cancer is diagnosed. Of course, many people live much longer than 5 years (and many are cured).Five-year relative survival rates assume that some people will die of other causes and compare the observed survival with that expected for people without the cancer. This is a more accurate way to describe the chances of dying from a particular type and stage of cancer.In order to get 5-year survival rates, doctors have to look at people who were treated at least 5 years ago. Improvements in treatment since then may result in a better outlook for people now being diagnosed with bladder cancer.The numbers below are based on thousands of people diagnosed with bladder cancer from 1988 to 2001. These numbers come from the National Cancer Institute’s SEER database.Stage -- Relative 5-year Survival Rate0 -- 98%I -- 88%II -- 63%III -- 46%IV -- 15%Survival rates are often based on previous outcomes of large numbers of people who had the disease, but they can’t predict what will happen. Knowing the type and the stage of a person’s cancer is important in estimating their outlook. But many other factors can also affect a person’s outlook, such as other health problems, the grade of the cancer, and how well the cancer responds to treatment. Your doctor can tell you how the numbers above apply to you.***************************Treatment optionsThere are different types of treatment for patients with bladder cancer.Different types of treatment are available for patients with bladder cancer. Some treatments are standard (the currently used treatment), and some are being tested in clinical trials. A treatment clinical trial is a research study meant to help improve current treatments or obtain information on new treatments for patients with cancer. When clinical trials show that a new treatment is better than the standard treatment, the new treatment may become the standard treatment. Patients may want to think about taking part in a clinical trial. Some clinical trials are open only to patients who have not started treatment.Four types of standard treatment are used:SurgeryOne of the following types of surgery may be done:Transurethral resection (TUR) with fulguration: Surgery in which a cystoscope (a thin lighted tube) is inserted into the bladder through the urethra. A tool with a small wire loop on the end is then used to remove the cancer or to burn the tumor away with high-energy electricity. This is known as fulguration.Radical cystectomy: Surgery to remove the bladder and any lymph nodes and nearby organs that contain cancer. This surgery may be done when the bladder cancer invades the muscle wall, or when superficial cancer involves a large part of the bladder. In men, the nearby organs that are removed are the prostate and the seminal vesicles. In women, the uterus, the ovaries, and part of the vagina are removed. Sometimes, when the cancer has spread outside the bladder and cannot be completely removed, surgery to remove only the bladder may be done to reduce urinary symptoms caused by the cancer. When the bladder must be removed, the surgeon creates another way for urine to leave the body.Partial cystectomy: Surgery to remove part of the bladder. This surgery may be done for patients who have a low-grade tumor that has invaded the wall of the bladder but is limited to one area of the bladder. Because only a part of the bladder is removed, patients are able to urinate normally after recovering from this surgery. This is also called segmental cystectomy.Urinary diversion: Surgery to make a new way for the body to store and pass urine.Even if the doctor removes all the cancer that can be seen at the time of the surgery, some patients may be given chemotherapy after surgery to kill any cancer cells that are left. Treatment given after surgery, to lower the risk that the cancer will come back, is called adjuvant therapy.Radiation therapyRadiation therapy is a cancer treatment that uses high-energy x-rays or other types of radiation to kill cancer cells or keep them from growing. There are two types of radiation therapy. External radiation therapy uses a machine outside the body to send radiation toward the cancer. Internal radiation therapy uses a radioactive substance sealed in needles, seeds, wires, or catheters that are placed directly into or near the cancer. The way the radiation therapy is given depends on the type and stage of the cancer being treated.ChemotherapyChemotherapy is a cancer treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing. When chemotherapy is taken by mouth or injected into a vein or muscle, the drugs enter the bloodstream and can reach cancer cells throughout the body (systemic chemotherapy). When chemotherapy is placed directly into the cerebrospinal fluid, an organ, or a body cavity such as the abdomen, the drugs mainly affect cancer cells in those areas (regional chemotherapy). For bladder cancer, regional chemotherapy may be intravesical (put into the bladder through a tube inserted into the urethra). The way the chemotherapy is given depends on the type and stage of the cancer being treated. Combination chemotherapy is treatment using more than one anticancer drug.See Drugs Approved for Bladder Cancer for more information.Biologic therapyBiologic therapy is a treatment that uses the patient’s immune system to fight cancer. Substances made by the body or made in a laboratory are used to boost, direct, or restore the body’s natural defenses against cancer. This type of cancer treatment is also called biotherapy or immunotherapy.Bladder cancer may be treated with an intravesical biologic therapy called BCG (bacillus Calmette-Guérin). The BCG is given in a solution that is placed directly into the bladder using a catheter (thin tube).New types of treatment are being tested in clinical trials.Information about clinical trials is available from the NCI Web site.Patients may want to think about taking part in a clinical trial.For some patients, taking part in a clinical trial may be the best treatment choice. Clinical trials are part of the cancer research process. Clinical trials are done to find out if new cancer treatments are safe and effective or better than the standard treatment.Many of today's standard treatments for cancer are based on earlier clinical trials. Patients who take part in a clinical trial may receive the standard treatment or be among the first to receive a new treatment.Patients who take part in clinical trials also help improve the way cancer will be treated in the future. Even when clinical trials do not lead to effective new treatments, they often answer important questions and help move research forward.Patients can enter clinical trials before, during, or after starting their cancer treatment.Some clinical trials only include patients who have not yet received treatment. Other trials test treatments for patients whose cancer has not gotten better. There are also clinical trials that test new ways to stop cancer from recurring (coming back) or reduce the side effects of cancer treatment.Clinical trials are taking place in many parts of the country. See the Treatment Options section that follows for links to current treatment clinical trials. These have been retrieved from NCI's listing of clinical trials.Follow-up tests may be needed.Some of the tests that were done to diagnose the cancer or to find out the stage of the cancer may be repeated. Some tests will be repeated in order to see how well the treatment is working. Decisions about whether to continue, change, or stop treatment may be based on the results of these tests. This is sometimes called re-staging.Some of the tests will continue to be done from time to time after treatment has ended. The results of these tests can show if your condition has changed or if the cancer has recurred (come back). These tests are sometimes called follow-up tests or check-ups.Bladder cancer often recurs (comes back), even when the cancer is superficial. Surveillance of the urinary tract to check for recurrence is standard after a diagnosis of bladder cancer. Surveillance is closely watching a patient’s condition but not giving any treatment unless there are changes in test results that show the condition is getting worse. During active surveillance, certain exams and tests are done on a regular schedule. Surveillance may include ureteroscopy and imaging tests."
18 Comments - Posted Nov 02
Has anyone w/ Bladder Cancer been told it was from dying their hair w/ permanent color? No one I have spoken to had heard of it but my doctor thinks it caused my tumor. I also never had any noticeable blood in my urine, just lots of pain as far as symptoms went. Do any of you know about other causes for non-smokers?
21 Comments - Posted Jun 01
UTIs at diagnosis and BC outcomes
Renal & Urology News5/17/2015UTI Linked to Worse Bladder Cancer OutcomesNEW ORLEANS—Urinary tract infection (UTI) may predict higher stage bladder cancer and greater mortality among older patients, according to a research presented at the American Urological Association 2015 annual meeting.Additionally, UTI appears to delay the diagnosis of bladder cancer in both sexes, but more notably in women.For the study, investigators led by Kyle A. Richards, MD, of the University of Wisconsin School of Medicine and Public Health examined Medicare claims data linked to the Surveillance, Epidemiology, and End Results (SEER) cancer registry. They identified Medicare patients older than 66 years diagnosed with bladder cancer during 2007–2009, who presented initially with either hematuria or UTI. Researchers discovered that patients presenting with UTI were at the highest risk of adverse bladder cancer pathologic and oncologic outcomes compared to patients presenting with hematuria. The odds of stage 2 or higher disease was 71% higher in men and 208% higher in women presenting with UTI. Likewise, bladder cancer-specific mortality was higher in men (50%) and women (37%) presenting with UTI. The chance of dying from any cause was similarly elevated by 39% to 47%.When UTI claim was also considered as a presenting symptom in addition to hematuria, time to diagnosis of bladder cancer was longer in women vs. men (72 vs. 59 days). Time to diagnosis, however, was not linked to worse pathology or mortality. “Symptoms of UTI in older patients might be a harbinger of bladder cancer and should prompt thorough evaluation if symptoms persist despite short-term conservative management,” Dr. Richards told Renal & Urology News. “Timely bladder cancer diagnosis and treatment may not always occur due to prolonged treatment for presumed UTI.”According to the investigators, an alternate theory is that patients presenting with a true UTI might have different bladder tumor biology that leads to negative outcomes. Further studies may clarify the factors that lead to worse bladder cancer pathology and outcomes.
0 Comments - Posted May 20
My Story - Or - Why Some Urologists Suck.
Lucky for me, I’ve contracted a cancer I can afford. What if I offered you a cancer that could be surgically removed, but which also was likely to recur? You could be cancer-free after surgery, technically, but hanging over your head, for the rest of your days, would be another tumor, ever possible. A cancer without remission. No escape. You may live out your days without another tumor. Or you may keep requiring surgery to remove tumors. Someday one of them could be quite dangerous. Most tumors fall into one of two categories: Some which are inconvenient, low-grade mutations growing like evil broccoli into the bladder center, which cannot be left but which don’t necessarily threaten your life. And others which lie flat on the bladder wall, growing instead into the bladder itself. Left alone, these high-grade, flat tumors compromise the bladder quickly, seeking to escape and wreak havoc elsewhere. I have the former type - so far. 30% of people in my situation “graduate” and become a factory for high-grade tumors.A low-grade, non-muscle invasive urethelial carcinoma used to be called “superficial” because it rests on the bladder lining and is usually a localized threat. The grades of this cancer refer to how distorted the cells appear to the pathologist’s eye. Here, low-grade tumors are less likely to return or threaten anything other than the bladder lining. High-grade tumors are more chaotic in structure, and feature a high recurrence rate and threat to the underlying tissue, the muscle, the fat surrounding the bladder, and distant organs.I am the current owner of low-grade, non-muscle invasive bladder cancer. As fightbladdercancer.co.uk puts it: “Bladder cancer is ... the cancer that has the highest recurrence rate. This will mean that you are likely to have a lifetime relationship with investigations and treatments as your medical team works to remove the tumours and then works hard again to help prevent them coming back.”A lifetime relationship. You will always be just months away from your next cystoscopy. You will often study your urine stream, looking for blood.If you’re in public and there isn’t time to study,you glance, at least. Every time. If you have nocturia, an exotic term for waking up to pee overnight, you may not study or glance. You may continue back to your bed in the dark, not wishing to disturb your partner by illuminating the room. Then you lie wake wondering if you’ve left blood behind for her to find. Every release from your bladder may carry the evidence you ignored once, assuming a kidney stone was announcing itself. You were wrong then. You learn. So you glance. Not every tumor announces itself thus, but dread owns the mind and you reach for any illusion of control available.Due to the regular cystoscopies, the high recurrence rate, the immunotherapy and chemotherapy options, and a possible need for tumor removal surgery for life, bladder cancer carries the highest lifetime costs of all other cancers. If you live in a country where healthcare is a business and you have either insurance or money: you are now a revenue center, providing a reliable income stream for life. Well, yours. The cancer industry swings into action. You’re invited to join an online “Patient Portal” with convenient appointment scheduling, test results, and billing information. There is a saying in social media: if you’re not paying for the product, you are the product. In the U.S. healthcare system, both are true. Because I have employer-subsidized health care, the insurance company negotiates with the providers in plain view. My bill shows the “cash” value of my treatments, then the “discounts” provided as most of the costs are “disallowed” and finally most of the remainder covered by insurance. I am left with small bills, once I satisfy the annual deductible. I am admonished to seek help only “within the network,” and the costs of violating this guidance are included as helpful background on each bill. I am not invited to negotiate anything. For my first surgery, I receive a call from the hospital whose sole purpose is to tell me I needed to provide $500 upon arrival. I blink at this, realizing others balk. My experience:After an episode of gross hematuria, the second in a year, I finally went to a doctor. Hematuria refers to blood in the urine, and gross means it’s visible to the naked eye. My medical record reads: “Complaint: Hematuria. Diagnosis: Hematuria, Gross.”I found this hilarious and sent a picture of the record to my nurse daughter, saying I felt unfairly judged. “They’re not lying, Dad, it is gross.” That’s my girl. Not all my jokes work, however. I keep trying to explain my weight gain since learning of my diagnosis as due to my “eating for tumor.” Great pun, but puns suck. After consulting with the urologist number 1, we scheduled a CT scan (with contrast) and a cystoscopy. They also test voided urine for cancer cells, but that test is notoriously poor.After a week or so, the day of the cystoscopy arrives, and I still haven’t seen the CT scan results uploaded to my “patient portal.” A notation on the page hints: “Some sensitive results may not appear until approved by your doctor.” Oh.Urologist comes in looking through pages on a clipboard.“So we’ve already discussed your CT results, correct?”“No, sir. That wasn’t me.”“Oh. Well, the scan shows a 2.1cm mass on the wall of your bladder.” (Post surgery notes estimated it at 4cm.)I am at this moment flat on my back, legs bent down at the knee. Pants around my ankles as directed, with thin paper preserving my vanishing dignity. This is how I hear there’s a mass. But during our consult, we talked about malignant versus benign tumors, so there’s still some hope. Could be some sort of bladder skin tag, right?“So we’re going to take a look inside to confirm, you want to watch on the monitor?” Of course I do. I’ll spare you the details, but will note a rare biological win for women over males. Women have a shorter urethra than men do, and it is of a “larger caliber.” Cystoscopies are unpleasant, but worse for men. Doesn’t balance the universe of wrongs, but it’s something. After seeing the taunting tumor up close, the invasion was over in minutes. The nurse left, and the doctor sat down. I am still lying on my back with thin paper covering me, pants around my ankles, and now the water jets used in the procedure have me lying in a cold puddle. But he sits.“So we’ll schedule surgery to remove the tumor and then begin a round of BCG once you heal.” “Wait, you said something about benign versus malignant the other day?”Looking at chart. “Oh, it’s cancer. Anyway, you’ll need general anesthesia but it’s an outpatient procedure. Same process as today for the most part, but a much wider tube is used for the instruments. See the receptionist to schedule the surgery.”And that’s how I learned I have cancer. He left, and I blotted and wiped as best I could and zipped up. My wife was in the waiting room. She knew nothing, as we had not seen the CT results to even worry about a mass. I was left alone in the room, realizing I now had to break the news to her in the middle of the waiting room. One of the unexplained and frustrating things about cancer is finding ways to communicate it to others. Their reactions will vary; based initially on their own fears of mortality and personal experience. You will see the fear flash their eyes as they glimpse the oncoming train, before quickly focusing on the realization that it’s not them this time. Yet.My wife was different. She knew this was a possibility, so she had addressed and tucked away any personal terror. The cancer casualties in her life include her mother, who suffered for nearly twenty years. Journal articles were published using her mother as data. Beyond the heart-wrenching years watching her mother suffer, my wife has also lost three friends so far. One she’d known since they potty-trained together, one who saw her through her divorce and first years as a single mother, and one we lost just a few years ago. This last battled cancer to a stalemate in the 1980s, only to have it return for the finale thirty years later. I stepped into the waiting room, looking exactly the same as I did an hour earlier. Her eyes searched mine, and I shrugged while attempting a grin. Seven steps to her ear. “I appear to have a little light cancer.” Her tears were immediate, but she also struggled to not make a scene. She has a background in cancer research, and I insisted that it was time for her to meet the urologist and ask a few questions. One question she had involved the use of a special light that appears to better illuminate tumors. While removing the first, the surgeon could use this blue light rather than the standard white light to ensure no other nascent assassins lurked. His answer: “We don’t use blue light.” Oh, why not? I expected him to rebut the research my wife had found online. “It’s an expensive machine.” Even with the best care, the margins are considered in the house’s favor. Back in his office days later, the urologist tells us the pathology confirmed a low-grade tumor that had not invaded the muscle or the lamina propria. I have the best kind of bladder cancer. This revenue stream will likely extend for decades. He restated the course of action. Heal for three weeks, then six weeks of BCG - weekly injections (same route) of attenuated tuberculosis vaccine, held in the bladder for two hours, then voided. At this point, I raised the research I’d done that showed a global shortage of the BCG vaccine. People with high-grade tumors (who really need it) are being denied, or having their treatment truncated. Merck is the sole manufacturer, it’s hard to curate, and it’s not a highly profitable medicine. NB: Have you ever heard of a Viagra shortage? The manufacturer is increasing production, but BCG is also used to vaccinate tuberculosis worldwide.My question to him: shouldn’t I consider the high-grade tumor people who are having their treatments cancelled or truncated because of this shortage? I was assured my generosity was laudable, but that this was no time to be altruistic. He has practiced for over 15 years, and has never seen a low-grade tumor return after a BCG treatment. It was “up to me,” but honestly - why not seek a treatment that will work? Ok, that is neither a controlled study nor a random sample. It doesn’t account for tumors in his practice that may not have returned with any course of treatment, or that chemo would have worked as well for his non-random sample. The message was clear: you can afford it, I have some, and I’m confident this solves your lifetime fear. Why not grab it and go? As I healed, I kept going over the choices. Honestly, part of me was looking for a reason to not have a TB vaccine jetted into my urethra every week for most of the summer. But that aside: how serious was this shortage? And what are the side effects, if any? Do I need this? The answer to the first question came with that research, which led me to stories of people with high-grade tumors who were “cut off” after two or three weeks. If one of these people were in my living room, how would I explain my successful regimen, likely more than I needed? Why do I get the widest path to continued life, when I could fit through so many others that are denied them? What if I really need rationed BCG some day, and I’m the one asking dark questions in their living room?As to the side effects, they exist. There is some risk. Every invasion of the urethra brings risk of infection, and BCG side effects - while rare - are not a good thing. These range from infection to something charmingly referred to as “irritated voiding symptoms,” and the rare life-threatening sepsis. One paper estimates 20% of patients cannot tolerate BCG due to these side effects. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3388311/) Also rare: BCG can enter the bloodstream and cause serious infections, years after treatment. Years later you get a fever, treat it with Tylenol to no effect, and finally consult medical attention. Another otherwise normal occurrence in life is now wrapped in razors. (https://www.cancer.org/cancer/bladder-cancer/treating/intravesical-therapy.html) [How rare? How much not a good thing is it?]Why then is this BCG a reflex answer for Urologist 1? I have a low-grade cancer, often treated with chemotherapy. BCG is favored for high-grade tumors, and carries risks. Why do I need this? The global shortage has led to some rationing. The Bladder Cancer Advocacy Network issued guidelines specifically asking that low-grade tumors not be treated with BCG. How is it possible this urologist is blithely unruffled by this? Seems he’s not unique. “Multiple organizational guidelines exist to help practitioners manage this complicated disease process, however adherence to management principles amongt practicing urologists is reportedly low.” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5315602/) I sought a second opinion, this from a National Cancer Center. Happily, there I found my cancer nerd. Urologist number 2. Sitting with him on a Friday morning, after a week wherein he had completed ten surgeries, he was as energetic and excited to talk bladder cancer as you would want. My wife was thrilled and, for the first time in this experience, treated with respect. Together, they nearly vibrated with joy as they talked about his recently awarded five-year research grant. Urologist number 2 flat out told me that not only was the BCG shortage real, but treating me as a low-risk patient with BCG would never be his course of action. “I have several options available to me, but many of them require no BCG for the past two years. If I give you BCG now and there’s a recurrence, I am left with fewer options.” You want more options at every turn. My military education resonated here. Don’t limit your options when confronted with an adaptive adversary.It’s important to pause here and state the obvious answer: the drastic option, the last resort, is a radical cystectomy. The end game for many cancers is to remove the part of the body that will not stop mutating. For bladder cancer, this amounts to the removal of the bladder, nearby lymph nodes, and the prostate - should you own one. At this point, the proud little soldier has stood at attention for his last time. The bladder is replaced by a pouch worn outside the body. Welcome to urostomy. There are some variations on the theme, where a smaller neo-bladder is created, but this remains the life-changing event that it sounds.Urologist number 2 does not have revenue goals. He is a both a researcher and practitioner for a university hospital, and is measured by the former endeavors rather than profits from the latter pursuit.Cystoscopies can run to $400 per exam. Each time. BCG can cost $200-600 per dose (I expect the shortage will drive prices up), the outpatient surgery can approach $7,000. Each time. “One study found that the average cost of bladder cancer among patients surveyed was $65,158. On average, the study found that 60% of the costs ($39,393) were due to surveillance and treatment of recurrences. 30% of the costs ($19,811) were due to complications from bladder cancer, the study reported.”Reading further in a bladder cancer support forum, I see one gentleman wrote to say he had been diagnosed with a high-grade, invasive tumor. The doctor wanted to get it out quickly, but he’s putting it off due to cost. I had wrestled with the post-surgery treatments, but he was putting off surgery. For a much more dangerous tumor. Other patients were looking to see which states offered more affordable insurance (read: Medicaid expansion states); and planned to move their families there so they could afford to have bladder cancer. Before discrimination based on pre-existing conditions was outlawed under the ACA, even this would not have been a solution. I never considered moving, I never considered not being able to afford medical care. I blinked where others balked. And still others die.Having means translates as access to better health care. But as I learned this time, it doesn’t always translate to the proper health care. But having means still matters, if you’re living in a country that believes health care should be a business. I’ve always feared sharks, and not just because I lived near the setting for the fictional beach in the Jaws movie when it premiered. I fear the inability to reason with it. My entire existence ends because a fish was hungry, my only value as food. In the movie Saving Private Ryan, one of the more haunting scenes for me is the young man lying wounded on the stairs, trying to negotiate with the man holding a bayonet to his chest. “Wait, wait, wait,” as the blade severed his heart almost gently. In cancer, I’m learning my body is currency. My cancer nerd experience was delightful, but immediately after my initial consult, I was introduced to a young researcher who asked if I would permit my tissues to be added to a ‘bio-bank’ for ongoing research. Completely voluntary and of course I gave permission. My late mother-in-law’s cancer was a fascination to the researcher, even as I learned her fatal cancer was actually caused by radiation treatments from earlier ones. There is a hospital on the campus of NIH, where terminal patients check in with no hope of a cure. The only reason for their stay is to help the researcher learn from their dying. Volunteering my body as a resource is a choice I would make. I much prefer the National Cancer Center’s valuation of my body to the profit center’s perspective. But I join the legions whose body is not their own. Some have always lived in that reality, I am late to realize. The song lyric only now makes sense to me. “I feel myself a cog in something turning.”There is no option providing me optimized care that lives separate from how my disease may benefit institutions of research or reward shareholders. Yet I am the most fortunate, still. I can afford to have bladder cancer. So far. For those who cannot access $500 or other deductible, the tumor grows unmolested. For those who do not have access to affordable health insurance, no one is negotiating prices down on their behalf. There is no network, there is no net. Their bodies lack currency, are of no value to the cancer industry, and they have no negotiating leverage.I’ve heard arguments that no one is denied medical care in America, because emergency rooms cannot turn people away. No emergency room doctor treats cancer.Managing the Cost of Cancer Care. ASCOanswers. 2015. http://www.cancer.net/sites/cancer.net/files/cost_of_care_booklet.pdf.Avritscher E., Cooksley C., Grossman H., Sabichi A., Hamblin L., Dinney C., Elting L. Urology. 2006; 68(3): 5490553(GBoDHFC Network. Evolution and patterns of global health financing 1995-2014: development assistance for health, and government, prepaid private, and out-of-pocket health spending in 184 countries.Lancet2017; 389:1981-2004.) as cited in https://www.urologytimes.com/bladder-cancer/cost-considerations-management-bladder-cancer
30 Comments - Posted Nov 16
Tale of two Cancers~A cargivers perspective
A Tale of Two Cancers~A Caregivers PerspectiveDawn M. Eich·Friday, September 14, 2018From 2015~By Gods good grace, my son has been in remission for 20 years, My husband is currently NED (No Evidence of disease!)In 1992 my 2 month old son was diagnosed with a type of Non Hodgkin's Lymphoma, Stage IV called Langerhans Cell Histiocytosis X.September 1992All the symptoms were there but doctors never saw it. I was labelled a "difficult parent" that questioned the care they were giving him. I saw it everyday; in my sons labored breathing, in the "suspicious spots that appeared on his skin not to mention the less than aromatic perfume radiating from his skin. My maternal instinct was in overdrive. Doctor's thought I was crazy, assuring me my son was "fine"! I decided to show them crazy! I knew he wasn't fine and I dug my heels in assuring them I wasn't leaving until they found out what's wrong with him. A few chest x-rays later they found it. Who's' Crazy now!? The mass started in his thymus glad, grew and covered his trachea, heart, lungs, he had spots on his liver, bones around his eyes with multiple skin lesions. One moment being told my son was fine to the next hearing he was dying was surreal to me. As a parental caregiver of a sick child, I did what every parent faced with this does, I loved him and supported him unconditionally. My role was clearly defined, help my son travel the most difficult journey on earth he would face. I did it whole heartedly and willingly. To this day there is no regret for that time in my life. I felt and still feel it is a privilege to be his mother and share that journey with him. When the door of HOPE would slam in my child's face I'd find a new door, crawl through a window or bust out the jackhammer. My son never disappointed, he was a Fighter. It was my job to be the encourager. I held the spit bucket for my young champion pushing him back into the ring to go through rounds and rounds of chemo. After 6 years of battle he knocked the disease out! Fast Forward to 2014...The same enemy with a different name takes aim a my husband. There was no warning. The Mack truck of "Bladder Cancer" ploughed right into the both of us. LCNEC-Large Cell Neuroendocrine Carcinoma-High Grade Apparently, I lack the wifey instinct of "knowing"! Now I'm pissed.I'm mad, angry, frustrated and all the emotional vomit relating to the unfairness of life has befouled our life. My role this time is clearly defined. Love unconditionally. I wasn't ready for that, I'm still angry.My husband did not want to fight. He threw in the towel before entering the ring. As a Caregiver of a sick husband, I did what every wife faced with this does, I kicked the spit bucket across the floor! There was no way I was going to love him and support him unconditionally. My role was clearly defined, help my husband travel the most difficult journey on earth he would face. Looked to me like he was going solo! An unconscionable rage takes over. When the door of HOPE would slam in his face I didn't look for a new door or crawl through a window, the jackhammer covered in dust, sat in the corner. I have no control over his decision and utilizing all my powers of manipulation have failed.Except one. I plead with him, please try as tears rain down my face. He tries and faces a future neither of us thought possible. He finds out his life is worth living. I let a little love show. Not too much, I'm still mad. He has no idea why. I've given myself permission to feel the way I do. We have good days, and great days. We have mad days and sad days. Cancer is a thief. She impacts not only the patient but everyone around the patient. Some to a greater degree of difficulty. I've often compared my two roles as a caregiver. Honestly the journey was easier with my son. One, he was in diapers so I controlled his entire world. I found the loving was easier. More easily given and received. I was his whole world. He was mine. My love for my husband is as profound but I find I've been guilty of adding condition's to my love for him. If he does this or he does that.... So here I am in the middle of the night having another revelation about this journey. Love should just be love. Without conditions and limits. I've given myself permission to experience to my feelings. I'm allowed to have bad days just like he does. But I'm also allowed to have good days. I'll never be perfect and neither will he. That's what makes it work. For the moment. Regardless of how many doors slam in our faces. I am my husbands whole world and he is mine. I will try again today to love him unconditionally. Now where did I leave that Jackhammer? ~D.M. Eich
4 Comments - Posted Sep 14
A Tale of Two Cancers~A Caregivers Prespective
In 1992 my 2 month old son was diagnosed with a type of Non Hodgkin's Lymphoma; Stage IV. All the symptoms were there but doctors never saw it. I was labelled a "difficult parent" that questioned the care they were giving him. I saw it everyday; in my sons laboured breathing, in the "suspicious spots that appeared on his skin not to mention the less than aromatic perfume radiating from his skin. My Maternal instinct was in overdrive. Doctor's thought I was crazy, assuring me my son was "fine"'I decided to show them crazy!I knew he wasn't fine and I dug my heels in assuring them I wasn't leaving until they found out what's wrong with him.A few chest x-rays later they found it. Who's' Crazy now!?The mass covered his trachea, heart, lungs, he had spots on his liver, bones around his eyes and skin lesions. One moment being told my son was fine to the next hearing he was dying was surreal to me. As a Parental Caregiver of a sick child, I did what every parent faced with this does, I loved him and supported him unconditionally. My role was clearly defined, help my son travel the most difficult journey on Earth he would face. I did it whole heartedly and willingly. To this day there is no regret for that time in my life. I felt and still feel it is a privilege to be his mother and share that journey with him. When the door of HOPE would slam in my child face I'd find a new door, crawl through a window or bust out the jackhammer. My son never disappointed, he was a Fighter. It was my job to be the encourager. I held the spit bucket for my young champion pushing him back into the ring to go another round.After 6 years of battle he knocked Cancer out! Fast Forward to 2014...The same enemy with a different name takes aim a my husband,.There was no warning. The Mack truck of "Bladder Cancer" ploughed right into the both of us. Apparently I lack the wifey instinct of "knowing"! Now I'm pissed. I'm mad, angry, frustrated and all the emotional vomit relating to the unfairness of life has befouled our life. My role this time is clearly defined. Love unconditionally. I wasn't ready for that, I'm still angry.My husband did not want to fight. He threw in the towel before entering the ring. As a Caregiver of a sick husband, I did what every wife faced with this does, I kicked the spit bucket across the floor!There was no way I was going to love him and support him unconditionally.My role was clearly defined, help my husband travel the most difficult journey on Earth he would face. Looked like he was going solo!An unconscionable rage takes over. When the door of HOPE would slam in his face I didn't look for a new door or crawl through a window, the jackhammer covered in dust sat in the corner.I have no control over his decision and utilizing all my powers of manipulation have failed. Except one. I plead with him, please try as tears rain down my face.He tries and faces a future neither of us thought possible.He finds out his life is worth living.I let a little love show. Not too much, I'm still mad. He has no idea why. I've given myself permission to feel the way I do. We have good days, and great days. We have mad days and sad days. Cancer is a thief. She impacts not only the patient but everyone around the patient. Some to a greater degree of difficulty.I've often compared my two roles as a caregiver. Honestly the journey was easier with my son. One, he was in diapers so I controlled his entire world. But the loving was easier. More easily given and received. I was his whole world.My love for my husband is as profound but I find I've been guilty of adding condition's to my love for him. If he does this or he does that....So here I am in the middle of the night having another revelation about this journey. Love should just be love. Without conditions and limits.I've given myself permission to experience to my feelings. I'm allowed to having bad days just like he does. But I'm also allowed to have good days.I'll never be perfect and neither will he. That's what makes it work. For the moment.Regardless of how many doors slam in our faces.I am my husbands whole world and he is mine.I will try again today to love him unconditionally. Now where did I leave that Jackhammer? ~D.M. Eich
12 Comments - Posted Jun 08
Nutrition and Bladder/Prostate Cancer
NUTRITION AND PROSTATE CANCER: CAN DIET AND LIFESTYLE IMPROVE CANCER OUTCOMES?byDR. STACEY KOFF, MD(A summary of a presentation to the Walter Reed National Military Medical Center Prostate Cancer Support Group on August 3, 2011)INTRODUCTIONThank you so much for that kind introduction. You may have noticed among the nice things said about me is that I am not a nutritionist or dietician. I don’t have formal training in those areas, but I do have a personal interest in them, and I have done much self-study. That is why I wanted to talk to you about what I have learned over time regarding diet, nutrition, lifestyle and prostate cancer. My motiva- tion for studying diet, nutrition, and lifestyle stems from a question I often receive - "Doctor, is there anything else I should be doing to deal with pros- tate cancer?" My answer was often less than con- vincing, so I decided to do something about it. No doubt there are some here tonight who are well- versed in the areas of nutrition and diet. If you are, I welcome your comments and participation as ap- propriate.IS IT WORTH THE EFFORT?My first concern was whether there was any real evidence that exercising, eating right, and other healthy practices, would be of any benefit to my patients who wanted to prevent cancer or have bet- ter cancer-related outcomes. Here is one example from a study published in the Archives of Internal Medicine. It was a substantial effort sponsored by the National Institutes of Health and the American Association of Retired People. It found that per- sons in the top quartile of red meat consumption were more likely to develop cancer and die (for a multitude of reasons) than those in the lower quarti- les. So daily red meat intake was found to be es- pecially risky to health.A 2002 study reported in the New England Journal of Medicine had some interesting findings for urol- ogy patients related to diet and the formation of kid- ney stones. Prior to this study, most persons prone to kidney stones were counseled to eat low-calcium diets. There were two groups in the study; oneone group was told to restrict its calcium intake, and the other group told to restrict protein (meat) and salt intake. It turned out that the second group, with normal calcium intake, but low protein (meat) and salt intake, was more successful in preventing kidney stone formation. It had half the rate of kid- ney stone relapses than the calcium-restricted group. A more recent study learned that persons prone to kidney stone formation were very willing to take prescribed medications, adjust their fluids, change their diet, etc., in order to avoid another stone event. This straightforward conclusion was remarkable in that urologists did not realize how much patients were willing to cooperate in lifestyle changes in order to avoid kidney stone formation.There was an large, older study of bladder cancer (1999) involving 48,000 men who were followed for ten years; 252 were diagnosed with bladder cancer during that time. Participants who had greater daily fluid intake (about 2.5 liters of fluid), had half the cancer risk than those with the lowest intake (about 1.3 liters of fluid). Put another way, participants who drank at least six cups of water had half the risk of developing bladder cancer compared to the risk of the participants who drank about one cup of water. These findings regarding water intake have not been consistent in every trial, but these findings make a lot of sense to me. One theory about the formation of bladder cancer is that there are car- cinogens in the urine itself. So if you drink more fluids, or perhaps more importantly if you empty your bladder more frequently, you dilute those car- cinogens and there is less contact time with the bladder lining, so there is a decreased risk of de- veloping cancer. More is better!PROSTATE CANCER ISSUESThere is much to read about diet, nutrition, and life- style and the prostate. I want to discuss what we know about these relationships across the spec- trum of prostate issues such as benign changes,6prevention, prostate cancer diagnosis, active sur- veillance, prostate cancer treatments, and andro- gen deprivation.Benign changes. In the older urology textbooks, benign prostatic hyperplasia (BPH) problems meant urinary symptoms such as getting up during the night, having a weak stream, frequent urination, and the like. These older texts found that there was an association between beef intake, milk in- take and the urinary symptoms. We have more current data about BPH as a result of the classic Prostate Cancer Prevention Trial. During the seven years of assessment 876 men were diagnosed with BPH. (i.e., they received medications or had sur- gery for BPH). An analysis of food questionnaires showed a lower risk for intake of protein, alcohol, and vegetables, but an increased risk for fat intake and red meat. To clarify, it was not protein intake per se, but specifically red meat that constituted the risk. For those of you who enjoy frequent red meat intake, you may not be happy to hear this!There is also some data on the effects of exercise and BPH symptoms. A 2008 study found that among runners, those who ran longer and who could run faster had a decrease in urinary symp- toms. I must say that this study, especially, the speed portion, doesn't make intuitive sense to me. But it does reflect the overall interest in these sorts of issues, an interest in finding out if these disease processes are inevitable, or whether they can be modified with good diet habits and an active life- style.PROSTATE CANCER PRINCIPLESLet’s transition from BPH to prostate cancer. Based on autopsy studies, many men have had latent prostate cancer. The rates of latent prostate can- cer are uniform across populations worldwide and are about 30% for men under age 50 and 60-70% for men over 80 years of age. But, clinically- evident prostate cancer affects only roughly 1 in 6 men in the United States. This clinically-evident rate varies widely between and even within coun- tries.Genetic aspects. Most prostate cancer cases (85%) are felt to be sporadic, but evidence does exist for a genetic or hereditary component (15%) in prostate cancer incidence. This conclusion is based on observations that relatives of patients younger than 55 years are at higher risk for pros- tate cancer than are those with older affected rela-tives. The number of affected family members and their ages at onset are the important determinants of risk among relatives.Environmental aspects. Evidence of environ- mental risk for prostate cancer is found in the fact that Japanese and Chinese men who reside in the United States are diagnosed and die from prostate cancer more than Japanese and Chinese men who remain in their native lands and presumably con- sume their traditional native diets. The “westerniza- tion” experience of these men, especially of their diet, results in increased diagnoses and death rates from prostate cancer. Furthermore, as the Japa- nese diet in general becomes "westernized," we observe that more Japanese men are being diag- nosed and dying from prostate cancer than histori- cally has been the case.Androgens. It is well known that androgens such as testosterone “feed” prostate cancer. It is not en- tirely clear what role estrogen plays in the devel- opment of prostate cancer. Estrogen is thought to protect against prostate cancer by inhibiting pros- tate epithelial cell growth. Alternatively, it may increase cancer risk by encouraging inflammation in concert with androgens. Also, increases in age- related prostatic disease parallel increases in se- rum estrogen levels; and on the other hand, there is a lower incidence of prostate cancer in those cul- tures with diets rich in phytoestrogens (phytoestro- gens are plant sources of estrogen). The bottom line is that outcomes are mixed regarding the im- pact of estrogen on prostate cancer.Other factors. Let me mention some other cancer- inducing phenomena. Insulin-like growth factor (IGF-1) slows desirable, normal cell death (apop- tosis). When the normal cell death process slows, cancer formation may occur. IGF-1also promotes cell proliferation, and there has been some asso- ciation of high levels of IGF-1 and prostate cancer. IGF also has been found in modified foods and supplements. Leptin is produced by fat cells and it appears in vitro to have growth factors that induce cancer.Vitamin D. You read a lot about vitamin D and its relationship to prostate cancer and other cancers as well. Indications are that low levels of Vitamin D are associated with prostate cancer. We get some of our vitamin D from diet, but much of it comes from exposure to sunlight converted in the skin. Men in northern climes with less exposure to sun- light, and African American men with darker skin, get less benefit from the normal absorption of sun-7light, and have higher rates of prostate cancer. Whereas Japanese men who tend to consume more fish with high vitamin D content have less prostate cancer incidence. Studies also indicate that calcium tends to depress vitamin D, so men getting excessive calcium from diet and supple- ments may be at increased risk for prostate cancer. Other studies indicate that vitamin D has anti- proliferative growth affect on cancer cells.Prostate cancer prevention. Many of the steps proposed to prevent prostate cancer (and other cancers for that matter) are directed at decreasing levels of oxidative stress and DNA damage at the cellular level. That is why foods which are consid- ered “antioxidants” are said to be “anti cancer." There are several oft-studied dietary factors that may affect prostate cancer risk. They are lyco- pene, selenium, Vitamin E, cruciferous vegetables, fish, and meat/dairy/fat, and soy. They act as anti- oxidants against the formation of free radicals. Free radicals can be mutagenic and damage the DNA of cells causing them to lose their ability to regulate their normal replication and death.Lycopene often has been in the news. It is a red- colored chemical which is thought to be a strong antioxidant. Most studies are about tomatoes, probably because the tomato industry has better marketing skills! Actually there are other products such as watermelon that have more lycopene in them. One study in favor of lycopene as a cancer preventive was the Health Professions Follow-up study that showed a 35 percent decreased risk of prostate cancer in men who ate ten versus a man who ate one and a half weekly servings of a to- mato-based food. Other studies have not been as conclusive, but one metanalysis found that there was probably a ten to twenty percent decreased risk of prostate cancer with lycopene intake.Selenium at one point held a lot of promise for cancer prevention. One published study found that selenium is only helpful if an individual's selenium level is low at a base line. Americans tend to be a well- nourished group so low selenium levels is not the problem. Selenium is an antioxidant has been shown to inhibit tumor growth in the laboratory. Some of you may have been in the so-called Select Trial. It was a well-conceived randomized trial, but it had negative aspects, and it was stopped ear- ly for that reason.Vitamin E has also been shown to inhibit prostate cancer cells in the laboratory and the Health Pro- fessions Follow-up Study. There was some evi-dence of a decrease in advanced disease with Vi- tamin E supplementation. But there has been noth- ing conclusive. Evaluating supplements is difficult because establishing the dosage is always tricky.Cruciferous vegetables have antioxidant proteins which in laboratory models have decreased tumor growth. Some controlled studies have demon- strated a mild association between reduced pros- tate cancer and vegetable intake. The common cruciferous vegetables are broccoli, cauliflower, cabbage and kale. About half of the case–control studies have demonstrated a mild association of vegetables with reduced prostate cancer risk. In the Health Professionals Study there did not seem to be a decreased risk with vegetable intake until the researchers considered the years prior to entry of the study. Then men who consumed a high amount (more that 5 servings/wk) of cruciferous vegetables in the years before entrance into the study did have lower risk of developing prostate cancer, suggesting that more long-term intake may in fact reduce prostate cancer riskFish contain omega-3 fatty acids, a group of essen- tial unsaturated fats that are believed to reduce cardiovascular risk as well as carcinogenesis Two prospective studies have demonstrated an inverse association between fish consumption and prostate cancer risk. Fish is also a natural source of vita- min D.Meat, dairy, and fat consumption can affect the levels of such hormones as testosterone and estro- gen, as well as IGF, the insulin-like growth factor I mentioned earlier. In addition, red meat and dairy products contain complex fatty acids which, when metabolized, can act as a preferential energy source in cancer cells and increase hydrogen per- oxide production, an oxidative stressor for cells. Charring of meats during the cooking process pro- duces heterocyclic amines, which are carcinogenic and increase prostate cancer risk in animal models. Again, bad news for people who like to grill steaks! Moderation in meat, dairy and fat intake should be considered by anyone trying to prevent prostate cancer and other cancers.Soy and Omega Acids has a multitude of agents called isoflavones which act like estrogen. These isoflavones have been shown to inhibit benign and cancerous prostate cell growth in animal models. Soy intake may be one of the reasons that those men who eat a traditional Asian diet, with an em- phasis on soybeans and foods made from soy, have lower incident of prostate cancer. The tradi-8tional western diet has very little soy intake. There is considerable interest in soy, so you will see fre- quent trials and studies involving soy or isofla- vones. Here is an example of a small, randomized, controlled study. Eighteen men diagnosed with prostate cancer were randomized to either a low- fat, high-fiber soy-supplemented diet or to a typical Western diet that had about 40% of daily calories from fat. Next their blood serum was used to grow prostate cancer cells. The cancer grew less suc- cessfully on the serum from those patients following the low fat, high fiber diet with soy. Those patients had a desirable decrease in omega 6 and an in- crease in omega 3. A very similar study involved 40 men who had undergone prostatectomy and were felt to be at high risk of recurrence. They were followed for six months and the serum of those on the "healthy" diet had lower levels of IGF and their serum seemed to inhibit growth of LnCap cells in vitro. Let me add something about omega acids. What are they? They are fatty acids that come from our diet. The body takes the fatty acid compounds and makes hormones from them. The hormones derived from omega 6 tend to be detri- mental because they can lead to inflammation and an increase in cell proliferation. The byproducts of omega 3 fatty acids tend to be beneficial, working against inflammation and cell proliferation. Even though it would seem that you only want the omega 3 in your body, ideally the omega 6 and 3 fatty acid levels should be balanced.Active surveillance. I want to call the Prostate Cancer Lifestyle trial to your attention because it is apropos to our discussion tonight. It was a ran- domized intervention trial with a control arm. The patients had been diagnosed with what was felt to be low-risk prostate cancer, so they had selected active surveillance for their therapy.. The treated group was counseled to change towards a low-fat, plant-based diet combined with exercise and stress reduction. The control group got “the usual care.” The patients were followed for two years and the treated group had much lower rates of switching from active surveillance to more aggressive treat- ment for their cancer. Only 5% of the treated group had done so by the trial's end compared to 27% of the patients under usual care. The researchers concluded that patients with early- stage prostate cancer on active surveillance might be able to avoid or delay the necessity for conventional treatment for at least two years by making changes in diet and lifestyle.Another small but interesting study addressed the role of diet and stress after radical prostatectomy. In this study ten patients had a rising PSA following surgery for prostate cancer. They all were placed on a low-fat, high-fiber, plant-based diet combined with a stress reduction program. The researchers noticed that the rate of rise in PSA decreased in eight of the ten men after they started following this regimen. The calculated PSA doubling time of their PSA increased dramatically from six and half months to eighteen months.Flaxseed. Interest in the influence of flax seed remains high. So what is flaxseed? It is a tiny seed packed with healthy fatty acids. Its value as a health food has been recognized for centuries, of- ten as a laxative. King Charlemagne reportedly required his subjects to consume it for their health. It is the seed portion, not the oil, that contains lig- nans. Lignans are plant compounds that mimic the action of estrogen and act like antioxidants. It is best to grind the flaxseeds and consume them with cereal or a like product rather consume them as flaxseed oil. There was a study of 163 men who had elected radical prostatectomy. They were ran- domized to different diets, with and without flax- seed, prior to surgery. After surgery their actual tumors were examined for proliferation (proliferation the abundant generation of abnormal cells). The tumors of the patients who included flaxseed in their diets showed decreased proliferation com- pared to patients without flaxseed in their diets.Androgen deprivation therapy. I don't want to finish tonight without talking about androgen depri- vation therapy (ADT). Most of you are familiar with it, and perhaps had received this therapy. Some- times it is used in combination with radiation ther- apy, sometimes it is used alone for metastatic pros- tate cancer. ADT has a clear association with bone loss and it has recently been recognized for in- creased risk for cardiac events. Several trials have focused on the cardiac issue with mixed results. Some are finding that even men on short term ADT as an adjuvant therapy with radiation may experi- ence increased cardiac events. Hormone therapy is thought to contribute to decreased glucose toler- ance, cholesterol issues and obesity, especially central obesity. It is recommended that men initiat- ing ADT see their primary care doctors to get a check of their blood pressure, lipids and glucose levels. Quite frankly, these are things that need to be done anyway for general health screening. The current guidelines are to keep lipids in check, main- tain blood pressure in the normal range, and control9glucose levels. A baby aspirin a day is a good idea for those who don’t’ have any contraindications to it. And don’t smoke!Regarding bone health, bone loss is one of the un- seen complications of ADT. It can be ongoing and unnoticed until a fracture occurs. The risk of frac- ture is related to how long you have been receiving ADT. If you have preexisting osteoporosis and then get metastases from your prostate cancer, the risk of bone-related events increases. Osteoporo- sis is not just a disease affecting men on ADT. It is related to age and about five percent of men are osteoporotic before they even start hormone ther- apy. So careful monitoring is required.Proper prevention of bone events starts with moni- toring, typically with a DEXA scan. About 30% of men have osteopenia and 5 % have osteoporosis before even starting ADT. Patients should be aware of the recommended intake of calcium and try to achieve it through diet or calcium supple- ments with vitamin D (1,000 to 1200 depending on age). Weight bearing exercises are very important and bisphosphanates should be considered. And, of course, don't smoke, and limit the use of caffeine and alcohol. Bisphosphanates may affect jaw bone disease, so a dentist needs to be involved to avoid complications.CONCLUSIONAt the outset, our question was "Can diet and life- style improve cancer outcomes?" Certainly the available evidence is often inconclusive. Neverthe- less, there are sufficient reasonable indications that you can be proactive in prostate cancer prevention and control by the commonsense application of cer- tain diet and lifestyle principles. Moreover, these principles also have a positive impact on overall health beyond prostate cancer. I highly recommend the American Cancer Society's evidence-based guidelines for cancer prevention as your primary source for advice. They are:Maintain a healthy weight throughout life; Adopt a physically active lifestyle; Consume a healthy diet emphasizing plants; and Limit alcohol consumption. In addition, I believe the evidence supports these related conclusions and recommendations: red meat and dairy consumption increase the risk of cancer; high calcium intake, especially with sup- plements, increases the risk of more aggressive cancer; consider having one or two meals a week of a soy-based protein; consider adding flaxseed toyour diet; be aware of what your vitamin D level and restore it as necessary by spending more time outside and adding a supplement as required; con- sider increasing lycopene intake; balance your fatty acids; and don’t overlook about your bone health; All of these things are good for your heart, too, and even though we all struggle with your prostate can- cer, the real killer in the US is heart disease.My purpose tonight was to generate some interest in the topic of diet and lifestyle as it relates to pros- tate cancer, and I am happy to answer any ques- tions you might have.QUESTIONS AND ANSWERSQuestion: Does there come a time when a man no longer needs an annual regular PSA testing and digital rectal examination.Answer: An influential article several years ago argued that after age 75 it is probably unproductive to have an annual PSA test because at that age and beyond treating prostate cancer was really not very valuable because it didn't seem to extend lon- gevity. The argument has merit, but I do think the annual digital rectal exam after age 75 is useful. After all, if your doctor can detect a hard and lumpy prostate no matter what your age, you may want to know it. I want to find advanced prostate cancer that may cause you bone pain, and if left untreated, could shorten your life. So I would say the PSA testing needs to stop at some point such as age 75, but the rectal exams should continue. That is my opinion. Having said that, there is unlikely to be a consensus among urologists on the matter.Question: I have read that if you want to enhance the lycopene found in tomatoes it is best to have the tomato processed like sauce or tomato paste instead of the fresh vegetable.Answer: Yes, there are higher levels of lycopene in processed tomatoes.Question: What I can do about my low testoster- one. Is there any diet regimen I can do to raise my testosterone level?Answer: First and foremost, you must have a frank discussion with your physician about your low testosterone concerns. It is may be that he is trying to suppress your testosterone level to combat your disease. Tell him about any fatigue, muscle loss, low libido, and the like. You can certainly work on those kind of symptoms with diet, exercise, stress reduction, etc.10Question: I have read of late that a complete ve- gan diet is effective in preventing cancer or its me- tastasis.Answer: I have reservations about the health claims for the vegan lifestyle. Of course, any sen- sible, balanced diet undertaken with medical super- vision is likely to be heart-healthy and promote one's general health. I myself am not a big booster for the vegan style. I don’t think the data is there to justify the claims heard from boosters, especially the claims regarding cancers of any type.Question: Earlier you mentioned the issue of an- nual PSA testing after age 75. I am 68 with very early stage prostate cancer. I have selected active surveillance as my therapy. Other than scheduled PSA testing, the digital rectal examinations (DRE) and an annual biopsy, are there any other indica- tors of accelerating cancer growth?Answer: I have not seen anything that is clinically used. There is the prostate antigen 3 gene (PCA3), a urine test for cancer aggressiveness, but it is in the investigational stage. As far as being a stan- dard of care, your scheduled PSA testing, DRE, and biopsy seems appropriate. Some medical cen- ters use the MRI as a resource to evaluate whether a patient is a candidate for active surveillance.Question: I have prostate cancer. Is there any downside to continuing PSA testing after 75?Answer: No, because you are in a different situa- tion in that you already have a diagnosis of prostate cancer, so the annual PSA test is part of your con- tinuing therapy. On the other hand, I believe that the use of the PSA test as a screening device for early prostate cancer is unnecessary in men in their mid-70s.
4 Comments - Posted Nov 20
Prostate Cancer - Bladder Cancer - Agent Orange
My husband was diagnosed with prostate cancer in 2004 - he received brarcytherapy - many many complications - repeated urinary tract infections. Over 13 trips to the ER and 7 surgeries.In December 2011 he was diagnosed with Stage 4 bladder cancer. No signs, no symptoms - nothing. Ths is a man who had monthly urine tests because of the infections, quarterly blood work and was being treated by a urologist and infectious disease doctor.He died May 5, 2012 of metasticized bladder cancer. I made sure it was listed on his death certificate.He served in Vietnam from 1968 - 1969 - received a Silver Star and Bronze star w/oak leaf cluster. He never smoked or drank which is what they claim contributes to bladder cancer. No family history either.He received a 30% VA pension for the prostate cancer. We filed an appeal with the VA Feb 2012 claiming the bladder cancer is related to AO. I am working with the County VA rep who is very proactive.I am only 58 and now a widow. I will fight the VA until my dying day to have him declared 100% disabled and have them take responsibility for his bladder cancer.Waiting for a reply from the VA at this point - I will eventually win - it will probably take me many years, but they will take responsibility for this.Has anyone had any success in receiving a benefit with prostate cancer first, then bladder cancer?Agent Orange compensation for Vietnam Vets is one of the governments best kept secrets.
12 Comments - Posted Jun 08
Ed lost his battle on May 2, 2010
It has been a very difficult month and I have kept up with a few on this site. It was suggested I tell our story. So here it is.After Ed completed 6 rounds of dose dense MVAC in feb. and had his scan Dr Assikis told us to take the next couple of months off, travel, relax and that Ed would be around for at least another year. That's what we had hoped for but it wasn't to be. Instead every single day but one for the next two months were filled with complications. Ed either had diarrhea for 5 days and had to be on the Brat Diet, or he was sick to his stomach for days, he had blood in his stools, blood in his ostomy bag, pains in his stomach and no appetite. We called Dr Assikis's office constantly , saw a new urinary doctor who treated Ed for a kidney infection, a doctor who treated Ed for broncitis, and Ed had a colonostophy 2 days before his latest cat scan. It showed that the bladder cancer had grown from the outside through his colon, resulting in partial blockage. Ed was told he would need surgery to unblock it before it got worse. By the time Ed had his scan, he had to have a wheel chair because he was no longer strong enough to walk. His bloodwork showed his sodium levels were very low and he was put on a liquid restriction. His potassium levels were very high, both very dangerous. After his scan, when we met with Dr Assikis , he said that the cancer had come back with a vengence, it was everywhere, doubled in size in his liver and more new ones, in his lungs, lymph nodes, stomach, and colon. Dr Assikis gave Ed one to two months. We were shocked. He offered us clinical trials but Ed was in no shape to travel so we opted for gemzar and taxotere. It would help with the symptoms and maybe more time. Instead it killed him. Ed had one chemo day of gemzar and went down hill fast from there. By the following week we saw Dr Assikis and he was shocked at Ed's fast deterioration and gave him only days to live. We brought Ed home and called around for hospice. What we have learned is that most hospice organizations will not give blood transfusions or hydration. They will only help with pain control and make life easier before dying. I found one that would do those things if necessary. They only come when you call for short visits. Thank god I had our two daughters. Ed would not go to the hospital so we made him comfortable at home. Thank goodness we had a guest room on the first floor because he was too weak to climb the stairs. Dr Assikis had told us that Ed was lucky to be going this way because with liver failure, they just sleep more and more and just don't wake up. Hospice got us everything we requested immediately, most things were never used because he went so fast. Ed refused most pain meds because he wanted to enjoy us til the end. He was rational til the end. He suffered a stroke the night before he died which was scary. Hospice said that it is common to have a stroke when the system is shutting down from blood clots. Three days before he died he mentioned several times that there was a man on our house waiting for him to die. He would look straight at him and ask him what he wanted. Also, the last doctor visit, he told our daughter that a small child was in the waiting room, and she was not there. Knowing that I will be with Ed again one day in heaven helps me get through each day. And knowing that someone came to escort Ed is icing on the cake. Noone knows when Ed's cancer started spreading. It could have already been everywhere at the first diagnosis. It started in a large bladder diverticulum. Every article I have found about that said that you don't last more than 2 years with that because there is no muscle wall to keep it contained. Ed lasted a day over 2 years since his diagnosis. Joycee , who I have stayed in contact with sent me a book on Widows, by Dr Joyce Brothers who lost her husband of 42 years to bladder cancer. I had Ed for 40 years. She had a much tougher time than I am having, even though my heart is broken. The difference between us is that Ed and I talked about his dying for 2 years , Ed taught me how to take over finances, etc, we sold 2 homes in the city and Ed moved me to the suburbs where life would be easier for me. Dr Joyce Brothers said she and her husband never once discussed death. That is a big mistake. Every day is a challenge for me, but Ed and I made the most of each day we had and we have no regrets. I will love him forever.Love and good luck to all,Candon
38 Comments - Posted May 21
To chemo or NOT chemo??
To chemo or not to chemo??…….that is the question……Well here’s the news from the two Oncologists I met with yesterday at PMH (Princess Margaret Hospital - Toronto, 5th top oncology hospital in the world)....I met the first doc, for the first 60 minutes - Dr XXX (Clinical fellow, 2 years to go, medical oncologist, sub specialist in urology, gets do to broader demographic, overseen by Dr YYY)Then met 30 mins with Dr YYY, MSc, FRCPC, head of GU, Assist Prof Medicine UofT, Her primary research focus is in the development of novel targeted anti-cancer therapies….this is irony because the only thing she recommended was CHEMO!!!!!As per their assessment and recommendation……..1.Likely the Bladder Cancer (5cm inside an 8cm diverticulum) had ruptured the fat-wall...removed may 13, 20152.My T3A advanced stage high-grade invasive cancer has 80% component Transitional cell (urothelial) carcinoma with a sarcomatoid variant (estimated as a small percentage maybe 20%)3.I have a 60-70% chance of getting this cancer again (Recurrence rate)4.If it re-appears it will likely be in the bones, liver, lymph nodes and/or lungs and other potentials5.If I get this cancer again, it will most probably be INOPERABLE, which would mean a prolonged death sentence, and put into palliative treatment6.The surgery on May 13 may have seeded more cancer (which in my opinion is the concern), elsewhere, which is their big reason to rush the chemo ……to be effective it must start within 3 months after surgery7.They recommended we start chemo Aug 5th, and all the pre-meds must start before8.The chemo only has a 3-month efficacy period, and since it’s been 2 months plus 3 more weeks until the recommended first dose, it means I’m already on the border of the chemo being effective9.They are recommending Gemcitabine (somewhat gentle) + Cisplatin (platinum based and is nasty)10.The administration could be through a chest Port (a catheter delivers chemo directly into the heart), or the PICC line (IV) which is a long, thin, hollow tube into a vein above the bend of your elbow…both covered by OHIP but some others are not….woohoo11.The 21-day cycle is Day 0 blood work, Day 1 get both chemo drugs, Wait 6 days, Day 8 get Cisplatin , Wait 2 weeks, Repeat 4 times…..so this is a 3-week cycle for 3 months….then possibly repeat12.I will have to do CT scan before with Pre-meds day before, to get a benchmark...scheduled in 2 weeks13.I will have to have blood tests before each cycle to check for WBC counts and kidney/liver dysfunction14.If the chemo works, their studies suggest the Recurrence rate can be reduced to 30% from 60-70% 15.It may take several treatments to be deemed effective16.If symptoms are severe, the dosages will be reduced with little loss in efficacy 17.There is an option to start the chemo process then decide whether to continue Special note: Chemo is labelled as a carcinogen, that is required to be handled as hazardous material, and pharmacists are dying from dispensing it•http://www.nbcnews.com/id/38114586/ns/health-cancer/t/lifesaving-cancer-drugs-may-put-workers-lives-risk/#.VacXG_lViko•http://www.specialtypharmacytimes.com/publications/specialty-pharmacy-times/2015/june-2015/protecting-health-care-workers-from-chemotherapeutic-medication Chemo Side Effects and possible consequences…..1.Nausea and vomiting2.Loss of appetite3.High fever above 38c can be dangerous4.Hair loss (because chemo attacks fast dividing cells)5.Mouth sores (because chemo attacks fast dividing cells)….more drugs prescribed6.Vesicants (blistering) from escaped IV or penetration through veins to the skin7.Intestinal wall damage, Diarrhea or constipation (because chemo attacks fast dividing cells)8.Infection (seriously problematic considering I have a penis tube which because of the indwelling catheter is always in infection mode) and because Bones are damaged by chemo which significantly reduces white blood cells which causes immunity issues (because chemo attacks fast dividing WBC cells)…and remember I have lost 26 pelvic nodes that would normally help immunity down there9.Bleeding or bruising after minor cuts or injuries (due to a shortage of blood platelets)10.Fatigue (because of low red blood cell counts)..usually starting week 3-411.Nerve damage (especially hands and feet) – pain, burning, tingling, sensitivity (peripheral neuropathy which could be persistent)12.Leukemia (later in life)…small percentage13.Sarcoma cancers very possible because this type of cancer will not be addressed by these two chemo drugs14.Hearing problems....you say whaaaat???15.Kidney dysfunction caused by Cisplatin (blood tested along the way)…so sometimes changed with Carboplatin16.Liver problems caused by Gemcitabine (blood tested along the way)17.Blood clots in lungs (Pulmonary Embolism) and legs (Deep Vein Thrombosis) which could be serious18.Recurrence of cancer back in the Bladder (which could be dealt with intravesically - a localised result)If I avoid the chemo or delay the chemo……..1.Every 3 months, they will monitor with CTs and ultrasound and xrays every 3 months…no ‘definitive’ blood markers are possible, and CTs are only reliable for 2 cm lumps which a growth that size makes the cancer too late at that point2.There remains a 60-70% chance of getting cancer again3.Waiting to start the chemo in 3 weeks will close the window of efficacy anyway4.They said it could return in an inoperable form..which becomes a fight to prolong life5.I could try eating a healthy diet (she said ‘it couldn’t hurt and I should stay on whatever you think helps’)……IS THIS the ‘novel targeted anti-cancer therapies’?? hmmmm6.I can get my prostate fixed within a reasonable time-frame And NOTE: I STILL CANNOT PEE …… My 58cc BPH causes retention…..hence the penis straw (foley). I have to keep this in for at least 4 more months, until after the chemo…….or rush to do an operation before the chemo called a TURP (drill the urethra) or a green light laser and wait for that to heal (because of infection) which would delay getting the chemo………and an indwelling catheter is always in 'infection mode anyway' so it’s a catch-22 because it exceeds the 3-month window of the chemo's efficacy....or try some drugs to eliminate the foley (avodart, rapaflow or flomax) .........then turp in 10-20 years……Anyway, In my opinion……..1.The cancer has been growing for years (confirmed by multiple docs)2.They said I shouldn’t even be alive3.The growth was inside the windsock outside the baldder, and bordered on the fat-wall and had vascularity (blood vessels attached), BUT the CT scans, and cytology (cell review) and lymph nodes and biopsies, on multiple occasions showed no cancer outside the diverticulum4.Based on the docs’ assertions, this cancer is high-grade and grows fast (almost a guarantee of recurrence), but IF it has escaped, WHY haven’t other colonies/nodes appeared …. Because there’s been time since I’ve experienced this problem at least since January 5th???......and likely way before…….lots of time to colonize (grow lumps)…...and they had ample opportunity to grow elsewhere…….sure, the colonies may have already started but cant be detected because they’re not large enough (then I’m in deep trouble)5.So the only likely seeding came from the surgery, BUT, in my surgeon’s opinion, it was irrigated very well…..and we’re already at the point of reduced chemo efficacy 6.Even if the cancer reoccurs INSIDE the bladder, which is very possible, that can be treated with greater efficacy, by using other less consequential alternatives (BCG and others)7.There are many alternative methods of killing and preventing cancer that are unfortunately not supported by the medical community, nor have long term studies to prove efficacy, but there are real medical studies now taking place on bio-based (plant-based) options based on significant anecdotal correlations accumulating in MANY collaborative cancer forums……the world’s future big data on the status of health care……..get readyQUESTION: So imagine the 30% outcome plays out like this: you have a choice between Chemo or No Chemo: My analogy , which she really liked……a gun is put to your head, a 6-bullet chamber contains 4 bullets, with the hope you can remove 2 bullets, which leaves 2 bullets left in the chamber (33% chance of blowing your head off) and you pull the trigger (silence)…….OR…….run away quickly and do something else to avoid (risk) that gun catching up to you BUT if it does catch up then it’s possible that you may be asked to pull that trigger with 5 or more bullets later………what would you do?I have a lot of sleep to catch-up on…………for many things to consider………but one thing for sure, I’m absolutely determined, AND CONFIDENT, that I will get this fixed and live happily ever after!!!!!!! :)BODY MIND SPIRITYour honest comments are appreciated. ……..vic
75 Comments - Posted Jul 16