Bladder Cancer Advocacy Network
Founded in 2005, BCAN is the only national advocacy organization dedicated to supporting individuals affected by bladder cancer and advancing research on the disease. They advocate for increased funding for research and greater public awareness to identify effective treatments and hopefully find a cure for the disease.
Signs Of Bladder Cancer
For me, there was no pain, but symptoms of bladder cancer can include back or pelvic discomfort and difficulty urinating. There can be discoloration in one’s urine . Blood in your urine should alarm you, but I admit I pretty much ignored my small blood spots.
Age is a definite risk factor, and possibly genetics. The average age that men get bladder cancer is 73, the exact age I was. About one in every 27 men has a chance of getting it, according to the American Cancer Society. For women, much less frequently, about one in 89.
When an otherwise-perfectly healthy older man like myself is given a potential death sentence , life does take a huge shift. I was diagnosed in January, about the time the coronavirus began its relentless spread across the United States.
The Community Needs To Come Together
I feel very strongly that we need to band together and get some media attention for bladder cancer. Too many people are diagnosed at a later stage when treatment options are not as promising and sometimes much more difficult to endure.
I have asked my GP to please ask all patients questions about their urinary habits every time they come into the office. A few questions – how hard can that be? It is up to us – those directly impacted by bladder cancer – to get the word out. I have thought about reaching out to the national media myself not the big morning shows but some of the others such as “The Doctors” or similar. We must be vigilant with our own journey. We must encourage our medical professionals to ask about the usual symptoms with every patient regardless of age or medical status.
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Coping With Financial Issues
Bladder cancer can significantly impact a patients financial status over time. You may incur a whole range of expenses along with your treatment costs, but resources are available to help you come up with a financial plan and, if eligible, obtain financial assistance.
Along with information from health care providers and social workers, several local and national service organizations help cancer patients facing financial challenges.
Lean On Your Support System
Get a support network in place people to help you and listen to you, says Marcia, the wife of a bladder cancer patient.
Use your support system, whether that’s your friends, family, church, community or support groups. If you face bladder cancer, dont try to go it alone23, says celebrity couple Marilu Henner and Michael Brown.
Don’t be afraid to ask for help from your support system. The stronger your support is, the more likely you’ll open up with your concerns and feelings, and the better off you’ll be emotionally and mentally.
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How Do You Treat It
Bladder cancer can be treated using medication or via surgery.
Medications include chemotherapy, immunotherapy, and targeted therapy.
There are two types of chemotherapy commonly used for bladder cancer: intravesical and systemic. Systemic chemotherapy refers to a drug that is given to target whole-body cancer. Intravesical is a local chemotherapy that is delivered to the bladder through a catheter.
Celebs Who Struggle With Bladder Control
Incontinence is accidental or involuntary loss of urine or faeces .
It is a common condition and it is estimated that one in 10 Americans has continence issues. The problem ranges from small leaks to complete loss of control.
According to a previous Health24 article, incontinence in public is experienced by most people as extremely embarrassing and may have potentially serious psychological consequences.
“Patients who experience incontinence might experience a significant effect on their self-confidence and dignity, according to Dr Ulla Botha, a psychiatrist and senior lecturer at the Department of Psychiatry at the Stellenbosch University.
Depending on the level of incontinence, their general functioning might also be affected, as patients often start to isolate themselves and may avoid social interaction to prevent possible embarrassment. This can even lead to depression.
Incontinence can, however, be treated and managed. In many cases it can even be cured.
A number of international celebrities have overcome any embarrassment and gone public about their experiences with incontinence.
1. Kris Jenner
Matriarch of the Kardashian clan, Kris Jenner has opened up about her bladder problems on Keeping Up With the Kardashians. Jenner is a TV personality, author and former talk show host. She is quite open about her incontinence and admits to wearing incontinence panties.
2. Stephen King
3. Samuel Jackson
4. Katy Perry
5. Kate Winslet
6. Helena Bonham Carter
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Famous People Do We Care
20/01/2019 ·However, the man fought for three long years to win over the disease successfully. It is been 14 years now, he is fit and cancer-free completely. 12. Vinod Khanna. Vinod Khanna is one of the most desirable men in India Cinema during 70s & 80s era. The man left us at the age of 70 years. He was diagnosed with advanced bladder cancer.
Be Open About Your Diagnosis And Treatment
Too many people feel shame or embarrassment about it, said Kevin, a bladder cancer patient. Its important to be open about the issues and not try to hide them.
You don’t have to suffer alone with your newly diagnosed bladder cancer. It’s understandable how you’re feeling. You have a long journey ahead of you, so be sure you’re using all the resources and support you can to help get you through this.
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Quality Of Life Issues
If you have muscle-invasive bladder cancer, radical cystectomy with urinary reconstruction is your standard of care. Although the doctor’s main focus is to treat cancer, it’s important for you to address quality of life issues following your surgery.
Two of the most common issues are sexual and urinary.
Men: A side effect for men with radical cystectomy is erectile dysfunction since the nerves involved with an erection reside at the prostate base, which the surgeon removes during radical cystectomy.
Women: The ability to achieve orgasm could be impacted if the nerve bundles lining the vagina become damaged. Women’s sexual arousal could also be affected if some of the blood supply in the clitoris diminishes during surgery.
These are concerns you should discuss with the surgeon, as certain techniques could help lessen or prevent such issues.
Depending on which type of urinary diversion you and your doctor decide on following radical cystectomy, you may experience:
- Putting a catheter into your stoma or emptying your urostomy pouch
- The stress of having to care for the skin surrounding your stoma
- Medical issues arising from urinary reconstruction, urine blockages or leaks
- Changed sexual functioning due to your urostomy pouch
Coping With Physical Side Effects Of Treatment
Having to live with the treatment’s side effects is often one of the hardest aspects of dealing with cancer. For instance, you could experience certain side effects during chemotherapy at different points. Or, you could experience side effects after your chemo, and some could be long-lasting. Consult with your doctor about coming up with a complete plan for addressing the problems you experience. Try to make sure the plan suits your lifestyle and needs. Consider the following:
Physical activity: Exercise can help with the side effects of treatment such as fatigue, swelling and depression so that you can recover quicker. Yoga, tai chi or a light walk is perfect for getting your endorphins and blood flowing.
Medication: Your doctor might prescribe you medication to help ease treatment-related gastrointestinal side effects, such as nausea, vomiting, diarrhea and constipation.
Contemporary therapies: There are also contemporary therapies that could help treat pain, stress, nausea, sexual side effects and other problems you might experience during your treatment, such as mind-body techniques, acupuncture and massage therapy.
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Tales From The Trenches: Survivor Stories
The ongoing nature of the battle with bladder cancer has led some survivors as well as caregivers to refer to themselves as warriors. Many thanks to the people here who have generously shared their experience. Your courage, tenacity and humor are an inspiration.
Bladder Cancer-Not Just for Old Folks!
- Christine 27 and pregant with TCC
- Roger Barton -35 with muscle-invasive bladder cancer.
- Paul H. 36 with T1, G3 papillary tumor with CIS.
- Alana and Tom Steinmetz Alanas dx: 36, high grade TCC and pregnant
- Young people share Al age 45, Kelly, 38 and Donna age 44
Non muscle-invasive TCC
- Allison Non muscle-invasive, low grade bladder cancer
- Ken Hulse hematuria for two years before diagnosis, clean for five years
- Paul R BCG for high grade TCC/CIS
- Fred BCG+IFN followed by systemic chemo for muscle-invasive TCC
- Brian Gulino carcinoma-sarcoma of the bladder and BCG
- Carole Smith Fighting since 1994-BCG, Mitomycin, many TURs
- Pat Silveria Keeping TCC in check with BCG + immune stimulants
- Garys BCG diary
- Rosie BCG, watchful waiting vs. surgery, bi-polar instrument, Mitomycin C
To RC, or Not to RC How one man with Ta, Grade III TCC+CIS came to his decision to have a radical cystectomyafter seven opinions Read Dans Story
Muscle-invasive Bladder Cancer
Cystectomy with ileal conduit and external appliance
- Diane 20+ years since surgery and still doing well
Cystectomy with continent internal reservoir
Cystectomy followed by neobladder
Finding Help And Answers From Another Bladder Cancer Survivor
After Micheles diagnosis, she wanted to find others who understood firsthand what she was going through as a woman with bladder cancer. While the urology center she went to had a support group, it was composed almost entirely of older men. While it was great to know others were out there who went through bladder cancer and made it, it was also hard to fully relate.
I wanted to talk with other women my age whod also been diagnosed, she says. However, she wasnt sure where to turn.
Next, bladder removal surgery, which is also known as a cystectomy, was recommended by her doctors. Suddenly, she was facing another considerable challenge. Being diagnosed with bladder cancer was a shock, says Michele. Getting my bladder removed was even more of a shock.
Micheles medical team advised she had two options after bladder removal based on her age and activity level. The first option would be to have urostomy surgery, which would involve wearing an external ostomy pouch to collect urine. The second option was having a procedure to create an Indiana pouch, which is an internal pouch that stores urine like a bladder.
Although the recovery time would be longer, she decided getting an Indiana pouch was the way to go.
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Doctor Visits And Tests
Your schedule of exams and tests will depend on the stage and grade of the cancer, what treatments youve had, and other factors. Be sure to follow your doctors advice about follow-up tests.
Most experts recommend repeat exams every 3 to 6 months for people who have no signs of cancer after treatment. These are done to see if the cancer is growing back or if there’s a new cancer in the bladder or urinary system. Your follow-up plan might include urine tests, physical exams, imaging tests , and blood tests. These doctor visits and tests will be done less often as time goes by and no new cancers are found.
- If your bladder hasnt been removed, regular cystoscopy exams will also be done every 3 months for at least the first 2 years.
- If you have a urinary diversion, you will be checked for signs of infection and changes in the health of your kidneys. Urine tests, blood tests, and x-rays might be used to do this. Your vitamin B12 will be checked at least once a year because urinary diversions made with your intestine can affect B12 absorption. Your doctor will also talk to you about how well you’re able to control your urine. Tests will be done to look for signs of cancer in other parts of your urinary tract, too.
Some doctors recommend other lab tests as well, such as the urine tumor marker tests discussed in Can Bladder Cancer Be Found Early? Many of these tests can be used to help see if the cancer has come back, but so far none of these can take the place of cystoscopy.
Join A Cancer Support Group
Joining a support group can help you overcome feelings of loneliness and learn new coping skills. You’ll soon realize that many people are going through the same thing as you, and they understand how you feel. There are different types of support groups out there, from formal meetings that focus on learning about bladder cancer to informal gatherings that may include family or friends. You should also consider speaking with a counselor individually if you feel more comfortable with one-on-one interactions. Either way, there’s no need to cope with cancer alone.
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Finding The Right Catheters For Cathing An Indiana Pouch
After the surgery, Michele was out of work for 12 weeks. The first few weeks post-surgery were spent recuperating in the hospital and later at home.
Next, she would need to learn how to start using catheters almost immediately. Luckily, 180 Medical was there for all her catheter supply needs.
Michele says, 180 Medical has given me a sense of freedom. They gave me samples of different catheters, which was wonderful. I was able to try multiple options and see what fit my needs best.
After trying out a few different options, Michele decided on the CompactCath LITE Catheter. With what I chose, I can now be discreet with my need to use catheters as I was not before. A weight was lifted from my shoulders.
The pre-lubricated CompactCath LITE has a one-of-a-kind discreet design, which Michele says fits in her hand perfectly. I can walk down the hall with it in my hand and still be discreet. Also, it has a no-touch protective sleeve that covers the entirety of the tube, which may help reduce the risk of infection from hand contamination.
Tracey Emin Praised For Frank Disclosure Of Bladder Cancer
Charities commend artist for openness about experience with disease rarely discussed
Cancer charities have praised Tracey Emin for raising awareness of bladder cancer in a frank and honest interview in which she revealed she was in remission after undergoing surgery this summer.
Emin, who was nominated for the Turner prize in 1999 and is one of the most famous artists of her generation, said in an interview with Artnet that she had been diagnosed in the spring and had surgery two months ago.
In an interview with The Times, Emin said: It was squamous cell cancer, which means its really rapid, really aggressive. Its known as bad cancer. Her doctors told her they had to act fast and remove her bladder, uterus, fallopian tubes, ovaries, part of her colon, urethra and part of her vagina.
A team of 12 surgeons operated on Emin for six and a half hours. I managed to keep all of my clitoris. Not that its working. But they had to cut away a whole side of the vaginal wall and sew it back together, so its really, really sealed, she said. She will now undergo a series of therapies and dilation.
Bladder cancer is the 10th most common cancer in the UK, according to Action Bladder Cancer UK. Around 50% of those diagnosed, or more than 5,200 people a year in the UK, die of the disease, often because it is diagnosed late.
The artist has been commended for being open about her harrowing experience with a common form of cancer that is not often spoken about.
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If The Cancer Comes Back
If the cancer does recur at some point, your treatment options will depend on where the cancer is located, what treatments youve had before, and your health. For more information on how recurrent bladder cancer is treated, see Treatment of Bladder Cancer, by Stage.
For more general information on recurrence, you may also want to see Understanding Recurrence.
Types Of Bladder Cancer
The main types of bladder cancer are named for the type of cells that become cancerous. The most common is urothelial carcinoma , which begins in the cells that line the inside of the bladder.
Squamous cell carcinoma and adenocarcinoma are much less common.
Stage 0: Cancer stays in the inner lining.Stage I: Cancer has spread to the bladder wall.Stage II: Cancer has reached the muscle of the bladder wall.Stage III: Cancer has spread to fatty tissue around the bladder and possibly certain nearby lymph nodes. It may also have spread to the prostate in men or the uterus or vagina in women.Stage IV: Cancer has spread to the pelvic or abdominal wall, lymph nodes, or distant sites such as bone, liver, or lungs.
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For Patients With A Urostomy
If you had a radical cystectomy and now have a urostomy, you might worry even about everyday activities at first. You might have to alter some of your daily routines because of changes in how you urinate. Other issues such as having sex might also cause concerns .
Its normal to have worries and concerns when adjusting to such a major change. But its important to know there are health care professionals who are specially trained to help people with their urostomies. They can teach you to take care of your urostomy and help you cope with the changes it brings. You can also ask the American Cancer Society about programs offering information and support in your area. For more information, see our Urostomy Guide.