Sharing Your Bladder Cancer Journey
Thank you to everyone who shared their experiences with this story. We appreciate your contributions, all of which help those who are new to the community to learn more about the bladder cancer journey. Tell us about your experience in the comments below, or with the community.
The Bladder Condition in America survey was conducted online from January 2020 to May 2020. The survey was completed by 589 people.
What Was The Initial Cancer Diagnosis
My initial diagnosis was transitional carcinoma .
On December 17, 2007 I had my first TURBT. He removed three fairly good-sized tumors. He followed up with 6 weeks of BCG. I got the flu-like symptoms, nausea, and fatigue but went back to my classroom the day after each treatment. I remember that the cafeteria staff was so very special that they always had a cup of chicken consume for me because that was about all I could keep down. My students were wonderful too. I found out later that the morning of my surgery, the students refused to go to class until they all held hands and prayed for me and these were kids with a lot of problems of their own. Yet, they took the time to pray for me. I was so touched.
Well, my going back to teach the day after my BCG treatment came to a quick end when I fainted in my classroom. When I called the doctor, he said he was not aware that I was returning to work the very next day and planned on sending a message to the school stating that I would require at the very least 2 days off with each treatment and more if needed. Unfortunately, I soon developed an allergic reaction to the BCG.
Grateful For My Team But
My only consolation is that I think I have great doctors here in NY. However, having these health issues, along with our isolation due to Covid everywhere, has made the last two years so incredibly difficult. I just pray everyday that the BCG has done its magic. I also understand that this journey never really ends so I am doing my best to live with it. After all, there is no other choice, as you all know.
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Patients Experience Of Diagnosis
Patients experience of diagnosis theme captures patients reported experience of being diagnosed with BC, including presenting symptoms, diagnostic process, pre-treatment consultations and the treatment decision-making process.
Typical symptoms of BC were visible haematuria and altered urination patterns . Patients described haematuria as deceptive due to its painless and inconsistent nature . The lack of pain and understanding about BC led to a delay in seeking help . When help was sought, some felt frustrated that their symptoms were trivialised and misdiagnosed. For example, women presenting with blood in their urine were often met with are you sure its not just your menstrual cycle? , reflecting the typical delay in referral for female patients with BC .
A typical response to diagnosis was shock, upset and devastation , followed by a fear of treatment and an intense desire for a speedy intervention . Some described feeling scared to death and thought of their diagnosis as a death sentence : youre sitting there thinking Im going to die . Hilton and Henderson described this experience as unknowingeverything that patients know about their health is suddenly called into question and they may now worry that their overall health will deteriorate .
Treatment decision making
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.
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Real Bladder Cancer Patient Stories Illustrate Their Journey
Bladder Cancer is the 10th most commonly diagnosed cancer in the world with 570,000 people diagnosed each year. Around the world, the 1.7 million people living with the condition have their own journeys and personal bladder cancer stories to share.
This year the World Bladder Cancer Patient Coalition wants to spark conversations that drive awareness around bladder cancer by honing in on bladder cancer symptoms, such as blood in the urine, and the challenges they bring during Bladder Cancer Awareness Month. Early diagnosis and seeking medical advice and care without delay can increase long-term survival. If caught in its early stages the 5-year survival rate for bladder cancer can be up to 90%.
Below we are honoured to bring to you two real patient stories where they share their different personal journeys. These stories are a powerful reminder of the impact of bladder cancer. Bladder cancer patient stories also help raise awareness of bladder cancer and highlight the urgent need for new treatments and research, improved care and support for those living with bladder cancer.
Living With Metastatic Bladder Cancer: Joeys Journey
Joey sold his business and felt like he was living the American dream when his life was turned upside down in 2019. He was diagnosed with metastatic bladder cancer.
I remember I was trying to call my wife to talk to her, recalls Joey.And then I couldn’t speak.
In the United States, the average age for a bladder cancer diagnosis is 73. Joey was 45 years old at the time of his diagnosis. Adding to his shock, he went into immediate bladder removal surgery. After additional treatments, his oncologist recommended that he check himself out of the hospital because he likely had only weeks left to live.
“I thought, No, doctor, that’s not true, says Joey.I’m going to beat this thing.”
Joeys determination seemed to pay off when just two weeks later his oncologist called him back and said a new targeted therapy was available. He started it immediately.
I’m still considered stage 4 metastatic bladder cancer, says Joey.But in general, I feel pretty good today.
Joey says when hes asked about bladder cancer, he tries to talk about how the many treatment options and ongoing research helps create what he thinks is much needed more hope.
Watch the video above to view Joeys full story.
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Bladder Cancer Survivors Story: In His Own Words
50-year-old Chris Lee of Newmarket, Ont. works in hematology and began his career in the laboratory at Womens College Hospital in 1989. He moved to the Sunnybrook campus in 2010 when the Women & Babies Program relocated to the Bayview site. In this post, Chris talks about his health journey and struggle with cancer, as well as his fundraising efforts.
The Bladder Cancer Journey
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A diagnosis of cancer, regardless of the type, is a journey. From the prognosis to the treatments and post-follow-up care, each person has their own experiences.
In our 2020 Bladder Cancer in America survey, we learned more about this country’s sixth most common type of cancer. The survey helped us learn what people with bladder cancer think about:
- Lifestyle factors
To gain further insight, we posed a question in our Facebook community group. If you could describe your bladder cancer journey in 1 word, what would it be?1
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If Youve Been Diagnosed With Bladder Cancer Seek Out A Team Of Experts
Most people require a combination of therapies to treat bladder cancer successfully. The best plan is different for each person, says Dr. Donat. This customized treatment approach requires the expertise of multiple specialists.
At MSK, most people with bladder cancer meet with a urologic surgeon and medical oncologist as well as a radiation oncologist when needed. This close collaboration helps ensure that MSK patients receive the best care possible. The benefit of MSK is that we bring world-class expertise in each type of treatment to bear for every individual we care for, and we are on the forefront of developing new treatments, says Dr. Donat.
Its also important to know that expert bladder cancer care means not only lifesaving treatments but preserving your quality of life and, if possible, your bladder. We want all of our patients female and male to feel their best after bladder cancer surgery, says Dr. Donat. As surgeons, we do that through a variety of techniques, including minimally invasive approaches and other specialized techniques to preserve or reconstruct the bladder and to maintain sexual function.
Stories That Inspire: Bladder Cancer
submitted by: Sara G., Little Rock, AR
My grandkids call me Twinkle, and I am a 63-year-old retired teacher who now enjoys gardening, reading, and my cats. I have two adult sons and one husband, to whom I have been married for 40 years. In my life, I enjoyed teaching, delicious food, and traveling. I have now been dealing with bladder cancer for over ten years.
How did bladder cancer enter your life?
For me, I knew something was wrong when I could not stop peeing. After a few weeks of constant bathroom trips, the intense burning began. I quickly managed a doctors appointment, and he gave me some antibiotics for a suspected urinary tract infection. After a few days of zero improvement, I called back and was given a different antibiotic to try. Still no changes, and my symptoms were worsening, as I was peeing even more. I made another appointment at the office I go to, but with a different doctor. This doctor told me to try cranberry juice. I was beginning to feel lost and sort of crazy. At this point, I asked to be referred to a specialist, which seemed to anger the doctor- who clearly did not agree.
Needless to say, the cranberry juice did nothing, and the searing pain with each bathroom trip was more than I could handle. I saw a local urologist a few days later, who immediately began a rigorous testing schedule of ultrasounds, PET scans, and an MRI. While all this was happening, I was still peeing constantly.
How has bladder cancer changed your life?
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Request An Appointment At Moffitt Cancer Center
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Cancer Spreading To The Kidneys
This maintenance therapy continued for 5 years, until the doctors found that the cancer had spread to both of my kidneys. They recommended that my 2 kidneys be removed, which would mean I would have to go on dialysis for the rest of my life. I have had family members who were on dialysis, and I can assure you it is not a pleasant road.
For our peace of mind, my wife and I sought second and third opinions. We spent the summer traveling to different cancer centers at several universities, including Cornell University, NYU, Mount Sinai Hospital, and others. Every one of these cancer centers had a different assessment of my situation and a different recommendation.
Finally, the doctors at Winthrop University Hospital, who had successfully treated me before, said that I should only have my left kidney removed and leave the right kidney, which was still functioning at 80% capacity. They removed the left kidney and inserted a tube from my bladder directly into the right kidney. I then underwent 6 more rounds of BCG therapy, hoping to rid my body of any remaining cancer.
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Take Steps To Reduce Your Bladder Cancer Risk
The best way to lower your bladder cancer risk is to quit smoking. Smoking is the number one risk factor for bladder cancer, says Dr. Donat. There is some data to suggest that women metabolize carcinogens from smoking differently than men. In fact, woman may have a 30 to 50% greater risk of bladder cancer than men who smoke at comparable levels.
Coping With Emotional Side Effects
When you first receive a cancer diagnosis, you might feel like your life just went out of control because:
- You’re not sure if you’re going to survive.
- Doctors use medical terms you’re not familiar with, and it gets confusing.
- Treatments and doctor visits disrupt your normal routine.
- You feel lonely and helpless.
- You can’t do things you enjoy anymore.
Despite feeling out of control, try to remember that there are helpful steps you can take. First, it can help to learn all you can about your cancer. Ask your doctor all the questions you need to in order to understand the diagnosis and treatment of bladder cancer.
Some individuals find that staying busy helps. If you have the energy, why not take part in certain activities like crafts, music or learning something new?
Many cancer patients feel sad. They believe they’ve lost their good health and that the life they used to have before their disease is now over. Feeling sad is a normal response, even after completing treatment. It can take time to accept and work through all the changes you’re going to have to make.
Sadness can drain your energy, and you may feel fatigued or not want to eat. These feelings lessen or go away over time for some people. For others, however, they can become stronger and get in the way of everyday life. When this occurs, it could be depression. Cancer treatment can add to the issue by changing how the brain works. Fortunately, doctors can treat depression.
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Four More Tips For Your Journey
KEEP YOUR APPOINTMENTS
Never put off a doctors appointment or test, even if your check-ups are clear. If you are scheduled for tests or check-ups every three months, six months or every year, it is critical that you keep the appointments. There can be a high rate of recurrence and its important to catch recurrence when it is treatable.
MAINTAIN A HEALTHY LIFESTYLE
Find out what you can do to improve your health and strengthen your immune system. This may include asking for a referral to a nutritionist or dietitian who can help you with your diet. A basic exercise routine is also a good idea.
UNDERSTAND YOUR TEST RESULTS
When you have any tests or blood work done, be sure to get copies of the results and keep them in a safe place. Ask what the test results mean or research the terms used in the results, so you understand them.
Reach out to other cancer survivors. Your experience will help others. Thats weve all done here at Bladder Cancer Canada its like becoming part of a warm, supportive family.
Thoughts On My Journey Starts Today
It is very scary to trust a Dr. I also had a really bad Dr. that told me I had a urinary tract infection for year. I was lucky I had a friend tell me I needed to see a urolist that this was not normal and sure enough I had high grade bladder cancer. If it were not for my friend I dont know how things would have gone. Just know the beginning is very scary and like your life took a stop. But after you gain all of the knowledge you need you know that with the right Dr and asking the right questions you can overcome this. I recommend going to an integrated Dr as well as regular Dr. I was put on a high dose vitamoin trial. I went into remission for 5 years but recently had a small spot. I did go off my vegan and juicing diet so I cant say enough about the importance of no meat, sugar, fruit or carbs. Drink a ton of water, lemon water in the morning and wheatgrass twice a day and green juice twice a day and detox infrared sauna, high Ph water, epson salt baking soda baths. You have to do your part. Just know the goal is to get your immune sysytem up to par and keep your body alkaline.
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