Went to the doctor and mentioned some episodes of blood in my urine after heavy exercise which I had out down to Runners Bladder. Urine Sample followed by CT scan followed by TURBT and biopsy results show T1 tumour. 6-week course of BCG starting in 6 weeks’ time.

Which symptoms have you experienced and how have you dealt with them?

Blood in urine – kidded myself that it was Runners Bladder. Urgency to pee – put it down to getting older and the fact I drink lots of water.

What advice would you give to others who may be newly diagnosed with bladder cancer?

Do lots of research, ask lots of questions, keep positive attitude and don’t be afraid to share your experiences with others. If I can help one other person catch it early by sharing my story then I will have made a positive impact.

Have you reached out to other bladder cancer patients or been part of a bladder cancer support group? 

I have joined many forums around the world and have connected with others on a similar journey in the USA and UK through Twitter searches. I am hungry for tips on how to face this journey and keen to offer support to others in any way I can. I will advocate for men’s health more so than ever before.

After I did a biopsy because a ct scan showed a tumour in my bladder. My urologist gave me the results of a cancer phase T1. It was a shock to me and my family. I didn’t have any symptoms that made me think of bladder cancer. I went to see a gastroenterologist for chronic constipation and by doing a sonogram that’s how he saw my tumour in the bladder.

Therefore I want to bring awareness to African people to check themselves and inform them about bladder cancer. I felt lucky enough to check myself to find out for another bigger problem than my constipation.

Which symptoms have you experienced and how have you dealt with them?

The only symptom was incontinence to hold before rushing to the bathroom, for a little moment and it kept me asking questions about why but the only thing I could think was menopause. I tried not to drink any water so I don’t get any accidents.

Tell us about your experience with bladder cancer treatment. How long did it last? Did you experience side effects? 

As I just found out in July, I am at my 4th treatment. So far so good until yesterday’s ones as I felt a lot of pressure as treatment was going inside. I asked the nurse to slow down, and then later in the day, I felt a lot of fatigue, back pain and some bleeding. Also since the second treatment, I developed some rash (eczema) in some parts of my body. After 48 hours it goes away but comeback after every treatment. I also noticed my appetite is bigger. Some quick weight gain around my thighs and breasts.

What advice would you give to others who may be newly diagnosed with bladder cancer?

I would ask them to keep up their faith and have a positive mindset. To seek help and resources. Since my diagnosis, I only research bladder cancer and how to help myself heal from it. It’s good to communicate about it and get awareness on how to heal and help others heal.

I was mindblown when I found out that I had bladder cancer. I did not know how to react, it was very hard. My family still does not know yet. I’m waiting to finish my studies to find out if it metastasised or not.

When it all started, I had no symptoms, just some little bleeding in the urine, which according to my gynaecologist was due to a benign myoma in the endometrium. Besides that, I had no symptoms at all. I could work normally. The diagnosis came after I decided to change doctor: I went to a urologist because I felt that what my gynaecologist said was not correct. A sign, I put in a tampon for a urine culture and I bled just the same. Tests, ultrasound scans of the urinary system, cystoscopy and CAT scan of the abdomen. It took 1 year to reach the diagnosis which was bladder cancer.

What advice would you give to others who may be newly diagnosed with bladder cancer?

Wait for the best possible treatment.

This stock image is provided for illustration purposes.

Tell us about how you received your bladder cancer diagnosis?

My doctor finally referred me to the Urology dept at the local hospital. It took 2 years for the hospital to triage me, but once they did, I was scheduled for a rigid cystoscopy almost immediately. On the day of the scope, my Urologist took me aside to let me know they had found a cancer marker in my cytology test. Two weeks later, I received the news that I had NIBC and they’d be starting me on BCG. I cried for the next 24 hours and then was able to pick myself up and face the truth.

Tell us about your feelings and emotions at the time when you received your bladder cancer diagnosis?

I had never done any of the things normally associated with BC (smoking, being around chemicals) and had never heard of BC. My diagnosis shattered my world for a few days, but after I had time to come to terms with my new reality, I set out to discover ways that I could turn my tragedy into something that might benefit others.

Tell us about your experience with bladder cancer treatment? 

My first round of BCG was a disaster. I only got through one treatment and had such a bad reaction that I spent 3 days in hospital. My local urology team referred me to a major city hospital for a review with a RC in mind. This news was more shattering than the initial diagnosis and it took me several days to overcome my sense of loss and grief. When I eventually got an appointment with the uro-oncologist, he let me know that RCs were not a preference for patients with NMIBC and that he wanted to re-try BCG at half strength. After another rigid cystoscopy and bladder irrigation, it became apparent that I had a highly overactive bladder. I was referred to a pelvic floor physio who gave me some exercises the relax my bladder and also put me on a restricted diet, eliminating anything that might irritate my bladder. Once I restarted BCG, I was in a much better place and with the help of Endone, Targin and Oxybutynin, I was able to tolerate the full six-week BCG round. I’m not just waiting for things to settle down before the next scope, to tee if the BCG has worked.

What advice would you give to others who may be newly diagnosed with bladder cancer?

Find as many ways as you can to turn your focus onto other people and things outside of yourself, An inward focus turns you into a victim and coping with the pain and anxiety is difficult. An outward focus helps pass the time, keeps you focus off the pain and give you the opportunity to be “in charge” of your situation rather than it being in charge of you.

Have you reached out to other bladder cancer patients or been part of a bladder cancer support group? 

Yes, I’m a member of multiple BC support groups. I share my story with them regularly. I also share my story and journey with many other FB groups not associated with BC, as part of my BC awareness efforts. The groups I am in follow my progress closely and I share everything with them, including the wins, setbacks and pain.

It has been a long journey. I completed my bladder removal in March 2022, and am still recuperating. Getting stronger every day but I’m not rushing myself. I am good with the ostomy bag but am trying to fix a hole in my incision and where a drainage tube was. It has been a struggle but I am doing my best. I also have breast cancer and have to get a new lump checked out. Pray for me.

You have to maintain positivity every single day. You can’t let yourself get down and depressed. Stay strong!

What advice would you give to others who may be newly diagnosed with bladder cancer?

Get a second opinion and your insurance should cover it. Make sure you know every option available before you have surgery. I postponed it for a month while I got my mind wrapped around it.

It was traumatic at first but when I realized the tumour had to be removed I remained calm and looked forward to surgery and treatment. My wife and daughter helped me cope with bladder cancer.

I never felt any pain or discomfort, then one day I urinated blood and clots. I was in shock, I thought it was something I ate. The bleeding continued throughout the day. The next morning I went to the emergency and they detected a mass in my bladder. Two days later I had a cystoscopy.

What advice would you give to others who may be newly diagnosed with bladder cancer?

As soon as you notice blood in your urine, head to the emergency, the sooner it is diagnosed, the easier it will be to treat.

This stock image is provided for illustration purposes.

I was diagnosed with bladder cancer when I was 38. I had been experiencing urgency and blood in my urine for 10 months. I’m a mum of two young boys and being told I had cancer was devastating.

At the time, I was alone when I was told I had cancer due to covid restrictions. I was unable to have any face to face appointments prior to my diagnosis. I was having a cystoscopy and was told there and then that it was cancer.

What advice would you give to others who may be newly diagnosed with bladder cancer?

Be kind to yourself. Whichever way you feel is ok. None of us knows how we will feel when we are told we have cancer. The support I had from my family and friends kept me going, I will be forever grateful for that.

Had a suspected UI and after a few GP visits (and antibiotics) the problems continued to develop and I was then asked to do tests for STIs, even though I was still showing signs of an infection in the bladder. The pain got worse and I started to develop abdominal and back pain so went to A&E where they suspected I had a kidney stone in my bladder that needed moving. After an ultrasound and a couple of CT scans I was told there was a lump in my bladder and I was being emitted for an operation to remove it. About 10 days after my operation I was given the diagnosis of state 2 non-invasive bladder cancer.

Which symptoms have you experienced and how have you dealt with them?

Physically I struggled to fully hold urine after my operation but am much better now, it took me a few months after the hospital to not pass blood if I held urine in (due to work meetings etc), it took a while for me to be able to sit down for long periods without pain or discomfort when urinating. Mentally, I have really struggled. I’ve found it incredibly difficult to meet people of a similar age who have gone through it, I have felt very low and struggled with feelings of isolation and loneliness due to what happened and that it happened during covid, so I was on my own throughout, etc.

Tell us about your experience with bladder cancer treatment? How long did it last? Did you experience side effects? 

Within 4 days of going into A&E I had my op to remove the tumour. I was discharged and then back in A&E 2 hours later in agony due to pain. I was under a lot of stress and it upset my asthma and gastric health. No other additional side effects other than what was mentioned above.

What advice would you give to others who may be newly diagnosed with bladder cancer?

Allow yourself time to acknowledge what’s happening to you, explore how it makes you feel, and allow yourself to have bad days. That asking for help doesn’t make you any less ‘strong’. Normalise bodies too, bladders shouldn’t be embarrassing topics, and you shouldn’t feel ashamed or embarrassed about anything that is or has happened to you.

Have you reached out to other bladder cancer patients or been part of a bladder cancer support group? 

Yes, I go to a bladder cancer group in my nearest city every 3 months. They are great and have been helpful in giving me advice and peer support.

This stock image is provided for illustration purposes.

In July 2021, I had a UTI, and my GP gave me the usual dose of antibiotics; however, I still had pain in my lower tummy and back, plus when I went for a wee. After five sets of antibiotics, my GP finally sent me for an ultrasound. The ultrasound showed a polyp in my womb. They also looked at my bladder, but they could not see anything on the ultrasound. This was August 2021, so I went for a failed treatment to get a biopsy from my womb, which was very painful, but it may have saved my life as the tumour in the bladder started to bleed. I was shocked by the blood and back on the phone to the doctors but was told this was the polyp. I told them that it was in my pee. I was booked in for the polyp to be removed under general anaesthetic; however, I was already in A&E before the operation.

I remember it was the 4th of October, and I was bleeding so heavily that I thought something in my bladder had burst. The accident and emergency doctor was excellent, and I guess he did save my life. He sent the sample off, and in 48 hours, my doctor called and referred me to a bladder specialist. He even said, ‘it was a good job you kept on’. I will never forget the 26th of October when I saw the tumour. I had to go alone, and I just cried in the car afterwards. I was in shock. Everything moved very quickly, with CT scans, blood-test etc. And then there was the cancellation of our fantastic holiday after two years to Barbados, again. My TURBT was booked for the 16th of November. I was back in the hospital only a couple of weeks after the polyp was removed. They removed a 2cm tumour, aggressive and ready for a fight. I recovered quickly and felt fine. I got home to see my discharge notes say, ‘Secondary metastasis cancer’. Cancer had not even been mentioned, and I was in shock. I called my doctor the next day, and he told me, “Don’t worry”, but of course, I was worried like hell. I was sure I was going to die! Dr Google told me that! My cancer spread straight away.

On December, my husband and I went to see a nurse; everyone kept telling me that nurses don’t give bad news. But I was told I had muscle-invasive bladder cancer, which had already spread. I cried for two days. All very small but still secondary cancer. Something you can only hope will stay stable. I went from having a polyp to advanced bladder cancer in 1 month. I started my chemo journey in January 2022. My oncologist is fantastic, and I love him; he is so positive even when I am not. After a heart scan, I had my first cycle, and it was hard. The first session was eight hours, followed by a 2-hour session for one cycle a week later. Eight hours of chemo is hard, and I was floored, but I got up every day, showered and sorted myself out. Maybe a few naps. I had my next session in February 2022, so the break lets me feel a bit more human. Everything tasted terrible, I had a bad cough, and my back was hurting, but all that seems to have passed now after some antibiotics, and now my doctor rings me almost weekly. I also got terrible indigestion, which again some miracle tablets sorted out. I must make sure I take the meds on time, and my husband is doing his best with a busy job to cook for me and clean.

I have amazing friends and support with my husband and adult daughter nearby. I have my down days as it is hard for me as a fitness instructor. My last fitness class was in December 2021, and now it takes me a while to walk up the stairs, but I am getting into a pattern of going for a walk every morning and doing some easy Pilates for my back. am scared, but I am a fighter, so watch this space!

What advice would you give to others who may be newly diagnosed with bladder cancer?

Do not rely on Dr Google – look for credible sources of information (for example a patient organisation).

I was having UTI symptoms when I started seeing blood in my urine I was seeking out doctors and answers. I kept getting told I had a UTI and was given antibiotics. In less than a year I went from symptoms to having a stage 4 tumor removed.

I was misdiagnosed more than once. When I finally got a cancer diagnosis the cancer institute did not want me to start chemo because I didn’t have insurance.

What advice would you give to others who may be newly diagnosed with bladder cancer?

Get as many second opinions as necessary and don’t stop until you are heard. You are your own best advocate

Receiving the diagnosis was a very scary experience for me. I had no signs or symptoms of bladder cancer, to begin with. In December 2020, I went to the hospital because of a kidney stone and got diagnosed with bladder cancer, as they found a tumour. The tumour was muscle-invasive at this time, so the doctor started me on Bacillus Calmette-Guerin (BCG) treatment. After my first round of BCG, they had to remove two more tumours, and I then had a second round of BCG during the summer of 2021. In November 2021, I had a cystoscopy that was clear, and I had some maintenance BCG in February 2022. Just in April of the same year, I had a second clear cystoscopy. I have been in really good health since the diagnosis, nothing has changed there, and I will just keep battling.

I had no signs or symptoms of bladder cancer, so needless to say it caught everyone off-guard. It was also very surprising to get the diagnosis because of no symptoms. The only reason why they found my tumour when they did was because of the CT scan for my kidney stone.

As a family, we all stayed very positive, and I am so grateful for all the support they have given me.

What advice would you give to others who may be newly diagnosed with bladder cancer?

Stay positive, have a good diet, and exercise. That has helped me during my bladder cancer journey.

I was diagnosed at the beginning of the Covid-19 pandemic. Not a great time. I went through testing, procedures, and diagnosis alone or via phone. Everything felt extremely unsafe, more than just worrying about Covid as everyone was. Scared but everyone was scared so it wasn’t easy to talk about my troubles. Difficult for my adult daughter as she wasn’t able to come with me.

I was fortunate that I had some blood in my urine. This was post-menopausal so something I thought I should get checked out. I thought that it could be a hormonal issue. I had a pelvic exam, then an ultrasound, then a vaginal ultrasound, then another ultrasound, then sent to a urologist specialist, where I had a CT scan, then MRI, then TURBT, and another CT scan… then I was diagnosed with plasmacytoid bladder cancer which is a rare, aggressive variant. I was transferred to a top urologist surgeon and an oncologist. Started chemotherapy 3 months later (late due to Covid delays in hospitals), which was for 4 months. Then 6 weeks later I had a radical cystectomy, with a urostomy for life.

What advice would you give to others who may be newly diagnosed with bladder cancer?

Talk to others, Who have been through it. I was too isolated. I knew the information but I needed to know more about actually dealing with it. It was harder than I expected. But you do get through it. And it’s okay.

This stock image is provided for illustration purposes.

Suffered for months before diagnosis, doctors kept treating me for bladder infections and did not take my symptoms seriously until I started to demand more tests. I knew something was going on inside my body that needed much more attention than another round of antibiotics. I was a new mom, it was hell. Finally got a diagnosis, and had my first turbt. It came back less than 2 years later. Had my second turbt. Currently in Bacillus Calmette-Guerin (BCG)treatment.

I experienced constant bladder cancer infections. Debilitating discomfort to the point I was missing time from work, and family gatherings, it was affecting my ability to be present for my child. Way too many rounds of antibiotics. Blood in the urine. By the time I had my surgery (which ended up being an emergency procedure) my urine had so much blood in it you couldn’t see through the cup. It took way too long for a diagnosis because it’s not ‘statistically common’ for a 27 year old female to develop bladder tumors. I was overlooked and dismissed for an unsettling amount of time. Until I started to not take no for an answer and demanded to be taken seriously.

What advice would you give to others who may be newly diagnosed with bladder cancer?

Access the most suitable treatment for you, and also reevaluate your lifestyle and what you eat, your overall diet. It is important to give more consideration into what you put in and around your body.

This stock image is provided for illustration purposes.

Tell us about the symptoms you have experienced and how you dealt with them?

My father experienced symptoms such as blood in urine and urgency to go pee frequently. The symptoms started one year before the bladder cancer diagnosis fell. They were dismissed as UTI by our regular GP. Yet, when they returned a year after, the replacement of our regular GP asked for more tests, this is when stage 4 invasive bladder cancer was diagnosed.

Tell us about your feelings and emotions at the time when you received your bladder cancer diagnosis?

My dad, my hero, was the one with the bladder cancer and he was ready to fight (chemo, surgery, etc…) you name it… He was feeling great and definitely ready to beat this cancer! He had a very positive attitude and was feeling confident with the oncologist’s strategy.

Tell us about your experience with bladder cancer treatment?

My dad received strong chemotherapy starting in October 2013 and had surgery to remove his entire bladder in early 2014. The side effects of chemo were harsh and he lost a lot of weight. The surgery was successful and he was able to live a “normal” life for a few months.

What life changes have you mde since diagnosis? 

After 3 years of treatments, my husband had a radical cystectomy and now six years later, he is living life to the fullest with almost no complications or inconvenience. Having his bladder removed was the best thing for him and he now enjoys a robust quality of life at age 94!

Which symptoms have you experienced and how have you dealt with them?

My husband’s symptoms were a dull pain in the abdomen and blood in the urine.

What advice would you give to others who may be newly diagnosed with bladder cancer?

Ask a lot of questions, exhaust all new therapeutics, especially immunotherapies and new combo therapies, explore and insist on clinical trials, but if it comes to radical cystectomy being the only option, know that it can change your life for the better. Don’t be afraid of it!

Have you reached out to other bladder cancer patients or been part of a bladder cancer support group? 

Yes. The Greenberg Bladder Cancer Institute at Johns Hopkins hosts educational and support group programs, and a special support group for women (only) with bladder cancer. The talks are recorded and available on the website. The “Grand Round” talks are presented monthly (save for a break during the summer): bladdercancer@jhmi.edu