Dementia and Bladder Cancer

Mum was diagnosed with Dementia in Oct 2019, things were getting a little confusing for her for some time prior. Sadly her awareness and vigilance to what was to come was challenged.

I noticed considerable swelling to her right leg and ankle, followed this up with her GP and later her doctor at Peter Mac Cancer Hospital. Over previous years mum survived vaginal cancer and lymphoma and therefore was a continued outpatient at Peter Mac. CT scan raised by her haematologist raised concern on her bladder, followed this up with urologist and high grade bladder cancer was diagnosed and sadly penetrated the muscle wall in September 2020.

Initial surgery to remove the tumor in late September was performed and at this time the urologist recommended a full bladder removal. Seeking a second opinion led to the follow-up of a pet scan, lymph node exploratory and later the removal of a lymph node to confirm if the cancer had spread. Thankfully it had not spread, however the outcome did confirm a full bladder removal was necessary.

Mum experienced extremely frequent urination throughout the day and in particular night as she lay in bed, burning and blood in the urine not relenting. In December mum was admitted to hospital, underwent 9 weeks of hospitalisation which included numerous procedures including nephrostomy bags and finally full bladder removal.

This exhausted her immensely and unfortunately her dementia baseline declined rapidly given several procedures each involving a general anaesthetic. Surgical, nursing and allied health team worked tiredly, however sadly mum lost her fight on February 13th 2021.

What we now know and learnt….
– Mum had intense radio therapy to the pelvic area 28 years prior, this was raised as the possible side effect which may have triggered the bladder cancer.
– Recommend automatic screening for those who have undergone radiotherapy to the pelvic area.
– Awareness and screening similar to bowel cancer for over 50’s and in particular for our aging community challenged with Dementia is most certainly needed to assist in early detection.

RIP mum x
Maria Marinaccio

RC in October

I was diagnosed in Dec 2018. Throughout 2019 I had BCG treatment which was unsuccessful getting recurrences high grade superficial. In 2020 I had 6 rounds of gemcitabine had more recurrence. I decided to have RC in October now going well with a stoma getting results next week.

Lance Shakespeare

Recommendation for Melbourne Urologist?

Hi I have been diagnosed with bladder cancer, and have started BCG treatment – so far it seems to be going quite well. Reading the (mostly USA based) forums to try to improve my knowledge of the disease – it seems to me that in the US the urologists often team up with oncologists in determining your treatment options – but (from my admittedly very limited understanding) not so much in Australia – where the urologists tend to handle it all. I’m quite keen on getting a second opinion on my treatment – no issue with my current urologist but there is a lot at stake for me (!) – does anyone have a recommendation for a Melbourne based uro-oncologist, or perhaps a urologist specializing in bladder cancer? With thanks to anyone able to help!


Cancer shock

I was diagnosed in February 2020 with Urothelial Carcinoma in my left kidney. I was 55 years old, female, very fit, never smoked and rarely drank.

My husband and I were booked to go on a cruise the coming Saturday, but my oncologist said chemotherapy had to start straight away.

Late 2019 i had consistent lower back and side pain, I left it for a few weeks, as I was lifting weights at the gym, and just thought it was a pulled muscle.

I decided that I needed to get it checked, went to my GP, who ordered a CT scan with contrast.


Large cell neuroendocrine tumor in the bladder.

Hi everyone, my father has recently been diagnosed with large cell neuroendocrine carcinoma in the wall of his bladder. He is due to have a radical cyctectomy which will include taking the prostate and neighbouring lymph nodes next Tuesday. His treatment options afterwards are very slim as he has acute renal failure which he was born with and has dialysis three times a week. Would like to know if there are any treatment options for patients with kidney disease and LCNEC in the bladder?


2018 Bladder Cancer Diagnosis

I was diagnosed on the 22nd May 2018, I was 50 years of age. First and only symptom was haematuria. I went to my GP the day after this symptom, had a ultra sound 5 days after and I was diagnosed with high grade non muscle invasive cancer. My first surgery approx 4 weeks after. I didn’t fit in any of the risk groups. After numerous TURBT’s and one dose of Mitomycin I was cancer free for around 6 months then it returned, after two more TURBT’s, I’m now starting my first BCG treatment on Friday. (more…)

Bladder Cancer Survivor

Early diagnosis can save your bladder!

From Tony: “Early diagnosis can save your bladder!”

Tell your story by posting here or on social media using the hashtag: #BladderCancerAwareness

We would really appreciate it if you followed us on Social Media to help spread the word about the importance of Bladder Cancer testing.

Our Twitter is here:

And our Facebook page is here:

My Husband’s Story

My husband was diagnosed with Bladder cancer in February 2017
after two operations to removed tumours and treatment with BCG he was clear.

In February 2019 my husband started feeling unwell and pain in the lower back and leg so doctor thought was sciatic nerve pain but the pain didn’t go away and he requested extra test.

After 4 Months of constant visits to doctors and scans he was diagnosed with bladder cancer again but this time was stage four he had a tumour in his left hip and the cancer had spread to his bones.

Doctors gave him only 9 -12 months without treatment.

He had Chemotherapy, Immunotherapy applied for couple of trials and he was unsuccessful to get them. He had also radiotherapy to the hip and his back but nothing works.

My Dearest husband died last week at the age of 54. Never smoke or drank and had a healthy life.

Cancer doesn’t discriminate.

By the way I sweat a lot …

2015 I went to my GP … hoping to scam some penicillin to clear up a chest cough.
As an after thought I told her that I have had random bouts of severe sweating episodes on and off for a few years – there appeared to be no pattern to it.
She said it could be a heart issue and began to send me off to a cardiologist.
Then she said would I mind doing a 24 Hour urine test just to eliminate something a bit weird. (more…)

My journey starts today

I had blood in my urine 3 months ago so went to emergency department of hospital. They did blood tests, found nothing, urine cleared up – they booked me in for cystoscopy in a months time. 3 weeks later more blood so went back to hospital – doctor told me was “probably bladder cancer” but it is typically “very slow growing so no harm in waiting a week to check” I had an MRI on that day – after waiting 8 hours, I was told no tumors detected and bleeding was enlarged prostate – I was relieved. A week later I went in for cystoscopy even though was convinced there was no need. As I watched the camera go in live on the screen I saw the smooth bladder wall and then strange branch like growths. The doctor says “That’s a tumour”. This happened about 5 hours ago so I am still processing things. Hopefully surgery will happen next week and I will take it from there. I am scared and not convinced that doctors know what they are doing.

Add Your Story