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!

Wombat

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.

(more…)

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?

Shellatyoe

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

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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.

Frankie – Bladder Cancer Survivor

On March 8, I celebrate my 60th birthday. 2019 is doubly significant as I also celebrate 30 years as a bladder cancer survivor. I am incredibly grateful and consider myself fortunate.

But on reflection I remember it being a surreal time with overwhelming feelings of disbelief. Mostly I recall the oddity of being diagnosed with a medical condition I had never known about or understood. Bladder cancer – the doctors were kidding me, right? I am a woman, and at the time of diagnosis I was 30 years old. Research informed me that bladder cancer was 50% less likely to occur in women and 50 years the average age.

In 1989 at age 30, I had a blessed life with a career in check and a happy family – running around after two small children. But I felt tired, was overweight and had a recurring UTI (urinary tract infection). When blood was evident in my urine, my GP ordered further tests. I was shocked when a tumour occupying 90% of my bladder was detected.

Immediately I was paired with a prominent Urologist and soon I became known as that young girl in Ward 3 South at Cabrini Malvern. Life as I knew it changed for ever and my case was shared widely in medical journals.

Surgeries and several treatments of BCG ensued, instilled in a catheter and lying on a gurney I rotated 90 degrees every 15 minutes. The tumour was successfully removed and my bladder responded well to treatment. On the physical side, all boxes ticked.

Emotionally though, I was challenged and confused. This was the 1980’s, the big ‘C’ was still under a cloud and young people don’t get this disease anyway. Ironically, I became aligned with my father and father-in-law. Aged in their 50’s and 60’s they too were visiting respective Urologists’ and each was in early stages of prostate cancer.

Entrusting the medical fraternity with managing my physical issues, I began a gentle regime changing my approach to mind, body and soul. I shifted my focus to improving everything I could control as a mother, wife and human. I shed kilos, exercised, stopped smoking and gave up the carnivore life.

Cystoscopies became part of my routine and I often walked to hospital from home. When I changed into theatre garb, the walk continued all the way into theatre, no trolley for me thank you. I made my instructions clear – strictly local anaesthetic. Remaining alert I chatted through procedures with theatre doctors and staff. I believed this would ensure I had the mental apparatus to live the experience and will myself to health.

It’s been an epic 30 years and in a recent post-cystoscopy chat with my Urologist we have agreed that I am clear of any nasties for now and I can ease up on the checks going forward.

My team of vigilant doctors have been a blessing and no less are my amazing supportive family. I am indebted to them all. To Drs. David Bosher (GP), Gabi Reisner (former Urologist) and Daniel Moon (current Urologist), thank you, thank you thank you…..30 years surviving has been largely due to you.

I urge everyone to be vigilant. Listen to your body, read the signs and act!

Frankie

Good Recovery

My husband has been diagnosed with bladder cancer and will be operated on in three weeks time. However, a close friend was diagnosed with a more advanced form 5 years ago, and after surgery and her bcg treatment it came back a year later. So she has had to have BCG treatment for three years in total, and now is on a yearly cystoscopy check up with no signs for the past year or two of anything. So we can say she is in remission. This treatment is very good.

Mike

I too was diagnosed in July 2018 with a high grade but non-invasive bladder cancer. Since then I had 6 weeks of BCG treatment followed by a further cystoscopy in which biopsies were taken. I’m glad to say that these revealed no cancer cells. I’m to have further cystoscopies every 3 months in 2019 with 3 weeks of BCG after the first one. I’m not sure if there’ll be BCG after the subsequent cystoscopies. All being well I’ll progress to 6 monthly checks in 2020.
The BCG treatment was something I didn’t find easy although the nurses were really good, being friendly but professional. I’ll never find catheterisation easy. It’s always been one of my great fears! I was fortunate with the BCG side effects. I know it can be quite unpleasant, but I got off pretty lightly with only feelings of great exhaustion.

First 6 weeks of BCG

I was diagnosed with both non invasive and invasive July 2018 and have now completed my first 6 weeks of BCG. The roller coaster ride, the journey, has certainly be interesting.

I am now waiting for my next Cystoscopy in a few weeks.

I am looking for anybody that has been through similar treatment and what their outcome has been, short and long term.

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