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.

Think Tank attendees 2018

Think Tank 2018: Bigger and Better than ever!

Earlier this month, our board member Dr Stephanie Demkiw was fortunate enough to attend the BCAN Think Tank in Denver, Colorado – a meeting that brings together 250 of the top medical and scientific minds in bladder cancer.

The meeting opened with a session for patient advocates. This included approximately 30 patients, many of which have undergone neobladder or ileal-conduit surgery and whose stories and experience are vital to drive the yearly Think Tank.

The following two days focused on research and medical advances in potential treatments for bladder cancer. The main focus of these sessions was ~

  1.  The microbiome and its contribution to cancer and bladder disease.
  2. Solving the clinical trials conundrum.
  3. Upper Tract Urothelial Carcinoma (UTUC): From improvisation to research-driven care.

Stephanie was also an active participant in the Survivorship Working Group, where bladder cancer survivors and patient advocates actively brainstormed toward improved (and importantly, practical) resources for patients and their families.

The meeting was a huge success and we cannot wait to share more in coming weeks!

(L-R ) International patient advocates Elin, Stephanie, Ferg and Ranveig from Norway, Australia, Canada and Norway respectively.
(L-R ) International patient advocates Elin, Stephanie, Ferg and Ranveig from Norway, Australia, Canada and Norway respectively.


UroGP conference 2018

UroGP LogoLast weekend the BladderCancer.org.au team were at the UroGP conference at Melbourne Convention Centre.  As usual our publications were very popular and we are almost sold out of both of our booklets now.

That is now 4,000 booklets in doctor’s, patient’s and nurse’s hands and another 1,000 are now in production.  Our “Bloody Piss” posters were also very popular.  You can download all these publications on our website or email us for more copies.  Our new BC Patient Care Plan was extremely popular.

Both our founders spoke to delegates.  A/Prof Nathan Lawrentschuk was in several sessions and Tony Moore spoke to over 150 nurses about his NeoBladder and our charity.

For everyone who was there, we look forward to seeing you next year and giving you another chance to win a nice guitar!
Tony Moore at UroGP 2018
Tony Moore at UroGP 2018

Environmental and Occupational Risk Factors for Bladder Cancer – A BCAN Patient Insight Webinar

Smoking tobacco is a well-established risk factor for bladder cancer. Yet so many BCAN patients have never smoked. What are the other factors that influence risk of this disease? And, can any of them be avoided?

In this webinar, Dr. Debra Silverman, Chief of the Occupational and Environmental Epidemiology Branch within the Division of Cancer Epidemiology and Genetics at the National Cancer Institute, will share the latest science linking bladder cancer with exposure to a range of occupational and environmental carcinogens. Dr. Silverman will concentrate much of her talk on exposure to water pollutants and bladder cancer – a focus of her recent research.

Brief reflections and remarks regarding what this evidence means for advancing bladder cancer prevention efforts will be offered by Lynn Thorp, National Campaign Director at Clean Water Action and Dr. Polly Hoppin, Research Professor at the University of Massachusetts Lowell’s Department of Public Health and on the Leadership Council of the Cancer Free Economy Network

Register for the free webinar.

A link to view the recorded program will be sent to all who are registered for the program after the program concludes.

Tue, Jul 24th from 6:00 PM – 7:00 PM EDT

This is the registration link. Please feel free to share!

Wee Tests!

This company is offering home urine tests: www.wetestonline.com

It’s cheaper than a doctor’s visit. Useful if you have some concerns about your wee and it’s difficult for you to get to doctor.

However we must stress, if you notice a change in your urine, especially pink or red urine ….. GET TO A DOCTOR.

Flying our Aussie Flag at BCAN’s 2018 Think Tank in Denver, Colorado

Only a few weeks to go until our ever-passionate board member and patient advocate, Dr Stephanie Demkiw, heads to Colorado to collaborate with BCAN in their annual ‘Think Tank’. This scientific assembly is the premier bladder cancer-specific medical meeting in North America and brings together some of the top medical and scientific minds in bladder cancer.

Since its inception in 2006, the Think Tank meeting has focused on identifying obstacles and creating solutions in bladder cancer research, and has fostered discussions to help define priorities for advancing such research, across the bladder cancer spectrum.

Invited participants include urologists, oncologists, researchers, pathologists, social scientists and patient advocates, all with a shared focus – dedicated to improving the diagnosis and treatment of bladder cancer.

BladderCancer.org.au would like to take the opportunity to thank everyone who made such generous donations in order to get our Australian voice on the international map!