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.
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.
All of the major milestones in controlling cancer worldwide have come through clinical trials. ANZUP is committed to increasing engagement with consumers, carers and the broader community to promote the importance of clinical trial research.
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 ~
- The microbiome and its contribution to cancer and bladder disease.
- Solving the clinical trials conundrum.
- 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!
Last 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.
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
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!
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.