All over the world, during May, charities will be working to promote awareness of Bladder Cancer.
While we will have some programs for the entire month, we are focusing heavily on the first week, and we are asking you to help us by pushing out our two new Bladder Cancer awareness videos on your social media!
We have also taken 5,000 spots on freeway advertisement screens in Melbourne. Look out for our ads (don’t crash!) on Punt Rd, Mulgrave Freeway and the West Gate Freeway during the first week of May.
We are a little early with our Autumn News so that we can remind you about the upcoming USANZ Convention in Melbourne (25 – 28 Feb).
Our charity, Australia’s leading charity for bladder cancer patients, is staffed by volunteers. Our team comprises patients, urologists and urology nurses. Our goal is to give all bladder cancer patients the best chance to learn about their disease and make better choices to survive.
USANZ & ANZUNS is at the Melbourne Convention and Exhibition Centre from this Saturday February 25th – 28th. As usual we will have a stall loaded with Patient Guidebooks and Procedure Guides on hand for you to stock up. These are ideal for medical clinics and other health awareness purposes and will save lives. We will be giving away a guitar once again to a lucky attendee.
Last year I met with other bladder cancer charities from around the world in Paris. There was discussion around the idea that a small amount of blood in urine (Haematuria) need not be investigated further and that only gross haematuria needs further investigation.
My view, as a patient who has lost their bladder, is that ALL haematuria needs investigation. If I had known the signs earlier (light pinkish pee) I would have acted sooner.
I know all medical people around the world are under pressure, but I urge everyone who has a concern about their urine colour to ask your GP for a simple dip stick urine test.
If blood is present – ask for a referral to a UROLOGIST!
All medical people are busy. You must drive your own health care.
If you are worried about anything, don’t delay, go see your doctor.
After a very successful USANZ Exhibit on the Gold Coast in July, and a new financial year ahead of us, our charity grows ever stronger, supporting patients and medical professionals involved in bladder cancer.
Our updated free Procedure Guides were a big hit at USANZ. You can download these for free. We also have new stock of patient Guidebooks, Urinary Diversions books and Bladder cancer Care Plan sheets.
Please, we get no Government funding and we have big projects that need support. Please consider a small (or large!) donation: www.bladdercancer.org.au/donations
Urology Week
26-30 September is Urology Week supported Internationally through the European Association of Urology (EAU). In 2022 their focus is Bladder Cancer and the strong blood in urine message. There are three fantastic posters here you can download for free from our web site.
New Board Member
Dr Sachin Perera is one of the newest members to join the bladdercancer.org.au board in 2022. As an aspirational Urologist Sachin works closely with leaders in the field to deliver research and clinical services in one of the world’s preeminent centres for excellence in Urology. Read more…
WBCPC Forum
On the 8th September the much anticipated World Bladder Patient Forum is being held in Paris. You can attend on-line or in person. Take two hours out of your schedule to log in. Register Here
UAA 2022
The Urological Association of Asia Congress is to be held October 5-8 in Sydney at the Convention Centre. BladderCancer.org.au will be there and we are giving away a great Aussie Flag Electric Acoustic Guitar in a case. Valued at $599.00 drop by to our booth for a chance to win!
MAY IS INTERNATIONAL BLADDER CANCER AWARENESS MONTH
NOW is the time to create an awareness promotion in your hospital, surgery or neighbourhood that you can launch on Monday next week. Bladder Cancer Awareness month can be a great topic for weekly team meetings.
Do a fund raiser in your neighbourhood. Put posters in urinals and on the back of toilet doors. Get a message on lift video screen in your office.
We can design things to suit you and you can download lots of stuff from our web site for FREE to promote our awareness month.
Stay tuned to our Facebook, Twitter and TikTok pages to see more Bladder Cancer Awareness materials you can share during the month including new videos and awareness tools from our partners at the World Bladder Cancer Patient Coalition.
MCG Lunch
Our annual fund raising lunch at the Melbourne Cricket Ground (MCG) has been a highlight of Bladder Cancer Awareness month. Those who have attended in the past know it’s a great lunch in a spectacular dining room. But this year we were unable to get the room. A handful of us are going for lunch at the MCC on Wed 25th May to maintain the tradition! If you’re interested we might find a space, but it is very limited seating. contact@bladdercancer.org.au
USANZ on the Gold Coast
USANZ on the Gold Coast starts on June 25th and one lucky delegate will win this guitar. Drop by the BladderCancer.org.au table to enter the draw!
The EKO EVO III D EQ guitar features a classic Dreadnought cutaway body shape and a solid cedar top, mahogany back and sides, South American roupana fingerboard and bridge. The guitar is equipped with the Fishman Presys Blend preamp and internal condenser microphone that makes this instrument well suited both on stage and in studio. Case included. Valued at $899.00
Another season arrives with hope that we can resume normal lives with COVID. It’s been a trying time for everyone, but especially for the medical fraternity, and patients waiting for pain relief through surgery. Let’s hope that another COVID variant and subsequent wave doesn’t interrupt our recovery. We are flying the Ukranian flag this edition in support of those brave people.
CONVENTION UPDATES
Good news that events appear to be going ahead in this COVID safer world.
UROGP, the annual symposium bringing doctors and nurses up to date with all the latest in the world of Urology, goes ahead on Saturday March 25th. You can register here: urogp.com.au
There are 2 opportunities this month for bladder cancer patients and survivors to earn some money or vouchers by participating in surveys. One is for METIS Healthcare Research and the other is a Monash University study.
NEW BLADDER CANCER THERAPY
Dickon Hayne, Professor of Urology at the University of Western Australia, has been conducting trials on a new drug that is injected into the bladder. Read more
BLADDER CANCER & SMOKING STUDY
A recent study gives more weight to smoking being a major factor in bladder cancer illness with 44 percent of future bladder cancers attributable to smoking. Read more
As we head into the festive season in our COVID normal world, we wish everyone the best for a safe period ahead and happy times with friends and loved ones.
World Bladder Cancer Patient Coalition International Patient Survey
The world body for bladder cancer patients has launched a new survey for those who have been affected by the disease. This is a really important tool for helping us to understand bladder cancer.
A call out to all patients and medicos: Please promote this survey to as many bladder cancer patients as possible, past & present.
As it becomes possible to meet in groups again, both of these major urology events in Australia have been scheduled for 2022. UroGP is on Saturday 26th Feb at the Melbourne Exhibition Centre and USANZ/ANZUNS is on the fabulous Gold Coast 25-28 June 2022. In Amsterdam EAU22 will be held from March 18-21.
Covid & Bladder Cancer Current Research
Trends in Endoscopic Management of Bladder Tumours post lockdown in Australia. Have we caught up?
On October 22nd at the USANZ (Urology Society of Australia and New Zealand) Victorian state meeting, research papers were presented on the trends of bladder cancer management in pre and post Covid-19 lockdown healthcare systems in Victoria & Australia.
Please check out new chat function we are trialling. It is a work in progress. Before long we will have a host of AI answers on many common bladder cancer questions. Drop in and say hi Mon-Fri
Literature
If you require copies of our Bladder Cancer Patient Guidebooks please email us at contact@bladdercancer.org.au and we will send you a literature pack.
Post Your Stoma
Patients facing cystectomy really appreciate seeing how a stoma and bag work.
With so many Australians still in lockdown due to the pandemic, caring for each other is so important. Think about someone who might be of concern to you, and phone them, shoot them an email or send them a text.
In this issue, we want to highlight a few tools to help bladder cancer patients, their loved ones and medical professionals.
NEO BLADDER VS ILEAL CONDUIT SURVEYS
We have 5 years of data from over 300 surviving bladder cancer patients who have been through radical cystectomy. Data updated this week. This has been a great help to many people facing this decision.
This new book by Beverly A Zavaleta MD, is getting the thumbs up on many social media pages. Beverly is a doctor who became a cancer patient. It’s a book about how to care for yourself in order to feel better when undergoing chemotherapy. You can get a free preview on Google Books.
TIPS FOR CAREGIVERS
The big US Bladder Cancer Group – Bladder Cancer Advocacy Network (BCAN) – has released a great new booklet for care givers.
If you or your practice need more Bladder Cancer Patient Guidebooks, Urinary Diversion booklets, Patient Care Plans, “Blood in Pee” posters, just drop us a line at contact@bladdercancer.org.au
FACEBOOK GROUPS
If you are into Social Media there are two very good patient support groups for Bladder Cancer. Look for Bladder Cancer Support – Australia / New Zealand and for men only search: Mens Bladder Cancer and Prostate Support Group.
WE ALL COPE IN DIFFERENT WAYS
Covid is a bust. I heard this song on ABC National Radio. A real Aussie song, simple, heartfelt and touching. It’s a really good tune, to bring a little bit of light into a dark room.
AUSTRALIAN DIRECTORY OF BLADDER CANCER EXPERTS
If you are often working with Bladder Cancer patients, you should register on our directory. It’s free of charge. Our web site gets thousands and thousands of visitors so its a great way for patients to find professionals in their area.
Anyone involved with Bladder Cancer knows how important Urology Nurses are. The Victorian Urology Nurses Society is very active and in the following link you can read about their bladder cancer speciality group and view a summary of their recent survey.
The Royal Melbourne Hospital upcoming study on CG Oncology NMIBC oncolytic adenovirus (CG-0070) will take place in 2020/21. This intravesical treatment is being studied as a possible adjunct to bladder cancer treatments along side BCG or as a seperate treatment for BCG-unresponsive patients.
On an International level, the World Bladder Cancer Patient Coalition, together with other Global Cancer Patient Organisations, have published an extensive document on how COVID has impacted charities.
We get no Government funding. We rely on your donations to allow us to keep sending out booklets to patients and doctors; to allow us to keep pushing for greater awareness of Bladder Cancer; to allow us to keep helping thousands of people every month. Please send us a little donation. Do it now!
Thank you to everyone who supported Bladder Cancer Awareness Month in May. We pushed hard on Twitter and Facebook during the month which led to record traffic on all platforms and record booklet downloads. We also received some nice donations in May. Thank you. We get no government funding so any help is appreciated. You can donate here.
Start-up Guide for bladder cancer patient groups
The World Bladder Cancer Patient Coalition has launched its Start-up Guide for bladder cancer patient groups. Its an awesome document. If you want to get involved and start up a patient support group on Instagram, Facebook or other social media, or to start up a charity, this guide is a great place to begin your plan.
We posted lots of information and graphics during May, to highlight Bladder Cancer. We have had loads of requests for all of that info which is on our website for free download:
Our facebook page is where we get a lot of support. Please have a look, and friend us or like us!
WBCPC May News
The May 2020 edition of the World Bladder Cancer Patient Coalition newsletter is out now. If you are not on the WBCPC newsletter mailing list you can view the current newsletter on-line. This instalment includes:
Thank you for helping us make the world more #BladderCancerAware
Hi everyone and welcome to our April 2020 newsletter.
These Covid-19 times present a range of new problems. What were day-to-day things last month, like going shopping, now present new difficulties for many. It can be scary just going to the supermarket. Social distancing means that there is now less eye contact as you walk down the street. Anxiety levels can increase for people. We can be scared of getting near others or touching anything. And trying to be kind and think of other people first, instead of oneself, can be difficult in our own little “safety bubbles”.
So I have made a decision to give a BIG SMILE or a friendly wave to everyone that I walk past whenever I do my exercise or my dash down to Woolies.
It’s simple. And feels good for two. Try it!
Tony.
New Patient Cards
We have thousands of these cards which medicos can hand out to patients. It’s an easy way to lead patients to our free bladder cancer patient guidebooks.
If you want some cards for your clinic drop us a line and we will put some in the mail. E-mail: contact@bladdercancer.org.au
Post Your Stoma
We have started a “Post Your Stoma” campaign along the following lines:
The Post Your Stoma page allows other
people to see your stoma, with and without clothing. As you know,
making a decision to remove your bladder includes many questions. One
is… how will I cope with a stoma?
Letting other people see how your stoma
and bag are situated will help them to be more prepared and to make a
good decision. With clothes. Without. Close ups. In costume. Be bold! Be
Creative! Post Your Stoma!
These guides have been developed by doctors and patients to give
those going in for surgery or investigation a clear picture of the
entire procedure including preparation and recovery.
The March 2020 edition of the World Bladder Cancer Patient Coalition newsletter is out now. If you are not on the WBCPC newsletter mailing list you can view the current newsletter on-line. This installment includes:
Bladder Cancer & Covid-19
WBCPC General Assembly Meeting
Video: The Landscape of Advanced Bladder Cancer
EFPIA Blog – Industry – let’s step up
Bladder Cancer Awareness Mont
Free Weekly online support group – Healing and Cancer
The WBCPC newsletter is out now. If you are not on the WBCPC newsletter mailing list you can take view the current newsletter on-line. This installment includes:
Hi everyone and welcome to our final newsletter for the year. This issue has a bit of a focus on male issues.
Over the last few months we have attended UROGP, prepared yet another print run of Bladder Cancer Patient Guidebooks,
been active on Facebook helping people where we can, and continued to
be the number one source of information for Bladder Cancer patients in
Australia with over 9,000 unique visitors to our site and over 400
booklet downloads and mailings to patients and medicos.
We get no government funding, so how about giving us a leg up and making a Christmas donation?
World Bladder Cancer Patient Coalition Newsletter just released. The coalition is progressing strongly with the appointment of a CEO. This October newsletter has a lot of great information for patients and doctors. Well worth a read.
The Mens Bladder Cancer & Prostate Support Group is a new private facebook group for MEN ONLY that has sprung up and it
is absolutely fantastic. We know that men out number women as bladder
cancer patients, and the delicate subject of sexuality is not easy to
discuss for many. In a male only group there are lots of good
discussions going on.
We
are not recommending this clamp or recommending clamps in general. That
is a discussion for you to have with your doctors. But if you are using
a clamp to help with incontinence, which is an issue for many neo
bladder patients, some men report this new one is REALLY COMFORTABLE,
works well and has 4 size settings.
This
sheet has been so popular with urologists, oncologist, stomal
therapists, urology nurses and bladder cancer patients. But people were
complaining it was too colourful to print out so we have created a new
lighter colour, EZ print version.
Our friends at BCAN in the USA have been really busy. A new patient survey for bladder
cancer patients and carers, plus they are working on a US$10 million
grant for bladder cancer research from the US Government.
The
results of the survey will be shared anonymously and will be used to
create decision-making tools and patient education materials that could
help newly diagnosed bladder cancer patients and caregivers better
understand the impact of bladder cancer and its treatment.
BCAN in line for $10 million grant.
The
U.S. House Appropriations Committee released its report for funding in
fiscal year 2020 for the Defense Appropriations Act. The report
recommends $100 million in funding to conduct peer-reviewed research
into a number of cancers and bladder cancer is listed first for up to
$10 million. BCAN has been at the forefront of advocating for increased
funding for research into this sixth-most diagnosed cancer in the United
States. The funding request is just that for now – a request – and the
bill needs to be approved by both the House and Senate and signed by the
President to become law.
BCAN Mailing List
It’s so important we all work together to solve the bladder cancer puzzle. Join the USA BCAN mailing list. Bubbles for Bladder Cancer
May
19th was #BubblesForBladderCancer day! A day in which we blow bubbles
with our friends and families to remember those we have lost to bladder
cancer. Our patient advocacy group BCA Australia organised a national bubblethon to mark this special day!
