Hi – reading the forums – seems that in the US a lot of people have success with Uribel relieving post BCG discomfort. Seems it is not available in Australia – does anyone know if there is an equivalent available here?
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.
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.
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!
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 email@example.com
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!
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?