Dementia and Bladder Cancer

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.

RIP mum x
Maria Marinaccio

RC in October

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.

Lance Shakespeare

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

BCACF Newsletter – Spring 2020

THE SUPPORT ISSUE

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.

BRAVING CHEMO

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.

PATIENT GUIDEBOOKS

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.

UROLOGY NURSES

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.

ROYAL MELBOURNE HOSPITAL UPCOMING STUDY

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.

COVID IMPACT ON CHARITIES

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.

DONATIONS

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!

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Victorian Urological Nurses Society (VUNS) Bladder Cancer Group – An Overview

By Marc Diocera
Group Coordinator, VUNS Bladder Cancer Group
Genitourinary Nurse Consultant, Peter MacCallum Cancer Centre

The Victorian Urological Nurses Society (VUNS) Bladder Cancer Specialist Interest Group (SIG) is a sub-speciality group of advanced practice nurses caring for patients with bladder cancer.

The group was originally formed by Victorian urology nurses in 2013 to address the issues that nurses faced during the 2012 global BCG shortage.

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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.

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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

BCACF Newsletter – June 2020

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.

New Downloads

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:

Support us by liking our Facebook page

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
  • Campaigning For Cancer South Africa joins WBCPC
  • COVID Advocacy Exchange
  • EAU20 Virtual Congress & Theme Week
  • Bladder Cancer in the News
  • Important dates & events

Read the WBCPC May newsletter or learn more about the WBCPC at worldbladdercancer.org

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