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

Subscribe to this newsletter

WBCPC 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.

Download the digital version (7.3mb PDF)

Download the Hi-Res printable version (23.4mb PDF)

2018 Bladder Cancer Diagnosis

I was diagnosed on the 22nd May 2018, I was 50 years of age. First and only symptom was haematuria. I went to my GP the day after this symptom, had a ultra sound 5 days after and I was diagnosed with high grade non muscle invasive cancer. My first surgery approx 4 weeks after. I didn’t fit in any of the risk groups. After numerous TURBT’s and one dose of Mitomycin I was cancer free for around 6 months then it returned, after two more TURBT’s, I’m now starting my first BCG treatment on Friday. (more…)

Download the 2020 #BladderCancerAwarenessMonth toolkit

Want to do more to make the world #BladderCancerAware?

Download the 2020 #BladderCancerAwarenessMonth toolkit created by the World Bladder Cancer Patient Coalition

Download the English version of the tookit.

The World Bladder Cancer Patient Coalition developed the campaign toolkit as a guide to help our member patient organisations, partners, and interested parties from all corners of the world to participate in the World Bladder Cancer Awareness Month campaign supporting and sharing our messages.

Read more about the toolkit and the World Bladder Cancer Patient Coalition

Bladder Cancer Survivor

Early diagnosis can save your bladder!

From Tony: “Early diagnosis can save your bladder!”

Tell your story by posting here or on social media using the hashtag: #BladderCancerAwareness

We would really appreciate it if you followed us on Social Media to help spread the word about the importance of Bladder Cancer testing.

Our Twitter is here:
https://twitter.com/bladderau

And our Facebook page is here:
https://www.facebook.com/Bladder-Cancer-Australia-Charity-Foundation-109407047166000/

BCACF Newsletter – April 2020

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!

Post Your Stoma

New Bladder Cancer Patient Procedure Guides

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.

Each guide can be downloaded for free and include:

  • TURBT
  • CYSTOSCOPY
  • BCG
  • INTRAVESICAL CHEMOTHERAPY
  • CYSTECTOMY
  • ILEAL CONDUIT
  • NEOBLADDER
  • KIDNEY & URETER REMOVAL

WBCPC March News

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
  • Food and Nutrition tips during self-quarantine
  • Podcast: Cancer Care during Covid-19 in Italy
  • Bladder Cancer in the News

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

Subscribe to this newsletter