A Journey With Bladder Cancer. Urothelial Cell Carcinoma-UCC

Did you know: we offer a 1 to 1 Bladder Buddy service?

We try to match you with a buddy on the basis of gender and diagnosis and, if possible, someone local to you.

Bladder Buddies are not just for patients! They are also for carers and anyone affected by a bladder cancer diagnosis.

If you think this would be helpful please head to our website and fill out a short form, and we'll put you in touch with our wonderful Bladder Buddy co-ordinator: https://fightbladdercancer.co.uk/get-help/getting-support

NCI researchers have developed a non-chemotherapy treatment regimen that is achieving full remissions for some people with aggressive B-cell lymphoma that has come back or is no longer responding to standard treatments. Learn more: https://go.nih.gov/IPEFaPY

When Tulane Cancer Center called me yesterday to see how I was doing, I curiously asked how long they would continue to call me. She informed me that the plan was 5 years after finishing the clinical trial. A year of taking that bag of fluid every two weeks, that gave me two minor medical issues I have now. Yes, it probably saved me from reoccurrence, but it doesn’t mean the remnants of its side effects hasn’t made my life completely wonderful. 
Any who, this is the last year I will get the calls. Since my scans aren’t scheduled until November, they may wait till then, although technically June would be five years. Anyways, that will break my bittersweet tie to New Orleans medical district.

Six years ago today, a 10-hour surgery took place. The day I went from incurable to no evidence of disease!

PET scan scheduled for November 15th..
The reason for this is because on my latest CT, the radiologist wasn’t able to determine if the pelvis nodes that are enlarged are reactive or not.
Must be sure. 🙏🏻

My latest scans showed some enlarged lymph nodes in my pelvis. Every scan they are either smaller or bigger, so I wasn’t too worried about that. However, because the radiologist commented that he wasn’t sure if they were reactive or not, my oncologist wants to rescan me in three months. 🙏🏻

6 years ago today, I was told by the Urologist that I had bladder cancer!
Later was told no cure, can treat to prolong life.
Scans are due this month! I’ve been no evidence of disease for 5 years and 5 months!

I know it’s been quite a while since I posted here…I apologize for that! I’ve been traveling and taking care of my grandchildren!
There isn’t much to report these days , especially since I only get scans once a year now and yesterday they removed my port! It was a big day with lots of feelings!
Please feel free to contact me for any questions or just to talk ! 🥰

3 month supplies!
My life!

My thoughts and prayers go out to Kirstie Alley’s friends and family.
🙏🏻💙

My oncologist asked me if I wanted my port removed and I told him that I’d like to wait until after the holidays. Sometime around January or February it will be scheduled to be removed!
February 8 will be five years no evidence of disease! I am truly blessed beyond measure!

No Evidence of disease!!! 
I can breathe again until the next time!

This is the clinical trial immunotherapy medicine I took for a year!

New immunotherapy is approved for some people after bladder cancer surgery on the NHS in England, Wales, and Northern Ireland | Fight Bladder Cancer The Department of Health and Social Care has published final draft guidance recommending nivolumab to be offered by the NHS for treating some people with bladder cancer at high risk of recurrence after their bladders are removed by surgery. Nivolumab (also known as Opdivo and made by Bristol Myers S...

Oncologist said if scans are good next month, we will discuss during my September visit about removing my chemo port! Wow. This is big! I’ve been no evidence of disease for only 4 years and 4 months!

https://youtu.be/edPW4be8TsE

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Love this!

Update:
I can not get my scans until July.
So I have Medicare through disability from having stage four bladder cancer. This year my plan went under the umbrella of a company called WellMed and and they use another company to determine whether scans and ultrasounds are going to be approved.  This company has decided that I can be scanned once a year now. I am disappointed, mad, and afraid. These people have no idea what they are doing to me because I already have anxiety that I developed during cancer. I just pray that I am still no evidence of disease. I have not been scanned since July 2021. 

It’s been 4 years since treatment and my Radical Cystectomy!These 3 amazing, young, and brilliant doctors are a large part of why I’m still here today, not to mention all the prayers from family and friends!
Dr. Jill Vincent: Radiation Oncology
Dr. Scott Hebert (middle) Oncology
Dr. Jonathan Silberstein (left) Urology/Surgeon

Happy New Year!
Just wanted to update…
Scans on the 21st! It’s been 6 months, so I’ve been nervous for months! It’s hard to go from getting scans every 3 months for 3 years to 6 months! I know it’s a good thing, but it doesn’t make the anxiety any better!

So very true!

Body Image After Reconstructive Surgery | BladderCancer.net Getting used to the "new normal."

As a blood recipient before I could start my journey of treatment, I encourage people to donate blood! It’s a much needed gift all the time!

Nearly 1.9 million new cancer cases are expected to be diagnosed in the U.S. in 2021. Donate blood and platelets to the American Red Cross to help provide blood products to cancer patients when they need it.

Very cool!

Tulane Urology -- which utilizes robotic surgery to treat prostate and kidney cancer among other urologic conditions -- recently acquired the first single-port Da Vinci surgical robot in the Gulf South. It's less invasive, less painful, and it allows for a quicker recovery and return to normal activity for patients. Learn more: https://conta.cc/3Aq36CC
(Photo © 2021 Intuitive Surgical, Inc.)

I saw the Oncologist today with labs and port flush too…
He said he would see me in 3 months. I asked about scans and he told me we will discuss those in 3 months when I see him again!
I was surprised. He said your scans have been good, your labs are good…
This is big!! I’ve been scanned every three months for years..
And when I read my labs….
My GFR has gone from 36 to 46 since December! That’s still in the moderate failure range but it has improved!

My venous ulcer is almost completely healed, and no more picc line!

https://bladdercancer.net/living/active-ostomate-necessities?utm_source=weekly&utm_medium=email&utm_campaign=19a86c9b-cd55-4aa1-8bf9-badd4391f303&utm_confid=sovkouv7h&aGVhbHRoIHVuaW9uIGJsYWg=2a9e9e17e0da7b07260de2bfd13b2dcc278a331092136c8e3839cce04c5cfa88

Ostomate on the Go Necessities How to go about your day with the essentials for your ostomy.