Any other females here with bladder cancer in their 50s?

Hi Jo. Thank you so much for your response and sharing your experience . I have seen many consultants and many have recommended to have chemo (cisplatin and gemcitabine) before surgery. The cancer was found on September 2024. I have decided to to go ahead with the RC wile I’m feeling strong and after the pathology report I may consider the adjuvant chemotherapy.

I can only hope I am making the right choice . Surgery will be 21st of May .

Best ,

Lesley

I was 51 when diagnosed with bladder cancer last November. I had 4 tumors where 3 were removed on December 20th during TURBT surgery but I still had one that had already grown into my bladder wall, which eventually ended growing outside my bladder wall. Anyways, I did not have any chemo or radiation prior to the RC because the type of bladder cancer I had didn't respond to either of those. So February 19th I had surgery and now have a neobladder. Luckily I didn't have to wait any longer as the tumor was growing very fast and ended up being 12cm. They also removed my uterus and 24 lymph nodes which only 1 was positive. I had a catheter in for 4 weeks, it was removed on March 20th. You have a voiding schedule to keep up with afterwards as you have to train your new bladder and alot of work to tighten your pelvic floor muscles, but in the end I am glad I went this route rather than with a Stoma. I started immunotherapy on April 3rd for 1 year as the cancer was high-grade/ aggressive, so hopefully no new cancer cells decide to form.

We both started nivolumab on the same day and have identical pathology (PT3AN1M0). Some differences: my PT3A tumor was 5mm but I had three deposits in my node with the largest being 2.7mm. Plus I have/had regular carcinoma (papillary & CIS). And I had adjuvant DDMVAC (4X).

Are you doing ctdna testing (signatera, northstar response)? And genomic profiling with natera altera or northstar select?

You can also boost nivolumab with:
- CBM588 bacteria: https://www.cityofhope.org/news/microbiome-and-kidney-cancer
- Akkermansia bacteria: https://pmc.ncbi.nlm.nih.gov/articles/PMC9330544
- Camu camu supplements: https://ascopubs.org/doi/10.1200/JCO.2024.42.4_suppl.TPS491
- H1 antihistamines (Zyrtec/Claritin): https://www.mdanderson.org/newsroom/antihistamines-may-improve-immunotherapy-responses-study-finds.h00-159465579.html
- Melatonin: https://immunocine.com/the-integration-of-melatonin-in-cancer-immunotherapy-advancing-cancer-treatment-strategies/#:~:text=Beyond%20its%20direct%20anti%2Dcancer,immunity%20%5B16%2C%2017%5D.

Worthy of consideration:
- Intermittent fasting: https://www.jci.org/articles/view/161483#:~:text=The%20mechanisms%20underlying%20the%20beneficial,of%20IGF1%20reduction%20(5).
- Losartan: https://www.uchealth.org/today/blood-pressure-drug-to-fight-pancreatic-cancer-trial-underway/#:~:text=Losartan%2520as%2520a%2520multipronged%2520attack&text=All%2520patients%2520receive%2520a%2520four,It's%2520the%2520spread%2520of%2520it.%E2%80%9D

I fast daily from 6PM to 11AM.

Interesting: eosinophils can indicate response to immunotherapy:
- https://www.sciencedirect.com/science/article/pii/S1558767324000703
- https://www.tandfonline.com/doi/pdf/10.2147/CMAR.S333823
- https://pubmed.ncbi.nlm.nih.gov/33312694/

DDMVAC and months of antibiotics wrecked my intestinal health most likely. Hence an effort to recover it ASAP. I added Physician’s Choice as another supplement and I am trying to eat healthier.

Hi Tanya.

That's very helpful information. I too will also have my uterus removed along with some other organs. I don't have the option for a Neo bladder (something about colitis in my colon) and the aggressive type of bladder cancer I have.

Can I ask how long was your stay in hospital and did you have good pain meds?

You sound like you are doing very well in your recovery.
Best,

Lesley

I was in the hospital for 5 days after the surgery, so 6 days in all. They were great helping with any pain I had.

I hope everything goes well for you. Please let me know how you do! I'll keep you in my prayers for the 21st!!

Thanks Jo and I will let you know.

I’m wondering what I should pack for the hospital stay . Nightdresses or pajamas , underwear etc …
Also how long before one is up and moving , brushing teeth for example and showering etc ?
As always any advice is much appreciated .

Lesley

I also have a neobladder. I had the RC surgery on February 19th. How are you doing as far as incontinence? It has only been 2.5 months for me.

Today marks 6 months exactly since my surgery. I'm doing much better. I always wear a pad when I go out but that's just because I'm a little nervous without it. At times I'll have just a little leakage still but I can sneeze and cough without a problem now. Yay!!! I feel very fortunate for this new bladder. I've had no problems at all outside of the initial incontinence. How are things going for you?