Bladder Cancer T1G3. (TURBT+Chemo) or (Cystectomy)?

chanmak44

I am 51 year old male and was recently diagnosed with Bladder Cancer. After TURBT, pathologyindicates

Superficially invasive urothelial carcinoma with extensive background high-grade papillaryurothelial carcinoma.

Tumor superficially invades lamina propria.

Muscularis propria is present without tumor involvement in sampled tissue.

Dr gave two options. 1) 2nd TURBT, Chemo and Cystoscopy every 3 month with 33 % chance of aggressive reoccurrence. 2) Cystectomy.

I am seeking 2nd and 3rd opinion from MSKCC and MOFITT.

I am wondering if there is anyone who was in same boat as me and what decision they made and why. Thank you in positive anticipation!!

barehead

Sorry you are having to deal with this. If you have not done so already, go to bcan.org for curated medical information on about any topic regarding bladder cancer. You can also visit ncnn.org for the typical treatment protocols for each stage. Sounds like Stage 1/high grade diagnosis. A second opinion is a good thing, and I received excellent care at Moffitt where I got my second opinion. My situation was a bit more aggressive than yours. Since this is a profoundly personal decision, I suggest that you continue your homework (as you are doing) and perhaps reach out to the BCAN survivor-to-survivor program where you can be put in contact with folks whom have had a similar diagnosis to find out what their decisions were.

chanmak44

https://csn.cancer.org/discussion/comment/1713381#Comment_1713381

Thanks,barehead. I am glad to hear that you got excellent care at Moffitt. Logistically, it would be a preferred place to complete my subsequent treatments. Also, thank you for recommending ncnn.org. The guidelines were very helpful. I signed up for BCAN and was connected with another survivor. BCAN's Inspire network is very helpful, too.

lawyerguy

I had exactly same initial diagnosis, given same options…

the decisive fact it HAD NOT invaded the muscle. I got the TURBT and then BCG treatment and it stayed away awhile

It came back, had another TURBT, and then got chemo because the BCG wasn't working. Over 4 years, still getting monthly infusions, but clear, knock on wood.

Also new drugs coming out. IBRX has adjuvant that has shown efficacy with BCG for people like me who previously failed BCG!,, I also drink EGCG green tea, hibiscus tea, take curcumin daily. Eat garlic and grapeseed extract.

chanmak44

https://csn.cancer.org/discussion/comment/1720393#Comment_1720393

It’s been a year and I had a journey of quite a few challenges. I chose MSKCC for 2nd TURBT. Tumor was removed but it turned out to be small cell cancer (which is rare and aggressive) which also spread in my liver. I went through 6 rounds of Chemo (Etop+Cis) and 2 years of Immunotherapy (Atizo) which is still continuing. Chemo & I/O removed all tumors but Liver tumor came back in November. Drs removed it using Ablation. At the moment I am in remission but living scan to scan. I hope your tumor is typical Urothelial so your treatment could be different.

steveski

I’m sorry to hear about your diagnosis. I can definitely relate.

I am also a 51 year old male (almost 52) and I was diagnosed in September 2024 with muscle invasive bladder cancer T2.

The first opinion I was offered for treatment was chemotherapy and radical cystectomy. I established a team of doctors at Northwestern medical in Chicago and they conducted a second TURBT and determined that I would be a good candidate for bladder preservation if I wanted to go that route. So I chose trimodal bladder preservation.

I just finished six rounds of chemotherapy and 36 radiation sessions. I’m feeling a little better now, but I have a lot of “ scopes and scans” in the coming months/years. Fingers crossed..

You may have already made your choice for treatment and whatever you chose I wish you the very best. It seems that all of our treatment options have their pros and their cons. And it is a little scary how subjective the final decision really is. Good luck, my friend!

chanmak44

Steveski,

I found out that I have a very rare and aggressive type of cancer: small/large cell urothelial carcinoma with neuroendocrine features. This type occurs in only 0.01% of bladder cancer patients. Three weeks ago, I had a brain hemorrhage caused by a blood vessel bursting in a new metastatic brain tumor. Although I received a clean scan in December, they did not scan my brain at that time. The neuroendocrine components managed to reach my brain, but immunotherapy cannot cross the blood-brain barrier. I underwent brain radiation last week, and now it’s a waiting game to see if it worked.

The most disappointing thing is that my oncologist told me that immunotherapy (Tecentriq) sometimes cannot reach organs like the liver or brain (after the mets). If he knew that, I don’t understand why regular brain scans were not conducted. For now, I'm just going to see if the radiation treatment was effective. In summary, please do your own research on the molecular pathology of my tumor and its treatment. I've found ChatGPT to be much more helpful in the last two weeks than my doctors.

Take care.

steveski

https://csn.cancer.org/discussion/comment/1721645#Comment_1721645

chanmak44,

I am so sorry you have had to deal with all of this. I can imagine how disappointing that is. I really appreciate your advice about doing some research on this type of cancer. That is also a good reminder about being our our health advocate, although I feel like I need a medical degree to understand my own disease. Good luck with your radiation results and with the "waiting game" that is always a mental challenge.

Steve