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

chanmak44
chanmak44 Member Posts: 3 Member
edited February 2024 in Bladder Cancer #1

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!!

Comments

  • barehead
    barehead Member Posts: 43 Member
    #2

    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
    chanmak44 Member Posts: 3 Member
    #3
    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
    lawyerguy Member Posts: 3 *
    #4

    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
    chanmak44 Member Posts: 3 Member
    #5
    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.

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