u/Dmzinvest

From “radical cystectomy scheduled” to bladder preservation — my journey with T2 plasmacytoid urothelial carcinoma (long post, looking for experiences)

54-year-old male, Italy. Diagnosed in November 2025 with high-grade muscle-invasive bladder cancer (T2), with plasmacytoid variant and focal vascular invasion. For those who don’t know, the plasmacytoid subtype is considered more aggressive than standard urothelial carcinoma and is generally associated with worse outcomes.
Neoadjuvant treatment
December 2025 to March 2026: 4 cycles of Cisplatin + Gemcitabine + Durvalumab. The response was remarkable. March 2026 CT scan showed complete radiological response — all nodular lesions disappeared. Only a minimal asymmetry in bladder wall thickness remained, non-measurable and non-nodular. No lymph node involvement, no distant metastases.
The original plan — and why I changed it
After neoadjuvant therapy, the plan was radical cystectomy at a major cancer center in Milan, Italy. I refused. I sent a detailed email to my surgeon asking whether — before proceeding with surgery — it made sense to do a re-TURBT to assess pathological response, and whether bladder preservation could be considered. The case was discussed by the multidisciplinary tumor board the same day. Their position: radical cystectomy remains the gold standard, especially given the plasmacytoid histology. But they respected my choice. They agreed to proceed with re-TURBT and plan bladder-sparing based on the histological result.
Re-TURBT results (April 2026)
The surgeon described the bladder as “beautiful and very clean” macroscopically — no visible lesions anywhere. Pathological report: ypTis — focal carcinoma in situ only, no muscle invasion. Classified as a “major response.” The muscle was present in the sample and completely free of tumor.
Next steps
Upcoming visits with radiation oncologist and medical oncologist to plan TMT (Trimodal Therapy). Hoping to start radiotherapy by end of May and complete by end of June, possibly with a hypofractionated protocol (20 sessions instead of 30-35). Open question: Durvalumab maintenance (8 cycles originally planned post-cystectomy) — unclear if/how it integrates with TMT.
My specific questions for the community
1. Anyone here with plasmacytoid variant who chose TMT over cystectomy? What was your experience and outcome?
2. Has anyone done TMT after neoadjuvant chemo-immunotherapy? Any issues with additional radiosensitizer tolerance?
3. Anyone who achieved ypTis at re-TURBT — did you proceed with bladder preservation and what happened at follow-up?
4. Any experience with hypofractionated radiotherapy (20 sessions) for MIBC? How did you tolerate it vs standard fractionation?
5. HER2 positivity (70% in plasmacytoid cells) was found in my pathology review. Has anyone explored anti-HER2 therapy in the bladder cancer context?
What I’ve learned so far
Fighting for bladder preservation when you have a plasmacytoid T2 tumor is not the standard path. The evidence is limited. But a complete radiological response + ypTis pathological response after neoadjuvant therapy felt like a window I couldn’t ignore. I’m not dismissing the risks — fully aware that if muscle-invasive recurrence occurs, salvage cystectomy becomes necessary and is technically more complex after radiotherapy. But for now, I have my bladder. And I’m fighting to keep it.
Happy to answer any questions.

reddit.com
u/Dmzinvest — 6 days ago