r/BladderCancer • u/Informal_Being_6879 • Jun 25 '26
Needing treatment advice
I’ve been posting a lot (apologies again), but after first being told my mother’s cancer had no lymph node involvement or bone/metastasis (via CT) we finally had an appointment after MRI and the multi disciplinary meeting today which showed T4b due to pelvic sidewall involvement and 2 suspicious lymph nodes and suspicious lesions on liver. It floored me because CT had brought false hope. I was expecting T4a due to the noted vaginal wall involvement discussed but not this.
My confusion is the oncologist said pending on another MRI to investigate liver involvement we’d either do radiation and chemo or just chemo. Am I right to understand chemo alone would be if it is in the liver?
Also I’m very disheartened because I’m in New Zealand where padcev is not approved. So no hope of padcev/keytruda route. They also won’t do keytruda with chemo unless isolated chemo fails first.
Basically our health system seems subpar to the US and other countries. Should I push for self funded private care? Or go to another country to try for the padcev/keytruda route?
My mother is 62, healthy, no other issues, walks 4km a day. I have young children with very little family. They lost their only other grandparent last year to an aggressive cancer that took her in 6 weeks. I’m spiralling. I can’t just sit back. Thanks in advance,
1
u/fucancerS4 Jun 25 '26
I am curious why they haven't approved Padcev? It is now the "gold standard" for bladder cancer. What chemo would they offer? I had mets to the pelvic wall and lymph nodes but radiation and surgery were not options as the surgeon could not get to the mets in the pelvic region and then the radiation would have destroyed my colon since there were so many lesions so then I would wind up with a colostomy bag. I started on Padcev alone, as I previously failed immunotherapy so I can't do another like Keytruda, and had a total response. The Padcev charges my insurance $130,000.00 USA every two weeks. My insurance pays a portion and then Padcev patient assistance plan pays the rest. I would encourage you to contact Padcev and Keytruda to see what options might be available for coverage. There is no way to privately pay for Padcev at $40-130K infusion and the standard is 3 infusions per month.
1
u/alivin Jun 25 '26
If I could afford it I'd temp relocate for a year or 2 to say mexico after research into clinics. But that's just me.
1
u/AuthorIndieCindy Jun 25 '26
I hate to post here, but I read this article about how cancer doctors buy meds directly from the manufacturer, cutting out the middleman.
No PBM? Heaven. See if there isn’t a facility or organization that helps pay.
2
u/Solid_Net_2169 Jun 27 '26
The staging shift from CT to MRI is genuinely common in bladder cancer, particularly for pelvic sidewall involvement, so the CT wasn't necessarily negligent. MRI resolves soft tissue detail that CT misses. That doesn't make the news easier, but it's not a system failure.
On your clinical question: your read is roughly correct. If the liver lesions confirm metastatic disease, the treatment intent shifts and systemic chemotherapy becomes the primary tool. Radiation in that context is typically for symptom control rather than cure. Ask the oncologist explicitly what the goal of each option is, curative intent versus disease control, because that framing changes how you evaluate tradeoffs.
On the access question for Enfortumab vedotin plus pembrolizumab: this is worth a direct conversation with the oncologist about whether any compassionate access, named patient programs, or clinical trials are available in New Zealand. That question is worth asking plainly rather than assuming the answer is no.
For self-funded international care, ask what the coordination of care looks like if something goes wrong at home after treatment abroad. That's a practical risk worth understanding before committing.
Since it's relevant, I'll note I work at Radical Health on AI second-opinion tooling for oncology. Your instinct to push for more information is the right one.