sneaky spread to urinary system

[bikebabe]

Has anyone else had sneaky lobular spread to urinary system causing problems and not being picked up by scans? Appreciate hearing your experiences. Jx

[PJBinMI]

I was diagnosed with stage IV lobular bc 20 years ago and the first place besides my bones that cancer cells showed up was the left ureter (tube from kidney to bladder). That was about 4 years ago. I was referred to a urologist, and he removed the blockage in a relatively minor procedure and ever since, I've had the stent he put in replaced about every 3 months. I'd had urinary issues for at least a decade before cancer and was taking Detrol daily. That helped alot! But I've needed to wear an adult diaper, or undies, at night. That's a real complication! My husband found a place to buy 36 inch square pads to put on the bed and protect it from my "accidents." But my biggest issues are neuropathy and balance. I have to use a walker now. But I feel really fortunate to have lived this long and to have great family support, good insurance, and pets that I enjoy!

[bikebabe in reply to PJBinMI]

I am in awe of your resilience. Might I ask whether quarterly ct/mri scans detected the ureter cancer or was it found through a difft procedure eg cystoscopy. Where did the metastatic originally get found 20 yrs ago? Such a shock I’m sure..

[Bettybuckets in reply to PJBinMI]

You are amazing and give me hope. I think you can get those square pads at pet shops for puppy accidents. Easy peasy!

[Bettybuckets]

Bike Babe- I had been told I had ureter involvement and some as it’s but then i switched meds to xleoda and improved but today saw my oncologist and reported some bladder pain. Scans are ordered and we shall see. So I will follow along with you.

[bikebabe]

best wishes - and hope the cause of bladder pain is unrelated to any progression and treatable.