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Bladder Hemangioma

powermom
Posts: 22
Joined: Oct 2013

HI - bladder hemangioma - arteriorvenus malformation kind. Did anyone hear of it? From what i hear and read it's extremely rare. Uro aleady biopsied, fulgurized it. The clots keep coming with gross hemautria. They want to fulgurize again. Would tthat be the righ tthing to do. Thank you all.

Lazy_Bones's picture
Lazy_Bones
Posts: 13
Joined: Jul 2015

I'm not a doctor - I'm a cancer survivor. What they're trying to do is seal off the open blood vessels to stop the bleeding. That's the first thing to do. The tumor is active if it's bleeding. Did the biopsy indicate the invasion into the bladder linings? If it's through the muscle, it's a new ball game. If not, maybe a turbt (resection) would be beneficial. Maybe BCG. ARe the doctors at a NCI-recognized facility? You want to deal with Urologists and surgeons who are very familiar with this condition. Also, if you have doubts about the pathology report, you can have the doctors send the slides to John-Hopkins for a second opinon - JH does this all the time.

powermom
Posts: 22
Joined: Oct 2013

Hi Lazy-Bones thanks for the answer. It says involvement of lamina propria. No one said a/t about it being invasive. Is this invasive or not?

The biggest issue is that this is extremely rare 3 different urologists chimed in and none of them ever saw this, it's about 1% of population, you cannot even really find on the internet explanation about it. That's the scary part. They already fulgurized it twice. What's the deal? How many times could they do that w/t harming the bladder itself. She is in her early 30's so it's  big concern of QOL. It came back as not malignant. Aypical cells favor reactive changes.

How can I possibly get to someone that has dealt with that? In JH if I just call who would look at this? Is there cost involved? Thanks

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