Bladder Hemangioma in young woman

Jack you right. It makes a lot of sense. Actually just one more thing this last bleeding is 6 weeks from the fulguration.

The first 10 days - weeks ok, but 6 weeks later? And large clots were passed because she drank like a camel. That's weird. Just to vent, what really bothers me is that he was so blase about it, and the more i dig the more I see how uncommon it is, so how on earth does he have the right answers.

I am leaving soon to the appointment, so thanks for caring. If there is a bleed from the kidneys,ureter is there any BT that shows that?

First the first place added an addendum to the biopsy saying that what they saw as positive for malignant cells at the first cystoscopy 2 weeks later they added that it's aypical urothelial cells, favor reactive changes. Don't worry no one had decency in letting us know, i happen to be looking at the portal, and I saw this.

The problem is when you enter the black hole of Hospital politics, and being that most docs are bought off from these conglomerates, it's hard to switch to a different doctor. The white wall is extremely powerful, if you so much as look at my patient....yes, it's a sad story. And to go to a different setting, which i am looking into anyway, it's just harder because if she ends up in the Hospital due to urological issues and all the docs she knows are in the other place...you understand it becomes a hardship.

I spoke to a friend from a friend, he is a urologist he told me he never saw such a situation, and he works in a prestigious Hospital, he said i should ask about embolization. And i was reading about YAG? Those are my hope if it's indeed from the hemangiomas etc...I would love to see if if someone knows of an expert in this. It's extremely rare i read. Bladder Hemangiomas throughout Google when they do see it it's in babies if they are bleeding, this type AVM it's extremely rare.Crazy, crazy. That this should happen out of the blue. One doc threw in that it could be from Cytoxan she had years ago. I don't buy that. As this would be cystitis caused by Cytoxan, not that I respect them, because those 2 doctors were not chosen, they came in through the ER, but both docs from different places said it was Hemangiomas they saw in the cystoscopy.

Tob4,

I will rephrase. I offer two things to consider. Things I have learned from 2 years of bleeding with urinary tract cancer.

There are things you can or need to expect - a re-bleed following cautery, at about 10 days to 2 weeks or so. You twice described such timing, hopefully you were advised to expect some bleeding. Sometimes it is necessary to re cauterize the bleed.

Just because blood in the urine was diagnosed as being from a hemangioma does NOT mean that all future bleeds will have the same cause. Blood in the urine does NOT have to come from a bladder lesion. A bleed in the kidneys, a kidney stone or a kidney infection can be the cause of blood in the urine. The ureters - the pipe connecting kidneys to the bladder - can also be a source of blood in the urine.

The question for the doctor is straightforward, " Where is the blood coming from and what will make it stop ? She needs a workup, a diagnosis, and a treatment plan. I hope she finds some relief soon.

Best,
Jack

Hi Jack thanks for the quick response.

I am not sure i understand, the last fulguration was on Oct. 12th, on the 25th she had a bad case of hematuria, and since then it was on/off. Last night was bad enough that she almost thought she has to go to ER again. But she started guzzling water, and large clots got through. A miracle. What's the deal with the hydration, she gotta drink all day till when??

But anyway, first of where would the blood be coming from at this point? That's what i don't understand. After the fulguration she was told to stay off hmm conjugal action for like 2 weeks, she did. But after almost 6 weeks could that be stil making these scarring come off? But maybe i was out that day in school, sorry. Otherwise what's the blood from, and the traveling to the urether? I am not connecting the dots. Please explain, thanks

Tob4,

A couple of thoughts, based on the brief description.

At 10 days to 2 weeks - plus or minus - scabs can be released from biopsy /fulguration sites, and there can be blood, including massive blood and clots (been there).

When blood continues after "all has been cauterized", it is time to question if the blood is entering directly into the bladder, or is entering upstream - in the urerters and kidneys ?

Just my thoughts.
Best,
Jack

My daughter is just 30yrs old, vibrant young woman, mother. She has metastatic breast cancer. It's in the liver,bones, skull...she is being treated.

About 2 months ago, to her horror she could not void her urine, with much pain, she had seen blood in the bowl before when she tried going to the bathroom. Anyway, the ER took about 17hrs to get to a CT. That in itself is a horror story. CT Urogram showed a hematoma 10 x 8. They decided to d o CBI for another 24 hrs, they took out maybe 40 urinals full of bloody fluid.

Next day, cystoscopy - Uro said it was 2 small bladder hemangiomas. He told me he took it out, and she should be fine. At first biopsy said it was malignant cells. Hemangiomas with cavernous features, involving lamina propria. Final biopsy, said the urine cystoscopy was atypical urothelial cells, favor reactive changes. Hemangiomas were about 1cm each posterior bladder wall. They used rollerball electrocautery for hemostasis. Complete fulguration, that's in the report. Uro said to see him again in Jan, and e/t should be just fine.

Ten days later, she again has gross hematuria, much pain, again cannot pass urine, this time she went to another ER, new URO, again as much as she was telling them and showed previous reports they insisted on doing CBI this did not go very well, and they saw she was passing large clots, next day cystoscopy again. This Uro said that the 2 Hemangiomas had remained there, probably previous Uro did not totally remove them because he was afraid in case it was malignant,

Interestingly this Uro said they were about 2-3cm in diameter, and the location is a bid different, anterior and midline the other ones said it was posterior. Weird. He fulgurated the remainder of the lesions, on the periphery of the scars was a ring raised erythemaous tissue consistent with previously diagnosed hemangioma. That was in the report.

BUT about 10 days after the 2nd fulguration, she started with on/off Hematuria, with tiny clots. Running to Uro, he said - this is very common it's gonna bleed for a long while because of the scarring. And like this is life. Very nonchalant. Believe me if it would be his daughter, i don't think he would smirk like that. She is so young, trying her best to make a life in spite of constant doctors visits, treatments, radiation. BUT THIS??? This is the devil we don't know. This is super scary, I am on constant alert she will call me to come running to the house to be with the kids so she could go to the ER. Of course it always get worse at night. Yes, she drinks a lot.

BUT what is the truth about that?? All other medical sites, it seems to say this is very rare, even rarer for a young woman. And the fact that the bleeding is still there, and the clots!! My question: Is anyone familiar with this? Any solid suggestions. She is due to visit this URO tomorrow. We are just going because we don't know what else to do, but from his point of view he already told us that nothing else could be done.

She is extremely anxious and worry, that THIS is her life now. Thank you all for your attention.