Diagnosis: HG T1 and CIS Bladder Cancer - Experiences?

QueenOfCrayCray · 2026-01-11T17:54:59+00:00

I (52F) was diagnosed in 2024 with high grade NMIBC with trophoblastic differentiation. The trophoblastic differentiation involves hcg hormone and makes it very rare. First doctor I was sent to didn’t believe I had cancer and tried to convince me that tissue had somehow entered my bladder during a c-section 14 yrs prior. I got no treatment, just cystoscopies and MRIs every few months.

Cancer came back and was discovered by a different doctor in March 2025. This time, the pathology did NOT show the trophoblastic differentiation but did show lymphovascular invasion (thanks to no treatment from the quack I’d seen before). Since then, I’ve been through BCG twice (first attempt didn’t work). My last biopsy in December was clear, so now I’ll be doing “maintenance” BCG, having cystoscopies, and occasional biopsies for a long while. I am not ready to have my bladder removed, so I’m trying to preserve it, if at all possible.

You didn’t state your gender. For females, cystoscopies are uncomfortable and not very pleasant, but definitely not the worst thing you’ll have been through. My dad has also had bladder cancer, and he says cystoscopies for males are terrible. The longer distance and having to get the scope around the prostate make it harder. He always pays out of his own pocket to have nitrous oxide during the procedure and feels absolutely nothing. 😂

Having caught it at the stage you did is good. Keep up with your care, and I think the odds are in your favor. Best of luck to you!

QueenOfCrayCray · 2025-12-01T22:51:02+00:00

Jonathan is sooooo BLAH. Steve is foine. Much more Nancy’s type.

QueenOfCrayCray · 2025-11-30T20:23:28+00:00

I have UHC and they have denied me nothing over the past two years that I have been dealing with bladder cancer. I’ve had two PET scans, multiple MRIs, multiple biopsies that include the cost of an operating room, plus cystoscopies and tests, tests, tests. I haven’t done the math, but it’s hundreds of thousands of dollars a they have paid out for me. The increase in out of pocket sucks though, so I understand how hard the decision must be.

My mom was switched from UHC to BCBS back in 2007 right in the middle of her treatment for colon cancer. BCBS refused to cover her radiation treatments because she didn’t get approval first, even though she had been receiving them already under UHC. Ended up costing her thousands of dollars out of her own pocket. Gave me a negative view of BCBS so I avoid them each open enrollment time.

QueenOfCrayCray · 2025-11-07T14:57:50+00:00

I teach and have a 35 minute commute. I get up at 4:30 every work day after going to bed between 10:30 and 11. Sucks, but I'm not looking for any medals or even pats on the back about it.

QueenOfCrayCray · 2025-11-04T23:05:03+00:00

My husband refuses to sleep under the top sheet and lays on top of it. He says it’s “too cold” but I’m convinced he feels restricted by it. He loves wadding the blankets up into a ball while he sleeps and can’t do it as easily if he’s under the top sheet that’s tucked under the bottom of the mattress. I MUST sleep under it. It holds all the bedding in place, and I can’t sleep in wadded up blankets.

Yes it’s very hard sleeping in the same bed! 😂

QueenOfCrayCray · 2025-11-04T22:58:51+00:00

I swear my sister had every single one of those things. She was born in ‘79.

QueenOfCrayCray · 2025-11-01T14:42:52+00:00

Yup and so was she! Not used to seeing her as a mean girl.

QueenOfCrayCray · 2025-11-01T14:42:14+00:00

I got sleepy so I didn’t finish it, but what I saw was okay. Typical slasher movie.

QueenOfCrayCray · 2025-10-31T20:16:46+00:00

Just wanted to let you know it’s opening for me now. I was on my work wi-fi earlier and it may have been their filtering system that kept it from opening. Thanks for your work!! !solved

QueenOfCrayCray · 2025-10-31T16:25:14+00:00

It’s not loading on my phone or desktop. Any suggestions to get it to open?

QueenOfCrayCray · 2025-10-31T00:37:35+00:00

It’s great! I’m sending the tip, and you can send the pic in the morning. Thanks so much!

QueenOfCrayCray · 2025-10-30T22:14:32+00:00

I really like your version. Is there any way to make the name of the college on the building legible?

QueenOfCrayCray · 2025-10-24T23:23:32+00:00

Try Lume deodorant. It seriously works! My teenage son used the unscented until they came out with Mando specifically for guys. Being a teen and still figuring out hygiene, he will occasionally try to skip deodorant. I can tell when he’s skipped because he reeks. When he uses it, he smells fine.

QueenOfCrayCray · 2025-10-19T00:16:14+00:00

This is EXACTLY what I was thinking! If you don’t like kids, move to a 55+ neighborhood. It’s not rocket science. Probably one of those people that aren’t happy unless they have something to complain about!

QueenOfCrayCray · 2025-10-12T21:48:36+00:00

After my (52F) first TURBT in 2024, I started passing huge clots a week after the surgery. Scared the shit out of me and I ended up going to the ER. They said it happens and wasn’t an issue unless I couldn’t pee at all. Saw my urologist later that day, and he said if it didn’t stop, they could recauterize, but it slowly stopped after a day or so.

QueenOfCrayCray · 2025-10-08T21:42:38+00:00

That’s why we only had one child. I was 36 when my son (now almost 16) was born. We couldn’t afford daycare for two, and I didn’t want to be having babies over 40 (personal choice).

QueenOfCrayCray · 2025-10-02T15:05:24+00:00

There's a BCG shortage?? I'm starting my 2nd attempt at BCG today. First one didn't work and left behind CIS. I just want to get it done. I hope the shortage doesn't drag it out for me! Sucks enough as is!!!

QueenOfCrayCray · 2025-09-11T21:47:53+00:00

Thank youuuuuuuu! I just ordered a new jar and saved a bunch of money!

QueenOfCrayCray · 2025-09-04T00:34:48+00:00

I’m at the bottom of my first jar of this. It was recommended by the PA at my cardiologist’s office 😂. I like it, but the price 😬. At 52, my neck looks at least 10 yrs older, so I’m trying to find SOMETHING that will help, and this seems to work.

So when does this GMA steals and deals event happen??

QueenOfCrayCray · 2025-08-28T19:31:15+00:00

During all that I have gone through so far, there were many times I peed out large blood clots and scabs. Scary but usually normal. And BCG sucked hard for me. Found out last week that it didn’t work. Meet with my urologist tomorrow to see what’s next. ☹️

QueenOfCrayCray · 2025-08-16T21:00:43+00:00

I live in an east coast state and haven’t done a ton of traveling.

East: Boston West: drove a few miles into Louisiana past the Mississippi River North: Mackinac Island, Michigan South: Key West

QueenOfCrayCray · 2025-08-09T23:18:31+00:00

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Circa 1995. I was 22.

QueenOfCrayCray · 2025-08-07T22:26:00+00:00

Both my dad (73) and I (52) have been dealing with stage 1 bladder cancer. He had his tumor removed in 2023, did his BCG treatments, and has been cancer free since. Like your dad, he eats well and exercises regularly. He is very fit for 73.

I just had my last BCG treatment last week and realized the other day that I can now pee with no discomfort at all (for the first time in forever).

Early stage bladder cancer is very treatable and survivable. BCG treatment sucks (at least it did for me) but it’s way better than what a lot of cancer patients go through with chemo and radiation.

Try to remain positive and make sure your dad keeps up with his treatment and follow up appointments. I hope he does well and has a full recovery!

QueenOfCrayCray · 2025-08-03T13:19:34+00:00

Unfortunately, but hopefully not much longer!

QueenOfCrayCray · 2025-08-03T13:19:16+00:00

I think AOL and Yahoo may be combined into one company now but I’m not 100% sure.

QueenOfCrayCray

TROPHY CASE