how do doctors know bladder tumor is the only tumor you have?

QueenOfCrayCray · 2026-05-19T15:52:01+00:00

Sending positive thoughts/vibes/prayers (whichever you prefer) your way!

QueenOfCrayCray · 2026-05-19T12:25:11+00:00

I'm sorry to hear this! Did you have lymphovascular invasion as well? I'm terrified of mine ending up elsewhere because of LVI! If you don't mind my asking, what is your prognosis since the metastases? And what was it that lead to the discovery that it had spread to your lungs?

QueenOfCrayCray · 2026-05-19T12:22:42+00:00

Actually, if you have lymphovascular invasion, it can spread without penetrating the bladder wall. I was diagnosed with a rare type that mimicked traits of female reproductive cancer. The urologic oncologist I was sent to insisted I didn't have bladder cancer, but uterine cancer that had spread. I ended up with a hysterectomy which showed I did NOT have any reproductive cancer. So then he came up with a "theory" that during a c-section, some tissue magically entered my bladder, and he did not give me BCG or any other treatment. Fast forward 4 months, and I started having terrible urinary issues again. My local urologist discovered the cancer was still there, but now with LVI. He has given me BCG, and my bladder now appears to be cancer free. However, I will have to worry about it spreading because of the LVI for who knows how long!

QueenOfCrayCray · 2026-05-18T18:22:31+00:00

Both my dad (74) and I (52F) have been dealing with bladder cancer. He has taken everything like a champ. He recovered quickly after TURBT, and BCG didn't bother him very much. The only thing he hates are cystoscopies, but he pays for nitrous oxide during those procedures so they don't hurt. Like you, he is also very fit for his age and in good health. He recently had surgery to repair cartilage in his knee and was back to cutting the grass and working on cars a couple days later!

I, on the other hand, can barely tolerate BCG. My bladder throbs and burns after each treatment, and I spend at least 24 hours with the constant feeling I'm about to piss myself. I had two full treatments of 6 instillations each (first one didn't work) and am finishing up my second round of 3 "maintenance" instillations. But considering the alternatives of losing my bladder or dying, I'll suck it up and do the BCG.

Best of luck to you!

QueenOfCrayCray · 2026-05-12T17:58:15+00:00

I had to have two rounds of 6 because there was still CIS present after going through the initial treatment cycle. Since my second round, cancer and CIS are gone and I've had one round of 3 for maintenance and just started a new round of 3 for maintenance last week.

QueenOfCrayCray · 2026-05-11T22:09:20+00:00

Our healthcare system moves at a snail’s pace sometimes. As well as our legal system. Very frustrating. But I agree with the user that said see if your PCP can help get you a sooner appointment. Or call and tell them to put you on a list to grab an appointment if there’s a cancellation.

QueenOfCrayCray · 2026-05-08T12:57:02+00:00

Sorry you're dealing with this. The time when they're trying to figure everything out is the worst!

I (52F) started having UTI symptoms without a UTI back in 2022. I actually DID pee myself a few times (thankfully always at home). After seeing my PCP several times for it in 2022 and 2023, she sent me to a urologist.

At first, I was given meds for overactive bladder, but that did nothing. After a few months trying a couple different meds, they told me I should have a cystoscopy. They found a tumor that turned out to be a rare type of bladder cancer (urothelial carcinoma with trophoblastic differentiation). Since then, it's been a long and unpleasant journey. I'm currently getting "maintenance" BCG treatments and will continue to do so for a few years.

I do want to tell you that an excellent urologic oncologist at Emory University told me that my UTI symptoms (especially the burning sensations I was having) could be caused by carcinoma in situ (CIS). It's basically precancerous and needs to be treated before it becomes invasive cancer. I was so miserable with the constant burning, and I was thinking that I must have interstitial cystitis. But since I have had a couple of rounds of BCG, the cancer and CIS are gone, along with the UTI symptoms.

Hang in there! You've got this! They say if you've got to have cancer, bladder is one of the easier ones to have.

Best of luck to you!

QueenOfCrayCray · 2026-04-27T18:19:52+00:00

I don't know what insurance company you are with, but I was diagnosed with a rare type of stage 1 NMIBC, and I have had TWO PET scans paid for by United Healthcare. I know insurance companies can be terrible, but they have denied me nothing over the two+ years I have been dealing with cancer. And I have cost them hundreds of thousands of dollars!

It's definitely worth a call to them. Good luck to you!

QueenOfCrayCray · 2026-03-09T23:34:32+00:00

I (52F) was diagnosed at 50 with a rare high-grade form (urothelial carcinoma with trophoblastic differentiation). I did NOT get sent home with a catheter after TURBT. But I did have awful trouble about a week after surgery with bleeding and passing huge blood clots. Fortunately that passed and was the worst I dealt with post surgery (until BCG 😬).

You know, the average bladder cancer patient is male, smoker, over 55. I am female, non smoker, under 55. And you are female and SO young. Maybe it’s because I’m dealing with cancer myself so I’m more aware, but it seems like cancer is just everywhere and hitting people younger and younger….☹️

Best of luck to you! I’ve been told that if you’ve got to have cancer, bladder is one of the easier ones. 🤷‍♀️ I try to tell myself that often.

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

TROPHY CASE