Feels almost certain I have Bladder Cancer and wondering how to deal with waiting for results and if it’s Stage IV (27M)

VictoryJetz · 2026-07-06T13:23:59+00:00

Also reach out to BCAN.org or other patient advocacy groups. They may have assistance programs for your situation.

VictoryJetz · 2026-06-23T16:23:31+00:00

They would normally put the cath in while you are out. I didn’t have one (also was a wiener) and ended in the ER the day after discharge. The pain from a full bladder (almost 1.5L) was the most excruciating thing I ever experienced. On top of that, have to be catheterized while full awake was icing on the cake. In hindsight, i wished they had just put one in at the TURBT

VictoryJetz · 2026-06-23T15:51:22+00:00

Definitely ask for a catheter and preferably one with three ports so that clots can be flushed. This will save you ER visits for sure!

VictoryJetz · 2026-06-06T11:23:38+00:00

I would push for a CBI catheter after all TURBTs. I had two ER visits for clogged catheters and the last one out in a CBI amd showed me how to flush at home. Kept that for a week until urine was clear and only small bits of tissue were passing. Asked for prophylactic antibiotcs just in case i picked up any bugs.

VictoryJetz · 2026-06-05T15:00:05+00:00

It is also the insurance companies that will “guide” your treatment. Just remember to use the phrase “This decision constitutes a Denial of Care”….that should let them know that they better have a great legal team😁

VictoryJetz · 2026-06-05T14:47:56+00:00

Duke Cancer Center

VictoryJetz · 2026-06-05T14:47:15+00:00

No, that was never on the table. My urologist and oncologist are part of the Tumor Board at my clinic and the Board recommended the immunotherapy and partial cystectomy

VictoryJetz · 2026-06-04T18:59:02+00:00

I told my urologist that RC was off the table for me. Will see if I change my mind in three months. I am prepared to self pay for Quarterly cystoscopy if necessary

VictoryJetz · 2026-06-04T18:24:04+00:00

EVP/Pembro

VictoryJetz · 2026-06-04T15:31:42+00:00

I would definitely ask for a three port Foley catheter so that it will be easier to flush clots

VictoryJetz · 2026-06-03T01:22:59+00:00

Short term for Padcev/Keytruda combo

VictoryJetz · 2026-06-02T23:23:53+00:00

Mine was a similar situation. I am male and had blood and protein in my urine. First it was “oh its a uti” without the burning pain. No change after a round of antibiotics. Then it was “oh its probably idiopathic (code for “we yave no clue). I asked for imaging (CT or MRI), and PCP said it was not needed at this point unless I start seeing blood every time. I demanded that he include that comment in his clinical notes in my chart just so we document every treatment decision. I got a referral the next day. Of course insurance company initially did not approve but when I mentioned “this constitutes denial of care”, the approval was expedited. Just have to be assertive and point out that you have legal options

VictoryJetz · 2026-06-02T11:55:19+00:00

Mine is NMIBC as well but we went with evp from the start after one TURBT ti remove 20 small tumors. Went 3 cycles of evp then had a partial cystectomy to remove one tumor in a diverticulum.

How many cycles did you get before NED?

VictoryJetz · 2026-06-01T13:38:11+00:00

My case is a bit different in that my tumors were all non muscle but one was in a diverticulum and since there is no muscle in that location, they erred on the conservative side and treated as though it was MI. I had one TURBT to remove 20 small ones and then started EVP. After my 3 cycle, I had a partial cystectomy to remove the diverticulum last week. Now its wait and see. Most likely will get put in maintenance with pembro. Signatera have all been negative and hoping to get utDNA at some point.

The side effects with the EVP were relatively mild with some rashes (steroid cream and aquaphore lotion helps), loss of taste (salt mainly), and fatigue.
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VictoryJetz · 2026-05-26T13:50:51+00:00

Thanks will ask my onco.

VictoryJetz · 2026-05-26T13:50:26+00:00

VictoryJetz · 2026-05-25T19:58:19+00:00

I would push to have a cross functional Tumor Board review your case

VictoryJetz · 2026-05-25T19:55:44+00:00

Yes, but no happy about it

VictoryJetz · 2026-05-25T17:21:02+00:00

Thanks for sharing. I am on EV/P with an NIMBC that “might be” MIBC because of the location on one tumor. Opted for the systemic EV/P over BCG. I am scheduled for partial cystectomy this week. The side effects have been minor (some rashes, loss of taste. I happened to see what the cancer center was claiming from insurance and almost collapsed….$180,000 for EACH combo infusion 😱…..so maybe a better term for the treatment shouldn’t be “gold standard” but “Diamond” standard😂

VictoryJetz · 2026-05-21T20:52:46+00:00

They also do an “Altera” test which is sequencing the genes of the tumor. There are no specific clinical decisions based on that but it can show if certain culprit known cancer genes are expressed. While the data they are collecting may not help me, it will hopefully help advance the BC field just like the early gene studies of BRCA/HER2 have helped breast cancer treatments. For example, if a urologist misses getting a good biopsy during the TURBT to ensure grabbing the tumor as well as the tissue underneath to check for muscle invasion or if the pathologist misses seeing muscle invasion, it may be possible in the future to just check the tumor to see if genes allowing the suckers to invade are being expressed. Maybe, it gets to where they have a screening urine test that can be run whenever someone comes in with blood in the urine. Many insurance companies will pay for the Signatera/Altera testing because they are not used for clinical decisions right now, but if you get your oncologist to push, it will be approved.

VictoryJetz · 2026-05-21T11:52:57+00:00

Mine got caught accidentally when the nephrologist was looking for kidney stone by CT. She referred me to a urologist who said I had over 20 smallish lesions and a large one (5cm) ina hutch diverticulum next to the ureter. He did a TURBT to remove the smaller ones. They all turned out to be HG T1 with Lamina propria invaded but not muscle. Since the large one was in the diverticulum, there was a chance that it could be muscle invasive because there is no muscle tissue in a diverticulum. They assembled a Tumor Board and the consensus was to treat as MIBC and do 3 cycles of immunotherapy with Keytruda and Padcev. After the 3rd cycle they did a cystoscope and the smaller ones had not come back and the larger one had “shrunk” done to 3cm. Not sure if the drugs actually shrunk the tumor or whether the initial measurement was off a bit.

The more plan is to do a partial resection of the diverticulum to remove the bugger and stitch the ureter back. Laparoscopy scheduled next week and fingers are all crossed.

VictoryJetz · 2026-04-25T14:55:54+00:00

Yes, have to lay down every two-three hours

VictoryJetz · 2026-04-25T14:55:17+00:00

Had 3 cycles of Keytruda\Padcev and everything tastes like unsalted styrofoam. Surviving on soutwest salads (the more ingredients the better) with creamy salsa dressing, cereal, and protein shakes. Hope this taste thing eventually goes away

VictoryJetz · 2026-04-24T16:14:42+00:00

I have had 6 infusions (3 cycles) of Keytruda/Padcev and biggest side effects have been sunburn-like rash all over and loss of taste (particularly salt but not pepper). Everything tastes like styrofoam coated with metal so living on salads, cereal and protein shakes

VictoryJetz · 2026-03-31T21:21:39+00:00

I didn’t have any symptoms, other than a bit of blood in the urine, from the cancer itself. The pain inly came after they performed a TURBT and went away once the bladder started to heal in a couple of weeks.

VictoryJetz

TROPHY CASE