Almost pure blood and blood clots in urine

@so1frustrated Today is a big day for you. I am so glad to hear you have support right there for for you. Realize your boyfriend does want to be there with you, and it is wise he understands his ability to track conversations is not stellar. I know expressing just what is going is a great chance to mask for us Aspies! BTDT, got the T-shirt. Take a deep breath. Get some fresh air. Emily sounds like a wonderful asset for you. Do you find it easier to concentrate when you have something to do with your hands? I wear a silver bracelet 24/7, and use it to finger my anxiety away when needed. Don't think I have ever told anyone that before!

We're here for you.
Ginger

Hi, sorry so long but wanted to update. My autism super surfaced but doing better now. I have copied and pasted the report from CT urogram for those interested and who can understand it. In summary, I have a very large tumor in top part of my urethra where it connects to kidney, and looks highly suggestive of urethial carcinoma; maybe advanced. Still trying to figure out how it was missed on original CT and renal ultrasound but am concluding probably because of location.

You know me....I have researched a lot about this including high-grade tumor. Even if the odds of surviving 5 years is estimated at 10-30% I truly believe I will be in that percentage, and am willing to do whatever it takes. Hoping it's low-grade but will deal with it whatever it turns out to be. On a positive note so far it is not showing up anywhere else and even the lymph nodes for now look not to be affected.

Even if by some miracle it is not cancer, they still have to take out my kidney and urethra because of size and location, but no big deal....a lot of people are living with only 1 kidney.

Going for biopsy surgery Monday on outpatient basis, but will be under anesthesia. My daughter Krista and her boyfriend Wayne are coming down on Sunday and will be going with us. Check-in in 3:30 for now and surgery 5:30, and may be able to be discharged around 8:30 or so if all goes well. The next step will be meeting with Urology Oncologist May 21 for results before they schedule major surgery. If it is aggressive, they will want to do chemo prior to surgery....do not know for how long. I will also have a stent in my urethra until who knows when and doctor will remove in his office (no knock-out juice sadly for that one!) ANYONE WHO HAS HAD/HAS STENT PLEASE TELL ME WHAT IT'S LIKE. My only worry is will it handle large clots as have had a lot of them.

Nothing discussed bothered me up to that point until the scheduler told me I had to have a COVID swab test Friday before surgery (that's tomorrow) You would have laughed and exclaimed 'WHO IS THAT?????. Holy cow, I had an enormous autistic melt-down right in front and at the lovely and sweet scheduler!!!!! I was yelling, waving my hands and arms were flying and using the "F"-word!!!! It was like an "out of body" experience! I HAVE NEVER had a melt-down in front of ANYONE.....I would hold it in until I was alone. I apologized to her and cried and everything! She was fine with it and said, 'hey we are women...you should see me sometimes"! I just think that was the straw that broke the camel's back, but I am o.k. today. Watched some "videos" about it and talked to a girl today at our favorite vegetable and fruit stand (Joe's) who has had it twice, and feel better about it. Dave's daughter-in-law Emily was there (standing in for Dave as only 1 person was allowed to be in there with me and he thought Emily would be better at keeping track of everything said and taking notes. She told me she thought my melt-down was funny! Any, I got through that part o.k. but they had a problem drawing blood...that does not bother me at all. Brief of what they found copied directly from CT urogram report:

IMPRESSION:

Ill-defined expansile mass in the right renal pelvis and proximal ureter
producing moderate right pelvocaliectasis and moderate to severe ureterectasis
of the proximal ureter with abrupt tapering. Findings are highly suspicious for
urothelial carcinoma.

@so1frustrated Wrapping you in a big cyber-hug! No doubt your emotions were teetering on the edge, and everything overcame you all at once. And see, the world did end when you did break down like that. Did you feel a bit better when you regained your breathing and calmed yourself down?

Your attitude facing this is admirable, and shows your strength.
Holding you close in thoughts!
Ginger

Ginger and others, I have been diagnosed with high-grade urothelial carcinoma of the ureter pelvis and ureter. Just posted in hopes to have response from someone going through this. Will be meeting with surgeon this Friday and he has already said he want me to have neoadjunctive chemo (chemo prior to surgery)....I told him to please schedule surgery asap (he said at best it is at least month out) as right now do not want to chance repercussions from chemo. He is going to set up meeting with oncologist (thought he was...kind of confusing) to talk about the proposed chemo. As far as they can tell, praise God, it has not metastasized. Trying to find anyone who is/has gone through this. It is basically treated like high-grade bladder cancer......the "type" I have been diagnosed with is rather rare. Thank you all for being part of this wild journey!!!!

@so1frustrated While I am glad to hear from you, as always, I am sorry to hear you now face this. This weekend you were on my mind, and I was going to post to you. Did they give you a stage of this cancer?

You have been telling them something isn't right for a while, now. Your support network beside, boyfriend, his daughter-in-law, your own children, plus all of us here, are right there for you. Check with your medical team to see if there is any patient support group you can contact in your area. Perhaps American Cancer Society has some ideas?

Reach out to us, we're here!
Ginger

Going through same issue with 94 year old mom. WBC high , leucocites high, protein, bleeding and clots 7 days now. Initial treatment amoxicillin. Bacteria in culture negative. CT scan effectively negative - non interfering millimeter stone one kidney, possible cyst other… no pain in lower discharge or belly whatsoever. Drinking lots of water and urinating every 2-3 hours to ensure can still pass clots… No urologist review yet . Only emergency dept, and they just send us back home after tests.

@metawatch I had something very similar -- blood clots and blood in urine. Bacteria culture negative. No pain. I suggest your mom see a urologist. Let them know how much blood there is in the urine and that there are clots. It could indeed be a kidney or bladder stone, but mine was stage 3 bladder cancer. There was no warning, just suddenly lots of blood and clots. Good luck with your mom.

I just read the posts on this topic- very helpful.
In December 2022 I had sudden gross hematuria with clots. Urine culture was positive for infection and treated. In February 2023 I had a second UTI, no blood, different bacteria. Treated after 2 attempts.
I also have been treated with Cytoxan- 30 years ago. Literature states the appearance of bladder cancer can be delayed up to 38 years after treatment.
Will request visit with Urologist - I just don’t feel comfortable with the out of the blue appearance of hematuria.