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New patient looking for advice and support
Hi everyone 👋
Very new to all this…
I am (was?😥) a very healthy guy, super healthy lifestyle, no junkfood, no smoking, no drugs, no alcohol, exercise regularly…
A few weeks ago i got problems urinating, felt like a UTI on steroids. Then i noticed blood in my urine so i ran to my GP, he sent me to a urologist. The urologie doc first did a ultrasound scan which showed a tumor so he did a Cystoscopy (hurt like hell, maybe i was too tense or the doc not careful, terrible pain afterwards, felt like peeing razor blades the whole day, took 3-4 days to return to normal) which showed, in addition to the tumor, a red patch, he’s worried might be CIS (I’m still desperately hoping it’ll turn out not to be)
I had my TURBT two days ago, wasn’t a fun experience 😅. Surgery went ok, they removed the tumor and also took biopsies from 2 red areas in the bladder, will know the results in 10 days. Had CBI for about 18 hours, not painful just very uncomfortable with the thick catheter and lying on my back without moving (every tiny movement hurt so i tried not to move at all)for so long, also had some uncontrollable spasms, especially at night, like my bladder trying to push the catheter out, at one point during the night when spasming it felt like a panic attack, got all sweaty rapid heartbeat (and feeling panicky 😁) very uncomfortable, they gave me a painkiller which helped and i managed to doze off for a while.
In the morning they gave me a chemo wash, after that the catheter was removed, hurt/burnt like hell but what a relief. Peeing was painful and bloody but working so they sent me home
Slowly recovering, still sore and some spasms but bleeding less and pain is a little less as well so I’m hoping to be ok in a few days
Generally still in shock, unsure and scared of what’s ahead 😔
Any advice to help with recovery and prevent recurrence ?
Anything i should be aware of? (I’m very new to all this, trying to learn as much as I can)
Any advice/tips/insights and support greatly appreciated 🙏
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2 Replies
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Hi Jack, your experience was similar to my husband’s TURBT 4/7. Hope you are feeling much better although our doctor warned us that about a week or so after the TURBT there can be an increase of bleeding because the scabbing from the cauterized spots where they removed tissue ( tumors) will wash out. Hopefully you have results and are on your way with a treatment plan and your comeback . Carol
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Hello JackH,
Although I am not a bladder cancer survivor, what you have experienced sounds typical. If you don’t feel that the spasms and bleeding are improving with time, definitely contact your physician. Cystoscopies and TURBs are invasive procedures that may take a few days for complete recovery.
Please let us know how things are going for you. Hopefully, others will reply with their experiences and suggestions.
Caregiver for my wife, Cynthia,T2 g3 CIS 8/04
Bladder Sparing Clinical Trial
Chemotherapy & Radiation 10/04 – 12/04
Chemotherapy 3/05 – 5/05
BCG 9/05 – 1/06
RC w/ umbilical Indiana pouch 5/06
Left Nephrectomy 1/09Sign In to reply.