Hi,
Been on here before but not a regular.
Diagnosed bc may 2021 G3T1, all the usual tests & cystoscopies done, TURBT etc. Last cystoscopy was July 5th just gone. all clear including urine test. There was a bit of haematuria, which they flushed with the water during cystoscopy and not at all concerned.
However was rush to hospital a week ago, with bleeding/clots and then bladder retention. Was home 3 days later on antibiotics. Went back to GP as still seeing blood in urine. Am now on stronger antibiotics but still seeing intermittent blood/clots in urine.
Has anyone experienced this at all. Im chasing urology for my checkup cystoscopy but they never answer the phone. Have not had any bcg treatments yet, despite being requested by CNS back in July. Just about fed up now. I know if the bc has returned it will be dealt with, but just wondered if anyone has experienced the constant on/off bleeding.
Thanks
Deb x
Hi Deb
I have recently had some haematuria (with no infection) and as soon as I reported that to my CNS they brought my Flexi forward and did it that week and as it was clear they then ordered an urgent CT scan just so they could check my kidneys to make sure the bleeding isn't coming from there. I had the CT scan last week (within 7 days of the request) and am just waiting for the results. Your hospital really should be carrying out some more checks as it is ongoing bleeding. I am Ta Grade 2 (high grade 2 initially, low grade 2 on recurrence) and have had 12 BCG (after 12 mitomycin initially) and have had two recurrences but all clear since March.
Hi Deb, sorry to hear you have some bleeding. Of course it could well be an infection but I think you are quite right to want the Urology dept to see you. Contact your CNS and ask for their support. That is their job and my CNS seems to be powerful at getting things speeded up when necessary. i was G2 T1 and I had 4 reoccurences during my BCG treatment 2018-2022. I would have expected you to have started BCG immediately after the diagnosis. Keep us posted. xx
Hi clifton55,
Thanks for your reply, my bc is high grade G3T1. Last cystoscopy & urine was all clear. There was small area of infllamation with a small bleed. I am chasing urology but cant get an answer. Plus, i can never get through to my CNS. I'll try again on tuesday after bank hol. But really, we shouldnt have to keep chasing. Bc is enough to cope with, without all this stress. Only time i see or speak to CNS is when im in for cystoscopy. Im waiting for bcg 2 yrs on from diagnosis. Its bad really but ill chase that at same time. Not holding my breath to be honest.
Glad to hear your clear since march.
Deb
Herothedog,
Thanks for your reply. I can never get through go my CNS always somebody else who cant access my records. I only get to see/ speak with her when im in for cystoscopy. Everybody else seems to get bcg after diagnosis. Im 2 yrs on and still waiting. CNS emailed the person/dept who does the bcg installations on july 5th but so far no reply. Ill try chasing on tuesday after bank hol. My diagnosis, tubt, 2nd look were all on time.. since then its all gone down hill. When i try calling CNS number, i just get told to call the surgeons secretary. They just seem lazy and not bothered.
Beginning to lose hope to be honest.
Many thanks Deb
DME54 . Hi Deb. Just to echo the above. Keep chasing urology, either reception or consultant's secretary. If no contact, then try PALS at your hospital who could look in to thigs for you. 2 years waiting for BCG is unheard of. Gps are not the best at dealing with bc. In the meantime as you probably know, it is important to keep drinking plenty of water to keep things flushed out and prevent clots forming. Best wishes.
Thanks Riley,
yes i am drinking plenty of water. If i cant get through on tuesday. Either urology or secretary, ill try pals.
As regards GP, The senior GP at my practice has more urgency about this than the hospital. Hes put me on co- amoxiclav antibiotics to cover me while im waiting my check up cystoscopy. It may well be a resistant infection, in which case, i dont know what happens in order to treat it.
I had 3 re growths back in march, but didnt have the issue with blood in urine.im not overly worried about it, just fed up with it.
BCG.. ive had to push for this, by writing to my consultant personally. He wrote back and agreed,the request was put in on july 5th, but still not heard anything. Ill chase this aswell when i can get through, if not ill put it all to pals.
Many thanks, appreciated
Deb
Hi All,
Just a quick update. I decided to email PALS on Monday so they'd get it today. I put everything down in a time line so they could see how long I've been waiting for BCG and their help would be appreciated.
Well, about mid morning, today, i had a call from the director of urology support to say that he'd checked my notes and could see that no appts had been made or even acknowledged.
He gave me an appointment over the phone for my cystoscopy Sept 8th at 9.30am.great! As for the BCG, he advised, that he would speak to the person concerned, and instruct 6 x1 appts to be made at a convenient time to me and that i should receive a call in a couple of days to confirm suitable times and dates. Yay!! I'm
chuffed.
What is so annoying, is that if they can do this when PALS put their weight behind it, why can't they do it anyway, without their intervention. Its their flaming job. I'm convinced, if they got their finger out and got appts allocated, the waiting times would be much shorter.
Anyway, at least its being sorted.if i don't hear about the BCG appts by Friday this week, ill be back on to this support director.
Sorry for the short novel.. could have been a long story instead...
Deb x
Hi DME54 . We have learned over the years that sometimes we have to chase things up ourselves. Different departments do not communicate with each other and the admin can be mixed and things get lost in the system. Good to know things are moving for you now. Best wishes going forward.
Well done for chasing! We definitely do need to keep our eye on the system, it’s overloaded as we know. Good luck with BCG. Once you start this treatment you should get to know the Urology nurses pretty well, which really helps. Keep us posted on your progress? Sending love Hx
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