Bladder cancer

Hello all

I am a 48 male living in dagenham essex ²

It tore me apart looking at the video screen whilst camera inside , 4 tumors were there .. flat egg shaped . I have had turbt on 20th November saying it is localised to right wall of bladder.  had 1 dose of chemotherapy blue bottle for 1 hr .. waiting now to see if its spread .. I know its only been 3 weeks since removed but I am worried if it is spread.  Lockdown is looming and it seems I am not getting any reply from hospital .

I have been fobbed off many times by GP and can't get hold of hospital wing . 

I have been back at work for 1 week Construction site manager.. but seems as though I still have same symptoms as before peeing every hour and painfull lower back pain and under rib . I have had no one sits me down and explain or advice what is expected.

Is this usually how it is after surgery.  I had to get surgeon to advice what he thinks but obviously he can't be definitive as waiting still for results to come back.

Any info on symptoms expected after surgery would be appreciated. 

Thank you in advance 

Terry 

  • Hello and welcome to the group, although sorry to hear you are having post TURBT discomfort. Back pain and frequent urination is common after the op, but usually subsides in a week or 2. It takes up to 6 weeks for the wound to heal fully and it is not recommended to do any physical work in that time to avoid aggravating the wound. Waiting for results is always an anxious time. Pre Covid, most cancer patients were allocated a dedicated nurse (CNS) to contact with any concerns, but most of these have been re allocated to Covid duties. You could try calling the urology secretary to get an update. There is always the possibility of an infection following surgery, so it may be an idea to drop a sample off at your GP for testing. In the meantime, it is important to drink plenty of water. 2/3 litres a day is recommended to keep flushing debris out. Best wishes.

    Best wishes to All,   rily.

    What is a Community Champion ?

    • Hi Terry sorry you are going through this it is the most stressful and anxious time for you .. I had my turbt Feb 1st and was called back to see the specialist about 3 weeks later some are contacted by phone to tell them results.. once you know what you are dealing with a treatment plan will be put in place and I found I calmed down when I knew something was being done to help me .. I was diagnosed with cis bladder cancer and I am having bcg treatment this is put into the bladder like you had after turbt .. I have to go for cystoscopy every 3 months to check my bladder but I'm only in the appointment about 30 mins .. I know it's so hard and you just want things to go back to normal but please try not to make this the only thing you think about it will really pull you down ..try to take one day at a time and not think too much about all the negative things .. after the turbt your back and bladder will give you pain ...you haven't got a visible cut but your bladder has had a bad going over so you're bound to be feeling aches and pains ..take care and look after yourself xx you will deal with this...like us all on here this is the worse part waiting for diagnosis and your mind going through all the worse outcomes x wishing you the very best Tina 
  • Hi Terry 1,Welcome to this friendly and supportive group.Most people find that this is the most anxious time waiting to find out what is going on.Once your bladder has settled from the TURBT and you have a treatment plan you should feel better.It is awful not knowing what to expect after tests but there is advice here so feel free to ask questions.I’m sorry you have been fobbed off by the dr.Sadly that does happen but it sounds like you are on the right track now to get treatment and help.Best wishes Jane 

  • Thanks to all for your advice and thoughts.

    I can be a moaning old ... at the best of times. 

    I will keep onto the urology secretary but i realise they must be so busy .

    Thanks again speak soon

  • Hi Terry

    You are not a moaning old ...

    You are highly stressed, waiting for results is a stressful time.

    I hope you get results soon

    Love Inanna x 

    I know that I don't know
  • Thanks inanna

    I am angry . ... I can kind of understand why .. I have been told so .. I haven't really left the house on my own as I don't seem like it's worth it all my mates either drink or smoke (even the funny fags).. except when I go to work .

    I watch the news and see people moan about various topics and it makes my blood boil . Wasnt really like that 2 months ago .... suppose giving up smoking and going cold turkey hasn't helped. Still at least I catch myself or my partner nudges me and I realise what's it all about .. me taking my frustration out on everything else don't solve myself.. well so I have been told. 

    At least I have a real staunch partner.. sometimes I can see how hard it is for the person  sitting next to me, what they must be feeling after I say hurtful feelings about what if...

    Anyway I can babble on for millennia. 

    One day at a time and thanks again for the kind words and thoughts. 

    Terry 

  • Hi Terry

    I have been told that it's after the treatment that the anxiety really kicks in. I have found that since my diagnosis in March and TURBT in April I have less patience for people around me complaining about the little things. I found myself screaming on the inside with frustration. 

    I have distanced myself from some friends but force myself to stay in touch and meet up. Once I'm out and amongst friends I'm fine. 

    As for the frequent urination, here I am 8 months on and I am still have some bladder discomfort and urgency. I have had to keep pushing to get this treated as I was told by the urology consultant to put up with it (at least the tumour has been removed) and the continence clinic is closed due to covid. 

    It does get better, but I would definitely recommend telling people how you feel. My nurse practitioner  has been fantastic and she checks in with me fortnightly. I am now on a new medication for the bladder irritation and feel like my life is coming back. Grinning

    Just be kind to yourself. You've been through a stressful time.

    Sending love to all

    Clare

  • The only side effect that troubled me after a TURBT was that when they removed the catheter the following day, I couldn't pee to save my life.

    I think the trauma caused by the procedure, with a degree of discomfort down below, made me tense up. I think they call it guarding, the body is reluctant to work, coz it might hurt more! So reluctantly, I had to have a catheter put in again, so I could get home. Then at worst I had to put up with the appendage for at least 2 weeks til the clinic appt to remove it again. However, a follow up appt with the consultant came a bit earlier, and it was removed then. I was a good boy this time, and duly produced the required volume!

    KidneyBeen

  • Trying to get things sorted through this pandemic is proving to be an absolute nightmare.. 

    Dagenham East London

    I have been waiting for a chest ct scan so I can get results from surgeon. Repeatedly calling them daily getting pushed from ward to ward.. it is a struggle not because I am annoyed but I know everything is stretched.  But I spoke to a very friendly admin that advised it was wrongly  put on a waiting list ... we pushed for a quick response and I had it Friday just gone .. I now hope I can get in to see surgeon this week, get results and try to find out what is happening within me.

    I am getting same symptoms returning 3 to 4 weeks after turbt operation which is now worrying me and its the unknown and the time of year plus covid

    I just need to write this out as it's constantly on my mind 

  • Hi Terry1

    Ive had symptoms since the TURBT which are now settling with medication. 

    unfortunately I have had to chase and chase for follow ups, COVID is definitely causes chaos but I am grateful that it was 5 weeks from diagnosis to TURBT.

    finally......big shout out to Dagenham East. I spent the first 21 years of my life there. I lived near May&Baker which I know is no longer standing. 

    Sending love to all 

    Clare