Waiting for results

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Hi everyone,

I came across this forum by chance and have read a lot of the threads. What wonderful people you all are!

I had my TURBT on 14/06 after a long time waiting due to many issues with GP hospital etc and have not had a very good experience. I had no idea I was having this as it was not explained to me. All I was told in the 3 minute conversation I had with a doctor in the hospital the next day was ‘it went well, I think we got all the tumours, you can go home now’ first time I knew I had a TURBT was when I read my sick note!

I have got my appointment on Thursday and have to say feel a bit disheartened reading on here that I may need to have another one before I get any result.

I would like to ask if anyone could let me know if going privately for any follow up treatment is recommended.

any experiences would be good to hear about.

trying to stay positive and hoping I may be one of the lucky 2%!

Many thanks 

  • Hi  and welcome to the group although sorry you find yourself here, but you will get lots of support going forward. Sorry to hear you have not been given much information. Some doctors are more forthcoming than others. When they did the TURBT they will have taken biopsies for analysis and you should get your results on Thursday. You should be given a stage and grade and the plan for the next step forward. Take someone with you to the meeting as they can overload you with info which can go right over your head. Also, ask to be copied in the the meeting notes as it makes things easier to understand when written down. In many cases there is a follow up TURBT and not usually as severe as the first. Just a double check. As far as going private, we have seen over the years it doesn't make much difference except for a carpet on the floor and you may end up with the same surgeon. If anything goes wrong they ship you off back to he NHS. Lots of experience here so feel free to ask anything. Best wishes.

    Best wishes to All,   rily.

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  • Hi SharonO , warm welcome to you. I would just like to ditto everything Rily said. If you are to have a 2nd turbt to check the grading, you have been through it once and you will feel a little more prepared. It is a journey of waiting and anxiety I am afraid . Waiting for results is the worst as the what ifs can take hold of your thoughts . Writing down your questions is a great idea. Please ask if you will be assigned a named nurse specialist to help you with any questions or worries you have. click on my profile to see my experience of bladder cancer so far. I still feel like a newbie as it was only a year ago, but I am doing well. Take care and keep in touch. You are among friends that will hold you steady through this 

    Much love Angela x

  • Hi Sharon, 

    Welcome to the group, but sorry to hear about your diagnosis and your experience so far.

    I was lucky to be kept very much up to date, firstly by the NHS and then privately when my Works corporate health insurance kicked in.

    I was inundated with papers, I had to sign a consent form for each procedure, had a pre op assessment so it doesn't sound good that they didn't do all this for you.

    I must admit I was a bit disappointed that I had to have two TURBTS but not everyone does. However overall it wasn't too bad. I stayed overnight for both but went home the next day. Hopefully if you have a second TURBT then this one will be smoother for you.

    I have experience of starting with the NHS, and was looked after very well. I like to think that this would have carried on had I stayed on the NHS.

    The health insurance kicked in and things did seem to move a bit quicker but not by a lot. However I have been incredibly lucky with my consultant and the medical staff. I don't think I could have anyone better.

    I'm also grateful for the parking. I know it sounds strange but the parking at my hospital is terrible. So it's the small things like this that can make a difference.

    I'm lucky not to have to pay for my treatment, but the costs can certainly add up.

    I've been very lucky to have had amazing treatment on NHS and private, so it's a tough decision I guess. If I could afford it I would probably go private if I had to pay.

    Good luck for Thursday and keep us posted.

    Trevor 

  • Hi SharonO,Sorry to hear you haven’t had the best experience so far.Welcome to the group,I hope you will find it helpful and supportive.Love Jane 

  • Trevor you are right about costs if you go private and do not have insurance. I dread to think how much I would have had to pay since December last year, 3 visits to the operating theatre, pre op assessments each time, ultrasound, CT scan , 3 sets of histology, 8 visits to the specialist nurse, many blood tests, lots of drugs, and much input from the consultants, and MDT. Tens of thousands maybe. Thank God for the NHS

  • Hi SharonO Wave 

    Welcome to our friendly group, none of us want to be here but circumstance have bought us all together. I'm so sorry to read that you have not had a very positive experience of the NHS so far. I had a dreadful time trying to get a referral to Urology, then when I did it was on the 2 week Cancer Pathway which stunned me. My hospital have been amazing. Lots of tests and appointments followed and during the cystoscopy a large tumour was seen. It actually turned out to be 2 tumours. As rily has said, if you do need to have a second TURBT it is usually much more gentle on you than the first.

    At your appointment on Thursday you will be able to ask all the questions you need (write a list) and if possible record the meeting so you can go over it again at home. There is so much information to take in. I felt I was on a roller coaster of emotions and I'm sure you do too! I was told things get a bit better once you have a Stage/Grade diagnosis and a Treatment plan in place and I have foundvthis to be the case.

    We are all here to answer as many questions as you may have. Hope all goes well at your appointment on Thursday and please keep us posted.

    Sending you love and hugs, Ade Heart️ xx

  • Hi Leo I second that, 2 turbts, 2 CT scans and another due, biopsy, camera checks, bcg it must cost a fortune, even though we are all worth it but God bless the NHS

  • Hi Rily, thank you so much for your reply and to ask to be copied into any notes, would never think of that, I turn into mute whenever I see a doctor so will take husband with me. I thought it maybe a bit quicker going privately and I am lucky enough to have private medical through work. I have to say the nurses I met when I had the catheter out after 4 days were amazing! 

  • Hi Angela, I have read your journey with this and I never realised it would go on so long, I have been a bit of an ostrich so far to be honest, but this forum is helping me to face up to things a bit more, not sure if that is good or bad, I will find out, thank you for your support x

  • Hi Ade, thank you for your support, nothing like personal experience to get the real story, Is there somewhere on here to look up what the stage/grade means once I have that information? I hope everything is going well for you x