Hi I am new here

Hi, I started my Bladder Cancer journey in February this year with blood in my pee, Doc referred on a 2 week pathway. I have since had CT, camera, TURBT and a further Resection.

It is G3 pT1, which I understand is quite aggressive. I met with my consultant yesterday and was given the choice of removal or BCG, I chose BCG as I don't think that I am ready for a  removal.

Having now read through some of your experiences of BCG side effects I am now not sure, has anyone had BCG and not had long term issues and pain from it?

As well as all this, my wife passed away 2 weeks before the blood in my pee, the camera and CT was between then and her funeral and my TURBT was 2 weeks after.

I seem to be doing OK in myself, I took early retirement late last year, I live on my own now but have a 7 month old puppy and a 13 year old cat for company.

I try and get out as often as I can to meet with friends and do the things I enjoy.

Well that's my intro and I look forward to chatting and sharing with you.

  • Hello Boy Racer, welcome to this forum and so sorry to hear of your wife's passing. I was diagnosed in 2020 with what you have. I can tell you I did take the BCG route simply because I couldn't face such an early decision on having my bladder removed. I had 14 instillations over 18 months . As a result I developed chemical cystitis which I still suffer from. Not everyone has the same journey, I'm apparently one of the unlucky ones, others sail through without too much bother.

    I am actually sending this from hospital where I'm awaiting my annual CT scan. I had 3 TURBT'S and 3 monthly cystoscopy's. I am due to have biopsies on a couple of red patches which they believe are due to inflammation caused by the BCG but need to make sure. 

    Do stay with us here as there is a lot of help and advice from people who have been down the road you are on. Take care.

  • Hi Jacaranda, Thanks for sharing that with me, I thought the same that it was too early to go the removal route, I hope that I am one of the lucky ones. My BCG is provisional to start on 20 June.

    I will update how it goes.

    Good luck with your CT results.

  • Hi so sorry to hear about your loss of your wife .. I was the same as you small amount of blood in urine a streak I would say but my cystoscopy showed some abnormalities so a turbt was done ..I was diagnosed with cis bladder cancer like you it's a high risk non invasive bladder cancer ...I was so shocked..I imagined all worse scenarios.. this was February 1st 2021 ...I have so far had 15 bcg treatments...6 induction treatments and 9 maintenance treatments (done in blocks of 3 ) I have been back for a flexible cystoscopy (camera in bladder) 3 or 4times and thankfully all been clear ..my next camera should be end of July...the bcg treatment has been OK I done do a lot on day of treatment as I need to pee very often so like to be near toilet .. I wasn't offered bladder removal just bcg treatment but who knows what the future will hold I try not to dwell on.something I have no control over ..I go for treatment and try to enjoy my life a good friend on this forum told me worrying does not change the outcome and I have taken his good advice ... I am 66,married to Allan have 2 grown up children 46 and 44 and 5 grandchildren...we have a noisy temperamental jack russel and a very laid back cat ..wishing you the best of luck on your journey love from Tina 

  • Hi Ageing Boy Racer,Welcome to this friendly group.I’m so sorry to hear about your wife.I hope you find it helpful here,there is advice and support.Best wishes for your BCG treatment.Jane

  • Hi Tina, Thanks for sharing, I have seen so many bad experiences with BCG on here that I thought it was all doom and gloom, nice to hear some positives. Maybe one day removal may be the only option but until then....

    I have read many story's from people with a Stoma and life does go on, but not just yet thanks. 

    I am 61 with no kids but an uptight cat and a Cavalier King Charles Spaniel puppy with boundless energy!

    After my TURBT I had a catheter for 10 days, the day after it was removed I went out and bought a BMW M2, something to have a bit of fun with while I still can, hence the ageing boy racer! Chris

  • Thanks Jane, getting some good support already. Chris

  • Hi . Bear in mind that people who post here regarding BCG are mainly ones who have had some problems with it and come looking for advice. The many people who get on well with it have no need to post here. I  hope it all goes well. Best wishes.

    Best wishes to All,   rily.

    What is a Community Champion ?

  • Welcome Chris. 

    Respect for how remarkably upbeat you seem considering how cards have fallen for you recently. And good on you for that.

    I had a tumour in my bladder discovered in Feb after i'd peed blood. I have since had a turbt to remove tumour at end of March. I'm having another cystocopy this friday (oooofff)  to check it's all clear still. I also had my right kidney removed at the end of April.

    Having chosen BCG i do hope it works for you without too much side affects. If it does get a bit heavy can i borrow your M2 ?....LOL. I'll clean it for you.

    All the best...Del (Aging boy racer of motorbikes).

  • Hi Chris,

    Take a quick look at my posts, there aren't many, but they address all of the points you raise.  Of course, we are all different but I agree that many of the posts here deal with problems of one sort or another and they are a great source of information and comfort.  There are those of us who offer a view from the other side too, where everything has gone smoothly and you will see my account of my 'wondersife's' experience.  In many ways very similar to yours.

    Best Wishes

  • Hi rily, good point, I didn't think of it like that, makes me feel a bit better about my prospects. Chris