Recently diagnosed

  • 4 replies
  • 78 subscribers
  • 401 views

Hi All, I have been reading through the forum this evening and decided to sign up and be brave and say hi . I am 49 and was diagnosed a few weeks ago . I had a TURBT last Friday and now just waiting biopsy results to know stage and grade although they are hopeful they have caught it early. I was shocked to say the least when I had the cystomony ( not sure I’ve spelt that right) like everyone I’m sure . The first few days I was asking why why why how come and so forth, it was driving me crazy. I am trying to stay positive and like I’m reading in the forum it’s the unknown and the waiting that’s driving us all insane!!
I’m recovering from the surgery well and get my results next Tuesday where I will find out next steps ( so anxious had a couple of meltdowns here and there)  . I also have a CT scan of my upper lungs this Friday as want to be sure all is good . I had a kidney CT with dye etc few weeks ago following blood in my urine and repeat uti s , this is where the suspicious tumour was picked up fortunately. I’d been getting aches and pains and tiredness however just put everything down to post menopause but something made me push to get checked further and the gp I happen to see was amazing and pushed my Gp practice for a 2 week referral and then everything seems to have been like a whirlwind although I can not fault my hospital who have moved fast with all of this Caggs  x

  • Hi. Sorry to hear of your diagnosis. Yes everyone on here at some point have and are going through your exact feelings/thoughts. 
    your story is similar to mine, I thought my symptoms were due to menopause, repeated UTI’s. I too was referred and had scans bloods and ultrasound etc. From TURBT until you get your results is a very trying time. I too had several breakdowns so you’re not alone and I know exactly how you feel.  This time last year I was in your exact position and 2 weeks ago I had the all clear. 
    I had a cystectomy and a neo bladder and if there’s any questions you would like to ask then feel free. 
    I suppose until you get your results you won’t know what plan your urology team will put in place for you. You’ve come to the right place to  seek advice and to ask any questions. The community on here are fantastic. 

  • Hi  and a welcome from me. Your story will be familiar to many of us. It seems like you have been fortunate to have a proactive GP. We know many ladies are often fobbed off with gyno problems before being referred. Scans are routine just to make sure nothing else is going on . No point in thinking why, as besides the usual smoking etc., there is no obvious reason. Take things one step at a time. Good to know you have an appointment for results as some people wait weeks. Just remember, BC can be treated successfully. Best wishes.

    Best wishes to All,   rily.

    Community Champion Badge

    What is a Community Champion ?

  • Hi just to say welcome to the group xx I was also totally shocked to find there was a problem on my cystoscopy..I had had a streak of blood in my urine and went to Dr to check out my uterus as I had finished my periods for over ten years..nothing showed up on the ultrasound but the Dr wasn't happy and wanted me to have my bladder checked..I nearly cancelled the appointment as I hadn't had any more blood but luckily I didn't and was really shocked when urologist could see something ..that was 3 years ago I was diagnosed with cis non invasive bladder cancer after the turbt ..I have had 15 treatments of bcg into my bladder and many cystoscopys..thankfully I have been clear but will have to keep having  checks for a good while which I really don't mind ...I hope all goes well for you on this unexpected journey...I had my turbt results in 3 weeks and started my treatment soon after ..take care and keep positive love Tina xx

  • Hi Caggs,Welcome to the group.I hope you will find it helpful and supportive.Best wishes Jane x