Hi everyone
I hope it's okay to post this here, given that I no longer have bladder cancer and I didn't have muscle-invasive bladder cancer. I just could really do with talking to literally anyone who gets it.
It's been over a year after I was discharged and told the chances of the cancer coming back are very low and I'm only now beginning to process what happened. I know I should be happy but I have these moments of real sadness and exhaustion and it is all hitting me for the first time.
I was diagnosed with bladder cancer aged 21 while studying at University and it was very unexpected. I had a cystoscopy under general anaesthetic where they were very surprised to find a tumour - I had TURBT and I was given mytomycin. I had been told that it would just be a check-up to rule problems out so it was quite surprising to come round some hours later. I was on my own in the hospital, catheter in, in pain while I tried to work on my dissertation which was due that week, and then I went straight back to halls and continued studying. Nobody ever told me the TURBT/mytomicin might leave me with pain or that I might need to take things easy, so I never took a break, never really processed it, barely even realised I'd been given chemotherapy to be honest. The cramping pain was initially so bad whenever I went to the toilet I would black out, and I was bleeding quite a bit (later found out that wasn't usual) and I had an allergic reaction to some of the medicine - but I just carried on as normal. The next week, I met the surgeon who, very gently and kindly, told me I'd had a medium-sized, aggressive but non-muscle invasive cancer.
Later that week, I sat my exams and sat exams for the next three weeks. I vividly remember telling myself 'If I let myself think about this, I will fall apart and I can't afford to fall apart right now' but I also think maybe I was underplaying it in my head.
My close friends and boyfriend knew but they were also sitting their exams and, to be honest, I don't think they knew what to say so nobody said anything. My parents were worried but I kept brushing them off. Basically, I never really talked about it. I never let myself process it or be sad or ask questions.
Every 8ish weeks, I had another cystoscopy check-up under general anaesthetic (I think because of my age), and sometimes TURBT/mytomycin was put into my bladder again because they had found something else, so there was more pain for a whole. But then thankfully I had 6 months of clear check-ups (all general anaesthetics), so I was told to wait 6 months and come back for a 12 month check-up which thankfully also came back clear! Because of my age that was literally it and I was discharged with no need for any further check-ups. I was just very glad it was all over. I didn't ask any questions - despite the fact the mytomycin had completely messed up my periods (I now bled for months at a time), which I mentioned.
Because the mytomicin was put into my bladder, it was right next to my ovaries. I had anovulatory bleeding so much of the time and was told it might cause me to go into early menopause. It was awful, but I never really saw a doctor about it, never had anyone to talk to about any of it. I had a laproscopy to check on whether it left too much scar tissue around my ovaries which could have stopped my ovulation, but again I never really asked why that was necessary and never really processed the fact it would entail keyhole surgery. Different doctors kept saying that only older men get bladder cancer, but I was 21 and female and that made me feel more alone.
Anyway, now it's been a year after that and it keeps hitting me and making me feel really low. Sometimes I still get the same pain which was the reason for the initial cystoscopy (which sort of knocks the air out of me when I stand up after weeing? idk if that's normal) and I feel worried again. I feel like it's too late to talk to anyone about it? Also as cancer goes, I had things so incredibly easy, I feel I'm not being fair to complain when so many people have it so, so much worse (and I am sorry if this post is annoying or I seem ungrateful for that reason). I just feel very alone. Any comments or advice would be hugely welcome, did anyone else experience this?
Hi and welcome to the group. Where to start ? Firstly good to hear you are currently clear of cancer. It was once was classed as an older persons disease, but we are seeing more and more younger people on here. Not taking a break after your TURBT wouldn't have helped, but well done on getting back to your studies. It is difficult for close family and friends to understand. We know that the niggles never go away and difficult to let loved ones know how we really feel. That's where this forum comes good. We understand. It is unusual for Mitomycin to have the effects you have had, but everyone is an individual and the anaesthetic and treatment affects people differently. Always someone here with different experiences, so feel free to ask questions or just get things off your chest if you want. I hope your exam results are favourable. Best wishes.
