The story so far

I started a new job in October 2015 and decided it would be a good idea to cycle to work and get a bit fitter. After a couple of days I noticed that my urine was a bit darker than normal, but didn't think too much about it. Then one day I noticed a small blood clot.

This worried me a bit, so I went straight to Dr Google to see if I could find out what it was. Despite reading all the articles telling me to go straight to the GP I decided not to worry too much as I'd read one article that suggested I could have a minor trauma related to cycling.

To make things worse, my wife is a trained nurse and told me to go to the GP right away. Being a stupid bloke I decided that the best course of action was to ignore her and reassure her that it was just a cycling injury and that I knew my body best.

She even phoned the GP and told them that she was worried about me, but they can't do anything unless you refer yourself.

Anyway, the blood disappeared from my urine, so I assumed I was right and that there was nothing to worry about.

All I'll say now is, if you notice blood in your urine go to your GP and get it checked out. If you think about how many years it takes to train a GP, plus the years of experience most of them have, you'll realise that an hour or so with Dr Google is just a waste of time and energy compared to a 5 minute consultation with someone that knows what to do.

I of course learned this the hard way. Early in January 2016 I was travelling from Edinburgh to London by train and got the shock of my life when I went to the toilet and the red river flowed.

I made an appointment to see my GP as soon as I got back from London. I was referred to the Urology team and had a Cystoscopy within 3 days. I watched as the consultant took pictures of several areas of abnormal tissue and realised that what I was seeing wasn't good.

I was told then and there that I had abnormal tissues that were probably cancerous but that they couldn't be certain until they had taken a biopsy and that this would involve a general anaesthetic. An appointment was made for a pre-op assessment for the following Monday with the TURBT scheduled in a fortnight.

I don't know how it works in other parts of the country, but our hospital sends out a letter detailing the planned surgery and you have to phone in and accept it. The letter arrived on the Thursday, so I dully phoned and left my response on an answering service. I was a bit surprised when the administrator phoned me back about half an hour later. She told me that someone had cancelled their surgery on the following Tuesday and asked if i would like to take the cancellation. There's only one answer to that, of course I would.

So a week after my Cystoscopy I had my first treatment, Transurethral Resection of Bladder Tumour (TURBT) and an intravesical infusion of Mitomycin-C. There's a bit of discomfort after the operation and you wake up catherised, which was a novel experience for me and not one of my favourite experiences but not unbearable.

On discharge I was told that I'd get the biopsy results in a couple of weeks and be told about the grading and staging of the tumours. It was at this meeting that I was told that I had a grade 2 stage 1 cancer and that they'd like me to come in for another biopsy to make sure that they'd got all of the tumour.

To cut a long story short, they found that I had Carcinoma in-situ (CIS) and have started me on a 6 week BCG regime.

I'm approaching week 3 of this, and the worst bit about it is having to walk up and down the hospital corridor whilst trying to hold it in for 2 hours.

I'm well aware that this treatment may or may not work, but I've got a 10 year old son and an 8 year old daughter, so I've already decided that if needs must, I'm going for the radical cystectomy with the stoma rather than the pine box and the burny fires, 

If anyone's interested I'll post regularly and let you know how I get on and I'd love to hear from anyone else diagnosed with CIS as I'd like to get a grasp on what the prognosis is and how my treatment is likely to progress.

13 Replies

  • Like yourself I passed blood in my urine, had the operation on the bladder 30th December 2015, they could not remove all of the tumor as some had got through to the muscle, they told me it was possible I had secondaries on the lungs, I finished Radiotherapy 5 weeks ago, had a full body scan on 7th April and have appointment with Oncologist 14th April to get results. It will be an anxious wait. Keep positive it helps the body to do its bit. I am blessed with a caring wife (retired nurse) who took me to A& E they red flagged me to Urology. Listed to your wife not the Internet. 

  • I hope your treatment went well. You're right I should have listened to my wife, all I can say in my defence is that I have been trained during 32 years of marriage to ignore my wifes advice because of the number of times that she has got us lost in the car. Prior to the invention of GPS my wife would often get us lost by disagreeing with my directions and still insists regularly that the GPS is wrong. I now taje directiins fromvthe GPS and not my wife. However this doesn't excuse the fact that I should have listened to her when she was telling me what to do backed up by her training and experience. :-)

  • Glad you found your way to the doctors, Good Luck.:)

  • Good Luck with your planned treatment. 

  • Thsnx

  • Thank you.

  • Ask the surgeons about the possibility of receiving a neo bladder,it is formed from part of your intestine,and in my opinion is better than an exterior bag for the rest of your life.It does have a few drawbacks but they are managable.If you find that bladder removal is necessary it is another option to look at.

  • Thanks I was aware of the option but I also have diverticular disease so I'd rather they left my bowel intact.

  • Hi, I also also diagnosed with CIS, as well as papillary tumours (pTaG3). CIS is aggressive, but is flat & on the surface and can't metasticise. So it's crucial to stop it developing into solid tumours that invade the bladder wall.

    I've had BCG treatment for two years.  I've read that you're supposed to lie on front, back and each side for 15 mins at a time, to spread the BCG bacteria around the bladder.  I was finding it difficult & stressful to travel home after the two hours and drinking loads of water to flush the BCG out, as I was weeing every 10 mins, so managed to agree with medical staff to go home as soon as BCG has been put in.  I lie on the back seat of the car & still turn every 15 mins!  Need lots of bleach at home though to put down toilet for a while before flushing.

    I have had clear biopsies bar one, which had a very small amount of CIS in it.  However the next biopsies were clear.

    After the first set of 6 BCG treatments, you should have sets of 3 treatments, periodically for up to 3 years, and a check Cystoscopy around 4-6 weeks after each set.

    So good luck, and hopefully the BCG will eradicate the CIS and prevent its recurrence.


  • Thanks Chris. Glad to hear that your treatment seems to be going well. I'm hoping the BCG will work for me.

  • Thanks Chris, I'm hoping that I have a similar outcome but am prepared for the worst. It's how I cope. 

    I know what you mean about the bleach. luckily Tesco's are flogging it off for 19p a bottle. :-)

    I don't know about the rolling about. I'm relatively young and healthy (54) and I've been told to walk around to slosh it about. They let me out last week, so I walked round the outside of the hospital 5 times (approx 5 miles) during the 2 hours. Stopped me thinking about needing a wee for one thing and made me wonder if the architects who designed the place were having a laugh when they put the rehabilitation unit next to the mortuary.

  • Hello wac1 your story sounds very similar to mine I'm waiting to start the bcg regime and woul be very interested as to how it affects you does being female make a difference? I wish you well  with the treatment 

  • Hi Wac1 interesting post don't understand why you didn't take your wife's advice partic as she is a nurse.But I suppose we all live and learn.I hope your second stage of treatment is successful for you.I had the same first stage as you and luckily just had stage 1 cancer and follow up all clear for now.But frightening to read other people's posts and see how often it comes back,so that's always at the back of my mind.Even though I am aged 59 my youngest 2 are 9 and 7 similar to yours so I can relate to your worry and concerns.Keep strong and listen to the boss😄 ha All the best to you

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