Worried about Red Patches on bladder.

Hello and welcome Jay, 

First i'm sorry i can't really help you but i do know there's people on here who will be able to.

CIS isn't a death sentence, there's people who have CIS and doing OK with treatment, if it is CIS it'll be grade 3 and if not in the muscle you would have BCG treatment.

That's IF you have bladder cancer, if the consultant says he doesn't think it's bladder cancer i would go with that, mine said what he thought it was and he was spot on.

After having a TURBT yes you can bleed for a while especially if you over do it.

IF it is bladder cancer, it's very treatable, try not to worry till you find out, i know that's hard as you always think the worse but you've had consultants and nurses saying they don't think it is so that's good.

More people will be along soon, try not to worry too much ~ Sue X

Hello Jay.Good advice from Sue.All red patches are not CIS they can be due to inflamation as Sue says CIS is not a death sentence.I would stay away fron Dr Google for now as all it does is scare and confuse you.When you do google these things I think we automatically seem to look at the worst case senario.It appears your medical team are on the ball carrying out all the necessary procedures and tests and usually they have a good idea what they are looking at.However they would not confirm one way or the other until they have your results and are sure.There is information on bladder cancer here on the site and on the Fight Bladder Cancer site.You could also phone the Macmillan Support line for advice the number is at the side of the page.I hope you get some good news following all your tests good luck Cruton 

Thank you both for your positivity. It's been rare in the last two months. It doesn't help that two of my friends, one very close have bladder cancer. Also my step-grandfather died last year from bladder cancer, so it seems I'm surrounded by it and I think that probably makes me more worried. 

I called the consultant yesterday and spoke to his secretary who said that the results had been sent back but that the consultant had not yet reviewed them. She would try to hurry him along and a letter should be sent to me soon. She said he might possibly phone me. She couldn't give me any other information. 

All the stats and studies I have read all seem very confusing. some saying that CIS will lead to invasive cancer in 54% of the time if left untreated, does that mean that some people have lived all their lives without ever even knowing they had CIS? Others say that even with treatment CIS will lead to invasive cancer most of the time (differing studies put different numbers on it) and I understand that the BCG treatment isn't available at the moment?  

I'm maybe jumping the gun I kniw, but I'm a mess.  

Jay,

As Cruton says, try not to take too much from Google. Many sites are out of date and inconsistent. When you get your results, you will then know what you are dealing with. I know it is no good me telling you not to worry. We all know how the thought of cancer turns your head upside down. Stay positive and keep us informed. Best wishes.

Hi Jay,

just to reinforce what has been said already. I have a long history of bladder cancer (I'm 53 now and started at 35...), progressing from the most 'friendly' type G1 Ta through all grades and then CIS. Luckily still superficial, but as you say a tendency to become invasive *if untreated*.

Of course I treated it and this is my fifth year of high grade/CIS, and I have completed a BCG immunotherapy course (can't advice you on the current situation re. shortage). I am otherwise very healthy and very fit - I very rarely if ever see my GP for any other stuff! Really, the most negative things for me so far have been related to treatment rather than to disease, and even those, while not a cup of tea, are not overwhelming.

There are also alternative courses of action beside BCG, notably cystectomy, which looks terrifying right now, I know, but there are people on this site who have written of their experience and are perfectly happy with their lives after cystectomy. You'll find good info reading around on this site.

In sum, CIS is NOT a death sentence. Whatever you have, and I hope you have nothing significant, you'll see that you will adapt quite quickly to your condition whatever your choice. So be positive, and absolutely don't despair whatever the diagnosis! 

Jay-- my nurse said yesterday that her new patients are receiving BCG, so  it is getting through to hospitals, slowly, but getting there. As ive had 15 up to now i'm having to wait a while. Saying that fingers crossed you don't need it. ~ Sue

That is some good news about the BCG, i hope I don't need it, but it is good news for all those that do. This experience (however it turns out) has really made me feel my mortality and look at life through a different set of eyes. Things that were important just two short months ago just are not, and the short of it is, that all I want is to be with my wife and son...everything else is just not important.

A Cystectomy looks like it ends (in most cases) your ability (in men) to have a sex life, so I would rather not go down that road. My wife is ever positive, she thinks the consultant is probably right and everything is fine, but I have convinced myself its not. Google is definitely not my friend, so much so that my wife has taken my iPad away to make it more difficult to continuously look things up.

I think that the Consultant may be just telling me what I want to hear rather than what he actually thinks until he has confirmation...I don't know, I am in a bad place right now. I feel awful posting my problems here, when so many of you have much greater concerns.

Thankyou all so much for taking the time, it takes some of the pressure off my wife, who has been absolutely amazing thus far.

Hi Jay. Please stop worrying. My husband was diagnosed with CIS 8 years ago. Had approx 12-15 BCG installations and has NEVER had a recurrence. He has now been discharged. The treatment is worse than the condition. Incidentally, at practically every cysto a red patch or patches would be seen but they were ALWAYS just inflammation. I appreciate that others have different experiences. And he smoked for 6 years of those 8. (stupid, I know)!! Keep positive. 

That is positive news. Has he actually been discharged and given the all clear?

Yes. Fully discharged. Only advice given was "Come back if symptoms return in the future". He has a very positive attitude (I'm the worrier). I know in the USA they monitor you for life I think but not in the UK although maybe different hospitals do different things. Strangely enough, he has in the past prior to Bladder cancer, suffered from depression, and he has always said that that illness frightened him a hell of lot more than cancer ever did. Keep us up to date.