So confused here

Was that your original diagnosis before the BCG? I think sometimes the consultants forget that we patients are laymen & new to all this.

Restrict your internet searches to reputable sites like this one & https://www.cancerresearchuk.org/       &  you won't go too far wrong. 

T1G3 is very treatable, but is risky. G3 is aggressive, but T1 means not yet muscle invasive - the BCG is intended to deter recurrences (which are common). Unfortunately tumour also have  a tendency to progress & become muscle invasive.  When you have another cysto at the end of the BCG course, the results of this will determine next steps.

Surgery gives you best chance of cure, but it is a major undertaking. If the cancer becomes muscle invasive, chemotherapy plus radiotherapy might be an alternative option. If you are unsure, ask, ask, ask - any other options, what are the pros & cons, full explanation of what is entailed. You can even ask for a second opinion if you are not happy with your consultant.

You're airing your concerns here, which is good, if you feel you cannot talk to others face to face. We're not experts, but will always offer a sympathetic ear.

Hi . A good explanation from Teasswill. You are right in saying there is a lot of confusing information out there, but some of it is misleading, some of it is out of date, and some of it can be wrong, Stick to recognised sites such as the link above. It is quite common for people to look ok with cancer. It is a sneaky thing and disguises symptoms. It is hard not to try and look to the future, but there are many different avenues to go . It is best to try and take things one step at a time. Treatment is like a flow chart. You get to the end of one step and then look at the alternatives for the next step, and so on. This is a very supportive place, so besides asking questions, it is a good place to talk. Best wishes.

Dear Paul, so sorry to hear they have been trying to bully you, there really is no other fair word for it. Please take encouragement from my husband's year 2018-2019.Here goes:

He had quite similar numbers and letters to you. His bladder started off looking just like a cauliflower all over. After surgery to remove all of these growths [it's called TURBT and stands for Trans Urethral Resection of Bladder Tumours, this means "using instruments that fit through the 'water pipe' to cut away the growths"] - he had 6 BCG.

Then you wait 4 to 6 weeks to let your bladder settle down. I only found out on here that one reason for this is the bladder can have 'red patches' from the treament that can look similar to cancer so the surgeons don't want confusion.

In his case at the next check-up [Cystoscopy just means "look in bladder"] he had a new tumour. So then they said that there were "3 equal" options, more BCG. a chemo treatment called Mitomycin, or bladder removal. Now as regular readers will be bored to see, consultants do not all tell it as they should. For various personal reasons my husband would be a very bad candidate for the op and the consultant did not even find that out before he made his statement. So we opted to 'try' the Mitomycin as it seemed to us the BCG had failed.[not necessarily true but that's another story].  The mitomycin course didn't even go all that smoothly for my husband but it has totally worked and now all he has to have is 3 monthly checks unless and until they spot any recurrence; he is leading a totally normal life, he has not had to endure the embarrassment and fears you rightly talk about. Sound good? Ask for it!!!

Any doctor offering radical treament should expect to justify to you the patient why they are not suggesting less drastic treatments first, in my humble opinion as they say.

Hope this is some help, do ask any further questions you have, our hospital is useless at info and I don't know what I'd have done without this forum ie all the lovely and well informed folk on here

Denby

Hi Paul, I can't match the wonderful advice above except to say ask away with any questions and you will get advice second to none. I am a newbie to this like you, and I know how lost we can feel. 

Stick with it on here and I wish you the very best of luck.

John.

Hello Paul

Teasswill and Denby have explained the medical jargon so I'll just focus on your other concerns.

You don't have to tell anyone except your manager at work. As for the rest of the world looking at you, it won't happen as you'll look the same; even with a urostomy pouch under your clothes, no-one will know if you don't tell them because it just doesn't show. My only concession to the pouch was to wear boxers rather than briefs, otherwise I wear the same clothes as before.

Be assured that life goes on after the surgery very much like before with the bonus that you'll not have to get up in the night for a wee. 

There's no stigma to having cancer and this version can be treated successfully at your stage so take heart.

When you meet your medical team, do ask about alternative bladder sparing treatments to surgery such as radiotherapy, chemotherapy and new developments in immunotherapy such as atezolizumab.

CB