Newly Diagnosed

Hello Mum to Maddie and welcome to the group. We know how you must be feeling. The early days of uncertainty and not knowing can be the worst. There is a lot to process. A follow up TURBT is to mop up any residue and get a more accurate picture of what they are dealing with. A CT scan is standard just to rule things out and add to the picture. As you say, the results determine the next step. Many people go on to have successful BCG treatment while others choose to have removal to help prevent recurrences. It is a personal choice. Early days yet for you and the trick is to take it one step at a time and not to overthink things. We all think twice about the niggly aches and pains but usually nothing to be concerned about. Lots of experience here to answer any questions you may have. best wishes.

Hi Mum to Maddie,Welcone to our friendly,supportive group.I hope you will find it helpful and that it settles some of your fears.It’s never easy at the beginning as it’s all new and unerving.People tend to feel better once they know exactly what they are dealing with and what can be done to help.We are all at different stages and have gone down different treatment paths so there are plenty here who can answer questions.Best wishes Jane 

We're all familiar with the fear and uncertainty at this point. What you are experiencing is indeed normal. The CT scan is standard, just to ensure the consultants have all the info to advise as best they can, which is the most appropriate treatment. Yes, the options you currently have apply to T1 (staging). If the cancer is found to be deeper/elsewhere, the treatment options would be different. There will be a Multi Disciplinary team meeting to review all the results and advise on best options.

When I was in the same position, I was hoping that BCG would be possible, but actually after mulling it all over, looking at pros & cons, risks & benefits, I opted for surgery for best chance of cure (among other reasons).  ( I'm now 12 years post op. ) 

Best wishes that all goes well for you.

Hi Mum to Maddie. I sit on this forum 5 years after my OH's bc at G3 Pta, [so marginally less than yours] was sorted. He's now on 6 monthly flexi cystoscopies which don't bother him at all. One reason I stay is to tell you that a third option exists. It is Mitomycin chemo given into the bladder just the same way the BCG is. For whatever reasons it seems many doctors do not mention this. But worth considering as it can be effective; it was for my OH. The beauty of putting the chemo in the bladder is no nausea, hair loss etc as it does not travel round the body, you just try to 'hold it' for an hour or two.

Meantime try to stay away from google etc, there is good and thorough info on here. I suggest do your best to keep busy to avoid over-thinking it.

best wishes, Denby

T1G3 is the same as me, and agree its a little disturbing at the start until you get a treatment plan.

I am a little further down the process and currently having BCG treatment .. number 5 of 6 tomorrow. I was given the choice of BCG or RC, and selected RC after discussion with the consultant after the 2nd TURBT. This was changed to BCG by the surgeon following further discussion with the caveat that if this doesn't work, we will consider RC or a clinical trial. Trust the surgeon so now waiting to finish the BCG induction course and have blue light cystoscopy a few weeks after the BCG after which we will further discuss options. If BCG works, I will have saved the bladder for now, but there is a greater risk of recurrence and progression with this route. 

I would suggest you stay away from Google, but read up on NMIBC on here (MacMillan), Fight Bladder Cancer and Action Bladder Cancer. There is also NICE guidance on treating BC which was very helpful in understanding the process and options under the NHS.