New to all this

Hi Mitchem and welcome to the group, although sorry to hear you have been diagnosed with bc, but many of us have been there and know how you are feeling. The early days of uncertainty and not knowing can be the worse. A follow up TURBT is par for the course and not usually as severe as the first. Checking they have missed nothing and biopsies give a more accurate finding. You may also have a CT scan which is also routine. This is to check there is nothing else going on and gives them more of a picture. The stage and grading can determine the next step. Many here have had successful BCG while other have chosen removal. I had radiotherapy as I was too far gone for BCG. That was nearly ten years ago, so try not to despair. Lots of experience here, so feel free to ask anything or just come to talk. We understand. Best wishes.

Hi,

had a CT scan which showed that it was only in the bladder prior to the first TURBT. Which is good as it hasn’t spread.

I am looking at how people deal with this and good working practices to stop the cancer diagnosis dominating everything. Any information would be great. 

Hi Mitchem, My OH's diagnosis was exactly the same as yours. It should be noted that [while some people prefer bladder removal because they are too fearful/concerned of returning cancer], for many people with this stage and grade, Mitomycin is another possible treatment. Some people's bladders and some people's cancers work better or worse with one or the other out of BCG and Mitomycin. I think this may be trial and error.

Mr.D was totally horrified when after TURBT, 6 BCG, further check revealed another new growth so another TURBT, [all of which didn't bother him] the surgeon then suggested RC =Radical Cystectomy as an "equal" option with more BCG and Mitomycin. Horrified as marital bliss is very important to him as it is to me, and despite some surgeons attempting 'nerve sparing' it is very likely to be curtains for trad intercourse for gents who have RC. So he opted for the Mitomycin. For us this has been a great result as he has been clear for about 5 years now and everything still works. 

It may be that more BCG would also have done the trick, many people have more BCG and get on fine including the odd recurrence and the treatment is just continued. At the time we didn't know that. Some get lasting side effects but I'm not sure there is any way to know if you will be unlucky in this way. The Mitomycin was very irritant to the bladder at/after each instillation but this hasn't persisted for him.

Hope this helps.

Thank you Denby, will just need to wait and see from the next biopsy and discuss the various options. It is good know that there are different options here.

Hi Mitchem,Welcome to this helpful supportive group.We are all here to listen and advise.Many people feel better once they have a treatment plan in place.Take It a step at a time.It’s understandable that anxiety is high in the early days of diagnosis.I kept busy and wrote down my anxieties.Do you have supportive family and friends ? Best wishes Jane 

I do have a number of people who have been exceptionally supportive as well as my wife, kids and mother. That is half the battle. 
also using counselling services too. 

I’m so glad you have support.

I had the same diagnosis & choice. I recall feeling sick when the consultant said it was high grade & I might need bladder removal. The second look is normal, to ensure they have the correct staging. I understand how the worry & difficulty deciding can be all consuming. Not recommended, but I spent a lot of time searching on the internet for authoritative articles about outcomes, prospects, statistics etc. Night times I listened to podcasts if I couldn't sleep. Fortunately I had some good friends & work colleagues with whom I could chat. Otherwise just keeping busy with regular interests & work. Often, physical activity can help - dancing, gardening, sport - even just punching a pillow.

In my head I was going round in circles weighing up the pros & cons - neither option especially appealing. Unfortunately, no-one can yet predict your personal chances of success with BCG. I didn't want to take the risk of a muscle invasive (possibly incurable) recurrence. For that & various other reasons, I opted for immediate surgery - that was 11 years ago. Once I had made a decision, it was like a weight lifting from my mind, although it was an unpleasant path ahead.  It is a very personal decision, make sure you have all the relevant information and you will make the choice that is right for you. Best wishes.

Thank you so much on this. I am in that odd spot of bouncing between the two on one hand thing the BCG will be great but on the other what if it comes back. I know that the bladder removal isn’t straight forward but it has a higher success rate. I will see what they have post the second TURBT this month. Seriously thank you everyone on this so far. Amazing to hear these things.

It’s a good idea to write down any questions you may have for the consultant.It’s easy to get out of the room or off the phone and think I wish I had asked that.You can make a note of any answers you get or take someone with you if possible.I was diagnosed pre Covid so my sister came to appointments.Between us we were able to form a rough idea of what to expect from the surgery.My sister asked questions I hadn’t thought of.Once you have had the second TURBT you should have a better picture of the way forward.We are all at different stages here but there is usually someone who can advise and you will certainly get support.Best wishes Jane