T1G3p and now Carcinoma in situ

Hi Frank123, welcome to you fellow traveller. I am not sure if my words will give you any comfort, but I started with T1G3 plus CIS last year in April. I had delayed start of BCG induction, and when they did the biopsy in november i was afraid that it would have recurred…. It hadn't .
 I have had 9 BCG since then and recently had a cystoscopy that showed a tiny patch of red . Consultant wasnt concerned but biopsied it anyway. I am not going to be alarmed , and I am hoping to carry on with BCG for as long as its working. It is not clear from your post if you have had a recurrence of the T1G3 and also developed a CIS. 

Hello Frank and welcome to our friendly group. I'm sure lots of other folk will come along to give you their advice too.

I was diagnosed with G3 pT1 in February this year but no CIS. I'm also on BCG therapy. I have red patches in my bladder after the 6 week BCG induction which are being investigated on Wednesday. I was told that there is a high liklihood of reoccurrence with high grade bladder cancer. 

 Has your CIS been removed/resected during a TURBT? My clinicians say that the surgery is to remove all trace of the Bladder Cancer and the ongoing BCG or chemo is to prevent it from coming back. 

It sounds like you are being monitored very closely so you will not have to wait for too long before being checked again. Try to put your faith in your clinicians and the BCG.

Sending you love and positivity ️ 

Ade xx

Hi Ade your reply is just what i was trying to convey. Try and trust the process. It took me a while to grasp that the cancers had been removed and the treatment was to stop them coming back. I kept thinking I still had bladder cancer. It isnt easy this stuff is it . Sending love to you 

I think I would want to quiz the consultant about the risk of recurrence & progression (which I think may be greater now that you have a second type of BC appearing). Is the gamble getting greater? Should you consider cystectomy? See what they say & weigh up your options. Hope all goes well for you.

Hi Angela, no it's not easy at all! I went for my pre op today then popped into my lab to see colleagues. Its so difficult trying to explain the sequence of events since my diagnosis.  It seems like it's been a never ending 6 months of surgeries, tests, treatment and waiting for results. Very bad for the mind. I tried to put the kettle into the fridge the other day . Should not let me near patient samples yet, me thinks.

Love Ade xx

Absolutely me Ade, have found my car keys in the fridge before now lol

I think I am probably extremely lucky Teasswill to have the team I have. They are always upfront and inform me of the risks etc going forward. It honestly doesnt occur to me prompt them for information. From reading on the forum others dont seem to get the same level of communication. So yes I agree with you about risk going forward and asking the consultant. Its a good idea

Hi Angela, thank you so much for your reply, it has really helped me because it is so positive and I am so pleased for you.  From your experience,I now know that it is possible that another six BCG's can deal with the CIS. From the biopsy report  and the consultation summary it looks like it is just the CIS that has appeared as there is no mention of the T1G3 recurrence, so this is something I will need to ask. I think I have been a bit naive through all of this and now having to realise that things can get complicated and there is a lot to understand..

I can't thank you enough for your response it has really helped me

Frank

Thank you Ade for your response and it has helped me with another question that I need to ask - There is no mention of another TURB to remove the CIS. The notes say that they will re start the six weeks of BCG and  biopsy six weeks later. It has only been a few days since they told about this so it is a lot for me to take in and I you everyone on here can relate to it. I have been very naive thinking everything was sorted and it has completely caught me off guard having to get my head around all this  so ai am so grateful for you and everyone on this forum who take the time to respond and share your experiences.. Thank you

Frank

They told me at the results clinic that if the second round of BCG doesn't work, I will need to start counselling to look at my options which is unnerving in itself.. I now have reason  to be more positive following Angela's experience where it worked for her, so  I am holding onto that.. My specialist nurse is very helpful and I am waiting for her to make contact and I will have my questions ready

Thanks

Frank