Decision making

Hi Teasswill,This is interesting.I do think 6-12 weeks to recover from cystectomy is misleading though.Love Jane 

I agree, that needs qualifying. From the medical point of view, they probably consider wound healing and similar factors rather than a patient"s perspective of when will I be fully back to normal.

That was the way I understood it too.I felt much better after 12 weeks but far from recovered.

Thanks for the link. Very interesting and useful.

One topic that hasn't come up during my consultations or any discussions is survival rates. 

I'm going down the BCG route, 75% survival rate over 5 years. I guessed these are good as odds as can be expected. Would this make my diagnosis potentially terminal? Or is there a specific definition of a terminal diagnosis 

I'm just thinking out loud.. I have another consultation soon so will ask some questions then.

Thanks again for the link.

A terminal condition is when there is no prospect of cure and the condition will inevitably lead to death. Bearing in mind that some BC patients are already quite old, those statistics probably include people who die from other causes before the 5 years is up. However there will certainly be some who have BCG, but get a recurrence which is muscle invasive or worse and metastasises. At this point it would be considered terminal.

From TaG3 diagnosis and RC with clear post op path report, the best I was given was 95% likely cured - at 12 years post op, I can be pretty sure it will be something else that will finish me off eventually. 

PS The 75% also includes people who had BCG and surgery or chemo/radiotherapy. 

Thanks Teasswill, very encouraging to read your experiences.

I think I'll bring the subject up during my next consultation. 

It's a difficult decision for all I guessed, but your link explained it very well.

I think I flipped a little when I saw the survival commentary.

Hi BFG, just to say I was Pta G3 11 years ago, 15 BCGs and been clear since, I have my last check up in Nov and fingers crossed alls well. They wanted to discharge me last year but asked for another year and I may well do the same in Nov. I only had 15 BCGs as at the time there was a world shortage or else I would have had the 27. Good luck x

Hi sueCC,

Many thanks for the message and for posting your experiences. It's greatly appreciated.

Take care.

Hi Sue CC, you are my big hope I think of you all the time and hope and pray I am as lucky as you with 11 years cancer free. I am only 1 year into treatment with Bcg but seem OK at present I was G3 Pt1 but I also had CIS. You can't imagine how happy I felt in March and June with clear camera. I have everything crossed for the future. Keep healthy. X