BCG or bladder removal

 Jessie15 Jessie, they cannot treat you without your informed consent. If you are concerned, you should ask for a meeting with your consultant preferably with your specialist nurse.If he / she refuses, you should ask for a meeting with another consultant.

A RC is major surgery with significant risks, and could be over treatment. BCG could be under-treatment with the risk of progression.

It’s your choice - subject to the restraints of your health and risk profile.

Leo

Hi Jessie,

It's good to hear that you've started your BCG and that it went well.

I was told I needed a second TURBT as there was a lot of stuff floating around from the tumour removal that they couldn't tell what samples were taken from the bladder wall.

I think your CNS nurse will be used to lots of questions, so I would carry on asking away.

You've done a lot more research early day's than I did. I just went along with the process. 

My consultant did mention bladder removal, but it didn't even cross my mind to go this route. Despite the BCG issues it's working for me so far (touch wood), so I have no regrets going down this route. Even if the cancer comes back and my bladder needs to be removed, I've kept it for a couple of years at least.

Everyone is different of course and they should have at least brought up the possibility of this being an option in the future if needed.

I hope you get some answers soon. 

Trevor 

Thank you for your kind reply, Trevor. Did you also have C.I.S.? I think this is the one they seem to worry about most. I am going to obviously complete BCG treatment and see what happens in cystocopy,6;weeks from then. maybe I research too much and causes anxiety. I suppose like many of us my greatest fear is that it will progress and spread and I don’t know how quickly this happens or whether it can happen whilst undergoing BCG. I think my nurse is getting a bit fed up with me – I’m getting fed up with  myself to be honest.

Do not worry about calling your bladder nurse, they are there to support you. I rang mine so often in the first year she suggested providing me with my own private line . Call call and call again until you find the answers you need. Try not to comb random websites or look at statistics as everyone is different. I did that and almost had a nervous brake down.

i too am of the mind set of “see how long I can keep my bladder”

you got this lady I believe in you!!! ️️️

Aww thank you ️. I find it very hard to get hold of the nurse by phone, no doubt they are very busy so I tend to email. Just feel a bit guilty for keep asking questions but need to get the full picture. Interesting that you were offered bladder removal et cetera. Consultant I saw glossed over it and did not really ask me what I wanted to do. Just said bladder removal was major surgery and then said would begin BCG. do not feel it was put as an option. 

Hi Jessie,

I had G3 tpa TCC grading, but no CIS was found after the 2nd TURBT. My consultant mentioned something about "carpeting" and even drew me a little picture of what he saw when he 1st went in. Still no Idea what difference that made... I had my head in the sand at the beginning.... Even now after two years I consider myself fairly unknowledgeable on all the technical terms etc (getting better though lol).

I've often wondered how quick does cancer grow back. I have a check every three month's or so. So in my mind it will be picked up asap.

The anxiety at the beginning is terrible, but for me it has got a lot easier. It's weird I'm more worried about being late for my appointment's than the actual treatment's.

I know it's hard to believe that it will get easier, but I think it does for most.

You've every right to get answers, but it's good your treatment has started and BCG is the "gold standard" (stole that from someone) of high grade nmibc.

Wishing you all the best.

Trevor 

The nurses in Leeds never answered the phone it was always the answer machine and they called back when they could. 

Never feel bad and get all your thoughts on the emails and keep asking until you get your answer. 

Hi Jessie

BCG immunotherapy would be the normal recommended treatment for high grade non-muscle invasive bladder cancer. Radical cystectomy, on the other hand is generally the recommended treatment for high grade muscle invasive bladder cancer.

Radical cystectomy is major surgery involving removal of the bladder, prostrate in men, and surrounding lymph nodes. This surgery shouldn’t be undertaken lightly (and might not even be a possibility if your health isn’t good - I was discouraged from having an RC due to a previously unknown heart condition). This operation leaves you with, as a minimum, a urinary diversion (& a urostomy bag), sexual dysfunction & change in body image. I believe that most patients with your symptoms would opt for BCG immunotherapy, and indeed that would tend to be the recommended medical opinion.

From your post above I believe the only additional risk factor you have is Carcinoma In Situ (this is a flat cancer that tends to spread along the inner bladder wall, different from the squamous cancer that was removed in your first TURBT). My histology revealed high grade cancer, along with CIS, and a large 3.5cm tumour, deep into the bladder connective tissue. Given these risk factors I opted for Radical Cystectomy; my consultant said it was 50/50 as to whether he would recommend RC or BCG immunotherapy. I did have a private second opinion who explained most people of my young age (I was only 52 @ diagnosis) would opt for BCG immunotherapy (probably due to the sexual dysfunction following a Radical Cystectomy), if only for the initial 6 weeks to see if the BCG treatment appears to be working; most patients tend to have the cystectomy operation after either BCG not working or difficulties with the side effects to BCG.

I had the big Radical Cystectomy operation carried out 2 months ago, (delayed due to getting my heart condition controlled with medication) and I’m still delighted with my decision. I’m recovering well and have no regrets.

However, the decision as to whether to opt for Radical Cystectomy or BCG immunotherapy is not one to take lightly & is one only you, in discussion with your loved ones, can make.

Best wishes 

Gareth

Thank you very much Gareth for your very helpful reply. It is a difficult decision and I feel I am going to complete the BCG x 6 and see what the next cystoscopy results are. If the BCG is not working/there is recurrence I will seriously consider the radical approach. I know it is not one to be undertaken lightly but neither is the fear of progression.