Hello Impatient123,

Welcome to our forum! I hope you will hear from others who have experience of BCG.

In the meantime,  I have asked our nurses to respond to your post and answer your questions which they will do in the next few days. You can also ring them at any time on this free number if you live in the UK 0808 800 4040, Monday to Friday from 9am to 5pm

Best wishes,

Lucie, Cancer Chat Moderator

Hi there Impatient, welcome to the forum, but sorry to hear that your Dad has bladder cancer. I am not a medical person, but I do have bladder cancer now for 3 and a half years and I still have my bladder. I am also much older than your Dad. Having said all of that, no two people are the same, but I would certainly advise your Dad to get a second opinion before having his bladder removed. I have high grade as well and I have had several BCG treatments too. Although they are not pleasant for sure, they are a lot less difficult than other treatments for cancer, and I have had chemo and radiation for other cancers unrelated to bladder cancer. Bladder removal is a big surgery but if its' necessary to save his life then of course, he must have the surgery. I would strongly advise your Dad to get that second opinion and if both doctors agree that it should be removed then at least you and he, have made sure that it is absolutely necessary.

Our good moderator, Lucie, has advised you to speak with the nurses here on the forum and it would be a good idea for you to do that. Good luck to you and your Dad with making the best decision about his bladder cancer. On another note; I also was a long time smoker and I quit cold turkey, not because I had been diagnosed with cancer though. I had quit many years before that. Your Dad would be wise to give up smoking for a lot of good reasons. He is only 50 years old and could have many more years ahead of him once he gets this bladder cancer thing looked after. Smoking won't help him to live longer for sure.

Take care and I wish your Dad lots of luck whichever choice he makes.

Lorraine 

Hello,

Thank you for posting a question. I am sorry to learn that your dad has bladder cancer.

Your dad does have a difficult decision to make. In situations like this some people benefit from seeking a second opinion from another doctor. It is really only a specialist who has all of your dad’s medical details who can advise about what is appropriate for him.

People do not have the automatic right to a second opinion on the NHS, but a request is not often refused. To get a second opinion your dad would need a referral from his own specialist or GP.

I am sorry to say this but your dad having a high grade T1 bladder tumour with concurrent CIS (carcinoma in situ, also called Tis) does mean that he is in a high risk group for getting problems in the future.  But of course this does not mean that he will. The European Society of Urologists (specialists who treat bladder cancer)  say in their guidelines that people in the high risk group should be offered 1- 3 years of treatment with BCG or bladder removal with or without reconstruction. If BCG fails then the bladder should be removed.

There are various ways that specialists use to predict the likelihood of the cancer coming back and more importantly progressing to a muscle invasive bladder cancer. As you may know invasive bladder cancer could potentially spread to other parts of the body and this would be difficult to cure.

I don’t know where the specialist got the figure of 40% recurrence rates at 10 years from, but I would imagine it is from a reliable source. I only have figures for 5 years.  But this does not mean that people only live for 5 or 10 years. This is the length of time that people are usually followed up in a study. This is because information about survival for most treatments comes from research studies. It would be unusual for a study to last longer. This is why it is difficult to find reliable long term survival data. Also treatments change over time so long term data, unless it is mathematically adjusted, could be very misleading.

Having the bladder removed (cystectomy)  is major surgery. It becomes even more major if a new bladder is going to be reconstructed at the same time. There are different operations that can be done depending on various factors. However most people with bladder cancer are relatively elderly.  So they are more likely to have problems with recovering and healing therefore most people probably have a urostomy formed.  But at 50 your dad is still quite young

But regardless of what operation he has if the bladder is removed your dad is likely to have to make some adjustments. Things will not be completely as they were before but he could still hope to have a relatively ‘normal’ life.

If your dad does decide to take the option of surgery then he may find that the surgical team will be reluctant to proceeded if he has not been able to give up the smoking. Smoking before surgery increases the risk of pneumonia and it can also delay healing.

Continuing to smoke after a bladder cancer diagnosis does increase the risk of the cancer coming back. It also puts your dad at risk of other smoking related problems.

Your dad’s team at the hospital may be able to put him in touch with smoking cessation services.  There is general information about this on the NHS website here.

I hope that this helps a little and that things go well for your dad. We are evaluating the nurse service at the moment so it would be really helpful if you could complete the short survey that you can see here

If you have any other questions do contact us again. If you would like to telephone our Freephone number is 0808 800 4040. We are here from Monday to Friday between the hours of 9am to 5pm.

All the best,

Jean

Thanks to everyone that replied to this post.

A quick update: we started a 6 week BCG treatment for my dad, his reaction by the end of the treatment should give us a better idea if we want to do the cystectomy. 

I've also read about some alternative ways to treat cancer such as a zero carbohydrate diet, herbal medicine, drink carbonated water, etc. Would you recommend us trying these methods out in case the BCG isn't effective? Would they help the during BCG treatment? Is there any reliable website where I can learn more about these unofficial treatment methods?

Hello and thanks for update,

We don’t recommend treatments that do not have a solid evidence behind them. By this I mean published and well-designed research studies involving a decent number of people. Without research, we don’t know if something works or if it has side effects and we don’t know if it will interfere with another treatment. So we wouldn’t recommend the methods you asked about. 

If you want to read more we have some information on our website about finding information on the internet at this link  and about alterative and complimentary treatment here .

The NHS also has information about complementary and alternative treatment and about herbal medicines.

If your dad does decide to tale an alternative treatment as well as the BCG be sure that he lets his specialist know.

 We are evaluating the nurse service at the moment so it would be really helpful if you could complete the short survey .

I hope your dad’s BCG treatment goes well.

Take care,

Julia 

Hi, my husband has bladder cancer and has chosen to have the bladder removal and reconstruction rather than a stoma. He's going through chemo at the moment in the hope it will shrink before the operation. He's 57 years old. He was also a smoker.... and very stuck in his ways until our consultant stressed how important it is to give up. He was told that smoking does have a direct link with bladder cancer and although he's having a reconstruction, if he carries on smoking it could return somewhere else. He has now given up. I hope everything turns out OK for you..