Dad diagnosed with bladder cancer CIS grade

Hi Dray_L341418 and a warm welcome to the group although sorry to hear your dad has BC. Firstly be aware that bladder cancer can be treated successfully . CIS is a bit more difficult but still treatable. BCG treatment has been used for over 50 years and the main treatment for non invasive BC. The effects of treatment are varied and cannot be predicted. Some sail through it while others have severe effects, but most are somewhere in the middle with mild side effects. Lots of experience here to help as you and dad go forward, so always someone here to answer any questions. Best wishes.

Bless you, thanks so much for your fast response and reassurance. He is 68yrs old and his urologist describes him as a 'fit and healthy man, so I am hoping this will see him in good stead.

Im making a plan and list of helpful things to get him when treatment starts which currently includes Lemon Barley, bleach and lots of anti bac wipes ! 

Thanks again for your reassurance :) 

Hi Dray. Being fit does help to get through treatment. I was 64 when diagnosed and further down the line than your dad. That was over ten years ago along with many others here, so hopefully that will give you something positive to focus on. Stick with us. It can be a long process and you will get lots of support going forward. best wishes.

Hi Dray,

Welcome to this friendly forum.

Grade 3 non invasive (G3p Ta tcc) diagnosis here.

Diagnosed in Dec 2022, two TURBTS and 18 BCGs in. Had my last biopsy results in couple of weeks ago and no reoccurrence ( for which I'm grateful).

The BCG as rily said can vary for each individual, so I can only give my personal experience.

Your dad will start with the induction course of six instillations ( one per week). Then will probably move to maintance sessions being 3 instillations (again once a week).

I'm scheduled to have 27 Instillations, but this can change with Trust's).

To begin with I didn't find the BCG too bad, urgency for 24 hours, so up during the night a bit. But the effects did get worse the more I had.

Currently my bladder has Chronic Inflammation (from BCG 18) so I'm delaying my next batch.

Thankfully my treatment has worked, so can't really grumble.

Wishing you and your dad all the best.

Quite a few of us going through BCG on here, so any additional questions please fire away.

Trevor

Hi Dray,Welcome to our friendly group.I hope you will find it helpful and supportive.Best wishes Jane 

That certainly does fill me with hope. Thanks so much again 

Thanks Jane 

Hi Trevor,

Wow, what a journey you have had and congratulations on getting your clear biopsy and getting through the many treatments you have had. I have read that not many reach the full course for various reasons but mainly due to side effects. 

I would be interested to know whether there are any statistics which show any difference in reoccurrence rates for those that cant make it through the full course due to the side effects. Have they ever mentioned to you that you may have to have your bladder removed eventually due to the chronic inflammation caused directly from the BCG treatment ? 

I appreciate these are very personal questions Trevor, so please don't feel you need to answer them.

Thank you for your support 

Hi Dray,

Many thanks, the BCG program (aka SWOG course) is definitely a long haul treatment plan.

Before starting the BCG course my consultant mentioned bladder removal as an option, but not since.

He wants me to continue the BCG course, but not until my inflammation reduces. BCG does cause inflammation just in the way it works I believe, so would be having inflammation on inflammation, which will be a bit intolerable for sure.

My consultant also mentioned in the beginning that not many people make the full course, but didn't give any stats on the chances of reoccurrence if I didn't complete the full course.

I did Google stats in the beginning, but there seemed to be conflicting answers, but if I recall the chances of reoccurrence was 20% to 40% in the first 5 years, please don't take this as gospel as I could be remembering wrong and I've given up googling things as I've heard most of the data is out of date.

Some hospital trusts only do 18 as standard now, I've heard it's because of the damage vs the benefits and that there has been some research into this. Part of me thinks it's to do with the cost, but I don't really know.

At the moment I very much doubt that I'll be having any more this year, but I'm glad I made it too 18. 

Just to add the actual installation of the BCG not too bad, the catheter is only in for a short while and all my nurses etc have been amazing. Modesty goes out of the window of course, but I soon got used to that.

Fire away with any questions, I've been very open to anyone that asks, and will try to answer if possible. I certainly had plenty of questions in the beginning and this forum and the lovely people helped guide me through.

Take care.

Trevor 

Hi, it's natural that you are scared - sometimes loved ones are more so than the patient themselves. There are statistics about recurrence, progression and survival rates, but they won't tell you your dad's personal outcome. You also get a bit of a skewed sample of experiences here, rather than a true representation of all patients. Even if there is a recurrence, there are more treatments available, so do stay hopeful. Hope all goes well for your dad.