BCG treatment

Immunotherapy..even! 

Hi Julia194,

welcome to the community. I am sorry to hear about your diagnosis, but glad your treatment is underway. There are quite a few people on here who have had BCG immunotherapy treatment or are currently on it. I am one. So far things are working pretty well with me. It’s a potentially life saving treatment so yes, absolutely worth it. There are other approaches to treatment such as radical cystectomy or chemo radiation, which others on the forum have experience of. You might possibly add a couple of details on your diagnosis such as staging if you have it, which might help folk respond to your question. All the best Leo

Hi Leo!

Thanks for that - and good luck and positive thoughts - for your continued treatment!

I was given a PT1g3 high grade diagnoses after the first TURBT. There was talk consistently about bladder removal early days - just in case it might have gone into the walls, whilst not further than the bladder itself (after a CT scan).

But after the second TURBT they realised it was not into the wall-  and now there is nothing there after second TURBT and therefore do not advise bladder removal  (and obviously I did not want to go that way if possible!) - so yes I think I am thinking BCG just the best way to go to help the process of it not coming back!

How have the side effects been for you? Xx

Hi Julia194,

I too am G3PT1. I had two TURBTs, no evidence that they can see of being muscle invasive. CT scan , ultrasound etc. Was advised to go down BCG route. Finished induction course of six does, now finished maintenance round of 3 doses. They saw a red patch on 1st cystoscopy , had biopsies under GA including muscle, all clear. Side effects: everyone is different, some people sail though with minimal side effects, others have more side effects. My main side effects have been fatigue for a few days after, frequency and urgency of urination and a bit of pain in the bladder for a day or two after each installation. In hindsight not too bad. One has to remember this is a serious treatment for a very serious but treatable illness, so some side effects are to be expected. You may find this leaflet useful, remember it lists all the side effects, however you may experience none of these or only a few : https://www.baus.org.uk/_userfiles/pages/files/Patients/Leaflets/BCG.pdf 

I am sure others on the forum can also relay their personal experiences of BCG, and of course other methods of treatment too, such as radical cystectomy or radiation with chemo - chemo radiation.

Leo

Hi Julia 194, I was diagnosed with a 5cm T1G3 tumour with small CIS in November 23, so far I have had 7 bcg treatments due 8th tomorrow.I have to say I have found it very easy so far only some urgency for around 12 hrs after treatment, I have had the same nurse each time and have never felt any discomfort when the BCG was being put into my bladder. If there is anything you wish to know there are lots of people in the group who will answer and give you reasurance and they are all very friendly. Best wishes as you embark on this journey you are not alone. Love Lynn .

Hi Leo, 

Thanks for sharing all that detail and the link - much appreciated! 

Yep I am definitely going to do this. Just think it's the definite best route for me.l now.

Thanks again, xx

Hi Lynn,

Thanks for that and so pleased you are getting through it really well! Thanks for your encouraging words!! 

I am definitely just gona go for it and just put all my energy into rolling with it - and seeing the best in the process fill stop. 

Take care, xxx

Hi Julia194,

Welcome to this group, but sorry to hear about your diagnosis.

My experience of BCG isn't too bad thankfully, some people have some side affects and some people sail through.

The actual process is painless, albeit a little bit of discomfort. The catheter is only in for a few minutes.

The worst part for me is the urgency and the constant weeing for about 24 Hours after.

Gosh any tips.... I was advised to avoid drinking a few hours before the BCG. They recommend keeping the BCG in for two hours, so less drink inside you makes it easier 

I don't always do the two hours though, but my consultant doesn't seem to bothered.

If you work you will need the day off, possibly the next day depending on how you feel.

Is it worth it,.... For me definitely so far, it's not easy but I think it's worth it..

Keep us posted with how you get on.

Trevor 

Hi Trevor,

Thanks so much for that great information. Much appreciated - and the tips! I hope all is going well for you on your journey with this. 

And yes I will def come back after to share. 

Thanks xx

Hi Julia, welcome to the forum of lovely people. I had T1G3 with CIS last year and have had 10 BCG so far. If you click on my profile I have recorded it for reference because i have a poor memory at times. Tbh who wants to remember medical experiences anyway ! This support group have been wonderful and steadied me through, holding my virtual hand along the way. I hope you keep in touch with the forum, you are among friends in this club.