BCG & Bladder Cancer

Hi janeysw and welcome to the group. We understand what a worrying time this is for you as treatments are being postponed across the board. The good thing is that your tumours were early stage and although G3 they have been removed. The BCG treatment you have had so far will have gone some way in to preventing or slowing further recurrences. It is believed you would be more at risk if you continued with treatment. In general,the BCG only stays in the bladder for a day or so and rarely finds its way in to the blood stream. We know how difficult it is to contact the medics and so if you want to talk, there is always someone here. Best wishes.

Hi rily, thanks for the reply made me feel better just being able to express my frustrations.  Do you know why we are having to shield at home for three months at least? Is it the medication we have been on, BCG in my case or is it the cancer itself?  Just so confusing at moment.  Are all cancer patients having to do this?  Told you I had lots of questions!!  Many thanks 

Hi janeysw. There has been a lot of debate about these letters, not just in this group, but across the board. I think many people who have had recent treatment are getting them as standard as a precaution. I believe that if anyone does catch CV19 as well as going through cancer, then they may have a more difficult time dealing with it. It does seem to be a bit of a grey area. and really is confusing, but always best to err on the side of caution. Best wishes.

Hi janeysw, totally sympathise with your feelings. I have missed my regular cystoscopy and BCG maintenance treatment. I previously had two reoccurrences. I certainly don't have any medical expertise but I think the reason we are on the NHS vulnerable list is because BCG is already triggering our immune system into action by introducing bacteria, therefore we have less immune strength left to fight other infections. I do know that as I have had more and more BCG doses I've felt my  defences against colds, virus, gum disease etc were lowered and in each three /six month period afterwards I have needed to rebuild my stamina. I think you'd be ok to go out for a country lane walk if you stay 4 metres from anyone. I have been walking around my local woodland with my dogs, I think I would quickly lose mobility if I didn't walk outside at all. You are not alone, we are all in a similar boat. xx

Hi Janeysw, my husband had  exactly the same gradings as you and like you a recurrence after BCG. His consultant presented us with   " an equal choice" between more BCG, switching to Mitomycin, or [big shock] bladder out. We opted for the Mitomycin and though not without hitches, it has done the trick. Hopefully you will be able to ask in due course if this would be appropriate for you to try. So while you have no choice of anything, the best you can do is keep as well as possible. If you are nervous of the narrowness of your lane bringing people too close, why not make and carry a placard to hold up asking people to "please keep 4 metres away" as suggested, "for medical reasons". Sunshine is definitely recommended as an immune booster.

All the best, 

Denby

Hi herothedog, thank you so much for your message I know we are all in the same boat, but its all so horrible what,s on the news, but I feel I have done a positive thing in joining this forum, feel so much better and far less alone. Thanks again

Hi Denby Thanks for the message, actually I was offered to have bladder out too!!!! But both my consultant and me ( surprise, surprise!!) decided continuation with BCG was best!! I agree sunshine is best immune boost especially at this time. Think I had that Mitomycin directly after the Turbt op, already in bladder when I woke up and kept in for an hour afterwards. But I will bear it in mind for when this horrible time is all over.  Thanks again Denby

janeysw hi, I was receiving BCG 7 years ago I had 15 then there was a shortage of it so it was stopped, a lot of people at the time had less then me but we was told it’s the first 6 that’s the most important, you’ve had 9 so I would think you’d be fine for another 3 months but yes I do know how worrisome it is. Keep on at them don’t let it slip. I had my cystoscope cancelled this month, by the time I get it it’ll be over a year, again frightening. I also received a letter, don’t know why as I said it’s a long time since I had BCG, asked the doctor and he wants to see letter as he can’t think why I received it. By the way I was the same as you pta grade 3 and been clear since, well fingers crossed for next check up!! X