BCG

[Anniemouse]

Hi i have just returned from seeing my consultant and i am to start a course of BCG.

Just wondering if anyone has been on it or is on it ..... side effects to be aware of and if it helped not .

so many questions and although i have asked them it is good to get individual feedback

Thanks

[Allyp69]

My husband only had one BCG but side effects were too much for him do not had any more. Everyone is different and others can cope with it.Fortunately he has had no more tumours in 4 years.He is 75 and doesn't want any unnecessary treatment.Hope all goes well for you.

[Anniemouse in reply to Allyp69]

Hi thank you for your reply, sorry to hear your husband was unable to tolerate the BCG, but as you say we are all different . Glad all is ok and no more tumours . Good luck for the future x

[westseajoe]

My surgeon/Dr told me it was considered the gold standard for treatment of BC. I had my first 2 operations and it was eventually followed up by 6 weeks of BCG ( 1 per week )....this was some 6 yrs ago....every bladder inspection afterwards showed no signs of cancer. after the initial 6 there was a short period before the bladder inspection followed by 3 more BCG then a period of time before the next bladder inspection and another 3 BCG and so on. On Sept 15th I will have another bladder inspection. Side effects? not really- altho I felt a bit fluish briefly after the first one but no side effects since. Hard part is to hold the BCG in for 2 hours....then the initial elimination can feel a bit odd and a bit uncomfortable....there is an urge to pee afterwards tho little if any is produced. Basically I was stuck in the house near the toilet for the day, as bleach needs to be in the toilet and the BCG is killed off by the bleach in the 20 mins before flushing. It appears that different parts of the country has different procedures- my cousin on the east coast only had 3 BCG- I had many more on the west coast. The cath which delivers the BCG into the bladder can feel odd but it all takes less than 3 minutes.

[Anniemouse in reply to westseajoe]

Thank you for your reassuring reply, i appreciate everyone is different and it can affect people differently but i have decided to give it ago and i pray all will be ok . i will be having one dose weekly for six weeks then a break before a cystoscopy . Then if all is ok a maintenance dose etc just as you explained . Good luck for your next inspection .

[westseajoe in reply to Anniemouse]

btw....they give u a numbing gel before they insert the cath

[Dragonslayer in reply to westseajoe]

My Dr. did not make me keep the BCG in for very long.

[tks378401]

I have had BCG treatment in1997. It was not too bad. I was able to take off work for a couple of days so I could work 3 days and be off 4 to rest. The first 2 treatments didn't really affect me but after that my body ached like I had the flu. I have had no reoccurring cancer since. I hope you have as good a result as I did.

[Anniemouse in reply to tks378401]

That is great news, so pleased the cancer as stayed away.

I pray i get the same results

Many thanks for your reply

[meghwyn]

Hello,

After 3 1/2 years of BCG, 5 weeks or so ago I had the last treatemt of the planned course. A week on Tuesday I am booked in for my final cystoscopy before annual examinations become the norm,

......hopefully.

Although it has not become easier, I am lucky that I have been able to tolerate the treatment.

I am so grateful to the Urollogy team at Northumbria NHS and Wansbeck in particular, who have treated and cared for me during this stressful and somewhat worrying period of my life.

Fingers crossed that this coming cysto is clear and I can look forward to a cancer free future, God willing.

Good luck to all of you.

[Anniemouse in reply to meghwyn]

Hi that is great news, and prayers that you get the final all clear. It is lovely when we get the support we need .

it is so stressful , every time i go for a cystscoscopy which as been every three months i worry . I then spend the next three months worrying .

ongoing x

i am awaiting my first course of BCG which should be any day now ...... again worry .

But life is precious we need to live for today .

All the best for the future

[PaMul]

I hope all goes well for you with the BCG treatment. I’ve managed to stay with Mitomycin C so far. Fingers crossed 🤞 for everyone. We’re all at various stages of pre or post check up. My next is in 10 days. Keep calm and carry on.

[faras]

I'm 71, had BC twice, first one a cauliflower like stemmed cancer, removed then wash after, 2nd one a flat cancer, removed , and wash after, they are giving after 5 years BCG 3 times week 1,2,3, then a three to 6 months break, then camera. so far so good. week one is not bad, but week 2 and 3, quite a lot of side effect, blood in wee, hard to pee it all out; and very disturbed sleep; feel so tired. On the bright side after the third one over, am right as rain within 3/4 days. Once had multiple-biopsies taken, in the bladder and one in urethra, could not wee at all, needed catheter, this made very difficult BCG, as some got trapped in urethra longer than was good, extreme pain, nearly passed out having wee , was stuck like that 6 weeks, it was no joke

[madnanny]

My Husband was diagnosed with bladder cancer about 3yrs ago he was put on BCG for 6 months he then had a cystoscope which confirmed that there was only a small change in his condition we had a discussion to give him a break for 2 months and then start BCG treatment again this was followed by a biopsy this time this showed a significant improvement in the cancer cells, after discussing this again my Husband said that he would carry on with the treatment again and after a 2 month break he had a further 6 months treatment followed by a cystoscope which once again showed a further reduction in the cancer cells, he then had a break of 2 months again followed by a 3 months treatment this time , then another biopsy which showed that he was FREE of cancer cells. This BCG treatment is quite gruelling but not really painful and it saved his life, he is called back for checks at 6 months intervals and so far so good, I hope that this will help you in some small way.

[Anniemouse in reply to madnanny]

That is great news and very reassuring , thank you so much for sharing that .

i pray all goes ok for me and i get the same results

Blessings to you both for continued good health.