BCG Treatment

Hi and welcome. Although I have not had BCG myself, your story is quite familiar on here. Many people here over the past weeks have had the treatment stopped or postponed because of the virus. The risk of Covid seems to outweigh the risk of finishing BCG treatment. Good luck with your flexi. Best wishes.

Thank you rily for the warm welcome & reply. It isn’t a temporary measure re Covid though. Apparently the trust (according to my oncology nurse) thinks that after 12 months equalling  a few courses of BCG there is nothing to be gained by having more! Just disappointed that I haven’t had it in writing with a full explanation. Instead of a couple of sentences in reply to an email that I sent my oncology nurse. I will still get my checks for which I am very grateful for. Take care.

Hi Nene123, hope this puts your mind at rest a bit......8 years ago in November I got diagnosed with BC, went down the BCG road and had 15, then there was a world shortage so it was stopped and I haven’t had anymore since and been clear.  I was told at the time a years worth is enough and much kinder on your bladder, I don’t have any problems that way. I think there’s a few people on here who didn’t have the full 27 for one reason or another and doing well. I should have had a flexi in April but still waiting.....Good luck x

Hi Nene123, I was also diagnosed in 2017 and have had 18 BCG doses so far. In June (rescheduled from March) I had a clear cystoscopy. This was my second all-clear in 8 months. After this my CNS phoned to discuss whether I should have more doses. I understood it was because of virus risks the MDT felt I needed to make this decision. I had originally been told the protocol was 27 doses. Because I have had two reoccurrences (2018 and 2019) and my reactions to BCG have been generally mild, I decided I would continue with the next 3 doses. I think if I can stay clear for a year I might then stop. If you are worried I think you should ask to discuss it further with your consultant. I think you are owed a proper explanation for changing the treatment. Best wishes x

Hi sueCC,

Thanks for replying & bolstering me up again. Your words have helped to ease my concerns greatly. I felt apprehensive nearing the end of my treatment in 2021 but also felt safe too if that sounds ok? Now i've been catapulted into that scary place a lot sooner than i expected! Also, hearing it in a few words via an email reply sent from me to my oncology nurse was not how i thought it would be!

Well done on your journey so far & good luck for the future

Best wishes

Denise

Hi Herothedog,

Thanks for your kind reply & giving me reassurance. I am feeling so much more positive now after reading so many different life stories on here. Sometimes just a few words can be so powerful & alleviate so many worries. I felt as though my safety blanket had been taken away .... if that makes sense? Just knowing i was to be having treatment until late 2021 gave me a little more time & now feel as if i have been catapulted into my future! My oncology nurse said that i would have been starting my 30month dose & apparently it's the first 12 months that are the most important which kind of left me thinking .... why continue after 12 then! I have sailed through the treatments so feel truly grateful for where i am now in comparison to December 16 when it all began. I did not want to trouble them in these tumultuous times but feel that a letter would be nice explaining the reasoning behind their decision.

Well done for how far you have come & good luck for your future

Best wishes

Denise x

I have just started my BCG with a schedule for 3 years. I was due to have 6 but because of a Bank Holiday it is only 5. Does this matter?

What the CNS said was the after-effects are cumulative. I think she meant just urgency and frequency. Is that right in others' experience? Are these effects permanent? 

Sorry for the many questions. I know my position is not as iffy as others'. Any comments would be appreciated. I hope those who have been waiting are in a better position.

Peter.

Hi Gandalf, my understanding is that initial BCG is a series of 6 weekly doses. I think you are right to question this. I believe  6 doses is the protocol.  I've now had 21 doses. I haven't experienced many long-lasting negative effects except frequency. I have experienced flu-y symptoms and tiredness after a couple of the doses, lasting a few days.

I wonder if what the CNS was saying was that the beneficial treatment effects of the BCG are cumulative? Maybe you could give CNS a ring to clarify? My CNS is fantastic, and happy for me to contact and ask about anything. Best wishes. x

Thanks, Herothedg. Your experience is encouraging. I will clarify with the CNS about what is cumulative.

All the best.

Peter.

In my husband's experience the urgency and frequency were cumulative. In his case he had a recurrence at the check just after 6/6. and was switched to chemo [which has worked so far].

I recommend packing a bag with a pee bottle, spare underwear, maybe tena pants/similar, tissues etc for the journey home from treatments. [Just bear in mind bottles usually sold are NOT watertight for travel so need to be kept upright if you cannot empty them straight away. Or find your own wide neck secure screw-top bottle].

The urgency and frequency tended to improve with time after each course ended. Though he's also affected by strictures which tend to have an adverse impact.

Hope this helps

Denby