What gives relief for BCG sensitivity?

My husband just had his 15th BCG instillation - the last of a maintenance cycle of 3 before a 6 month break. The usual symptoms he experienced after a treatment; urgency, frequency, stinging at the end of urination and a horrible feeling on pressure bearing down on the bowel and perineum, always left after a few hours but not so the last 2. After the last one, he's been suffering from cystitis-like symptoms and the bearing down discomfort for a week. A urologist at our hospital examined him yesterday and said this looks very much like the kind of inflammation/sensitivity that can occur after any amount of BCG treatments and that due to this only 1/3 of men complete the whole 3 year course of 27, and it may now be that having shown sensitivity at this point, his immune system will react badly to another session. However, he also said that after a cycle of 9 (an initial 6 followed by one cycle of 3) there's evidence to show 80% of protection, though most urology depts would prefer it if the full 27 were done. We have not been given any advice on what to take to ease the symptoms and understand that in some men they may last for months - which is depressing news for my husband (and I). Paracetamol was suggested but this doesn't do anything so I tried him on 2 x 200 mg of Ibuprofen in the thought that if this is down to inflammation then an anti-inflammatory may help. It did and for 5 hours last night he was without the discomfort, bloating, pressure, stinging and frequency. However, I'm aware that Ibuprofen shouldn't be taken long term so am just trying to see if 1 x  200mg will work. Does anyone have any suggestions for pain/symptom relief for this? Many thanks.

  • Hello Jw-k and welcome to the Cancer Chat community.

    I'm really sorry to hear of the pain and discomfort your husband is in at the moment. This must be very difficult for you both.

    I'm glad the ibuprofen was able to provide some temporary relief for your husband but do be sure to speak with his cancer team again so you can find out what can be done or taken to make these symptoms more manageable.

    Hopefully some of our members who have been in this situation will be able to offer their thoughts and suggestions to you soon but our cancer nurses will be available from Tuesday on 0808 800 4040 between 9a.m - 5p.m if you'd like to speak with them about this as well.

    If urgent medical advice is needed, then don't hesitate to get in touch with the NHS on 111.

    Best wishes to you both,

    Steph, Cancer Chat Moderator