caret icon Back to all discussions

What was your BCG treatment experience?

From our inbox: Can anyone tell me about their BCG treatment? I'll be having BCG in a few weeks and I am scared.

  1. I've only completed one round of BCG so far. My last one was February 26th. My experience wasn't terrible at all. The very first treatment was scary because I didn't know what to expect. And I actually psyched myself out because it wasn't bad at all. I am lucky to have a great team of woman that worked with me and they were gentle,sweet,and explained every move and why. I felt pretty normal for the most part. As the treatments went on I did start to experience some discomfort and it got harder to hold the BCG for the 2 hours. I also started to feel tired and sore in my bladder as the weekly treatments went by. My last 2 treatments I noticed that the catheter was starting to be uncomfortable for me. I'm guessing that's probably from being cathed every week for 6 weeks. I didn't have any bladder spasms until my last one, and they were pretty mild. My first BCG experience wasn't bad at all. I do feel lucky because so many others seem to have a lot more spasms and side effects than I experienced.

    1. Brandy78, Thanks so much for sharing about your BCG experience. I’m glad that it was not as scary as you thought and that you felt that your symptoms were pretty mild. I am also so happy that you have a great team of women who were able to care for you We appreciate you taking the time to share about this with the community!
      -Sarah ( Team Member)

  2. I've been receiving BCG now on and off for a year. After my diagnosis I was given the choice for a number of treatments, including the removal of the bladder, but opted for BCG because my cancer was non-invasive. I was scared initially as I didn't know what to expect and knew no one that had gone through this treatment. After the first 2 doses of BCG it became so much easier to deal with mentally. The procedures were quick and pain free and the recovery period was also very quick. I would have a bit of soreness for about 48 hours whilst passing urine, but nothing major and was up and about within 24 of having the treatments. I found the more water you drank after your treatment the quicker your bladder would get back to normal. The BCG itself can make you feel a bit tired, so resting up for the day is recommended. A few days leading up to my fifth BCG dose I was working out at the gym and couldn't get my body temperature up and felt quite cold even though I was working out. I then started to get a numb feeling in the tips of my fingers so decided to go home. Once in doors I explained my symptoms to my who suggested I go rest up in bed. Within an hour my symptoms turned to aching limbs all over and uncontrollably shaking, I was feeling hot and cold, with a severe headache. My wife was very worried and I had no appetite so she called the urology team who said it could be a reaction to the BCG and to take painkillers. Overnight my symptoms got worse and I started to have severe pains within the kidney area that were coming in stages and lasting a few seconds, similar to contractions. This was extremely painful and the following morning I couldn't take the pain no longer so went to the emergency department at the hospital. I was admitted onto a ward and given oral morphine to ease the pain. I was also given a CT scan, but nothing abnormal was detected. After 48 hours and plenty of morphine I was discharged from the hospital, with the pain decreasing and sent home with antibiotics. I was told by my urologist who visited me on the ward that my symptoms came about because of the BCG. The urologist explained that the BCG takes white blood cells and directs them the the bladder to fight off the cancerous cells. By doing this it can leave the rest of your body vulnerable to attack, hence the reason for my for pain in all joints. My reaction to the BCG is not common place, but can happen. I went on to finish my treatment and since have had a number of BCG doses with no problems. The BCG treatment I'm receiving is working and I'm really happy that I chose this particularly treatment in spite of my reaction to it.

    1. Noel, I'm so sorry to hear of your unexpected and painful reaction to the BCG treatment. I am glad that despite that, the treatment is working and you are happy you chose this treatment option. Thank you for sharing this experience with the community. It is helpful for those who may be considering BCG as a treatment option.
      -Sarah ( Team Member)

  3. What if you can't hold the BCG in your bladder for 2hrs? I have incontinence and Painful Bladder Syndrome.

    1. Hi ducky1, its not always possible to hold the BGC in your bladder for the recommended 2 hours and it will be more difficult with incontinence. The good thing is that the BCG goes to work straight away and will continue to do its job even if you pass urine within the 2 hours. I've always emptied my bladder completely before receiving BCG. I don't drink any liquids after waking up and I've found that I can hold the BCG in my bladder for longer. This is a lot easier to do of course if your appointment is a morning slot, which is what I always ask for. I hope this is of some help to you and wish you well when you do eventually start your treatment- Noel, ( Team Member)

    2. Thanks for the help.

  4. In the week of my treatment, I was planning to have a small commitment ceremony with my party with a large celebration afterward. Will I feel well enough to do this? Or should I reschedule?

    1. Hi cate913! I’m assuming you are currently receiving BCG with it being your fifth week. To be honest this is a question only you can answer. If you’ve been coping well with your installation then having a celebration/party should be ok. It can also depend on how long after your final installation that you have this get together. it’s important to be cautious at this stage of your treatment and mindful of any alcohol intake. If you are worried then it’s something I would discuss with my medical team, who can also advice you on this matter. I hope you able to go ahead with your celebration and good luck with the remainder of your treatment - Noel, ( Team Member)

    2. Thank you so much, but my partner and I decided to postpone it to a later date. I haven’t started getting the treatments yet, so I don’t know how I will fare. We were committed to a hall and a caterer, and really couldn’t wait to the last minute to postpone.

or create an account to reply.