Starting BCG for stage 1 and want details…what happens when I’m home? How will I feel, physically? Dr. Said Id have UTI symptoms, but have others experienced more than that? I’ve read about the precautions (bleaching the toilet) but want to hear from someone whose gone through it.
Hi Lisamimm, thank you for reaching out and seeking some advice. I was diagnosed with stage 1, high grade bladder cancer and went through surgery to remove tumour. I opted for the BCG treatment and like you knew very little about what to expect. The treatment itself is relatively simple and the procedure was very quick and pain free. I highly recommend that you try to have someone around after treatment, at least for the first 24 hours. I always felt very good after treatment, but the effects can creep up on you, so it’s very important to rest for 24 hours and drink plenty of water. In regards to UTI’s I never suffered from this, but the burning sensation whilst urinating is uncomfortable and your urgency will increase along with your frequency. This can last up to four days after, so don’t be to worried if it still burns whilst urinating. Some people go through their 6 cycles with very little side effect from the BCG, however after my fourth cycle I ended up with a terrible fever and very aching limbs, which lasted for 24 hours and I didn’t get back to normal for at least 3 days after. I was told it was part the BCG doing its work and was able to complete my 6 treatments. I hope this was of some help to you and please get back to us if you need any more advice – Noel, (BladderCancer.net Team Member)
Thank you, Noel. I appreciate you sharing. I have stage 1, high grade as well. 5cm tumor removed. It’s been 7 weeks, so its time for BCG. I can do this, but am nervous about those “possible” side affects that may or may not happen. Fear if the unknown, I guess. You helped me very much.
I’ve just finished my 3rd TURBT after 2 rounds of 6 installations of BCG after the first 2 TURBT. I am still at T1 high grade with no bladder muscle invasion. I’ve been lucky with very few after effects from the BCG treatments. The most annoying is some burning along with urgency to go often. It does lessen with time and Uribel for the burning helps immensely. Everyone reacts differently to the process but if you have a good doc he will listen and help you along the path.
Doing well, thank you. Two down, 4 to go! No noticeable side affects yet. I’m being told I might feel burning and UTI symptoms at the third treatment. So I’m hoping for the best, but maybe I’ll get lucky and it will be mild. I appreciate you checking in!
I’ve finished my 6 weeks BCG treatment and am happy to have come thru fairly well. I have a scope on Jan 9 checking for recurrence. Until then, happy to be feeling well and enjoying the Christmas season. My only side effects are extreme tiredness. Hoping for the best as I continue on this journey.
My best to everyone fighting this horrible disease!
Lisa, it’s nice to hear back from you. Congrats on finishing your 6 weeks of treatment!! Good to hear that things went fairly well and that you’ll get a break during the Christmas season. Extreme tiredness can be really challenging to push through…you are definitely not alone. I’m linking you to a conversation thread about fatigue if you’re interested in sharing or discussing further (https://bladdercancer.net/q-and-a/experienced-fatigue-result-treatment/). Thanks for those encouraging words. I very much appreciate hearing from you from beginning to end of your treatments. We are always here for you so please keep in touch, I will be thinking of you. Have a wonderful Christmas holiday! -Sarah (BladderCancer.net Team Member)
I had/have a papillary urothelial carcinoma, high grade, noninvasive diagnosis.
A month after a TURBT I started BCG treatments. I have completed 4 of 6. With my experience I have been lucky to have very few side effects. I have noticed a low grade fever each time but nothing atrocious.
The only problem I have had is with the catheter insertion. I was told by the “professionals” that it would get easier with each treatment. Mind you, these are the same people that said cystosopy would use a SMALL camera. My definition of small and theirs would be polar opposite.
At any rate when the catheter passes my prostate it opens my eyes wider each time. That has been my biggest problem. Based on other posts I have read, I must be extremely lucky.
Hi dobinski, I’ve been through a few installations of BCG and apart from my first session the side effects have been almost nonexistent. Like yourself my biggest issue was receiving each dose. I’ve never suffered from anxiety but I use to get myself all worked up before receiving each dose. I’m now 18 months down the road and although getting the catheter inserted still freaks me out a little, I’ve managed to find a way that limits the pain and feeling whilst having this procedure. I tend not to focus on anything in the treatment apart from my breathing, which is long deep and laboured and if I do feel anything from the catheter once it’s being inserted I give a cough, which opens up the passage allowing easier insertion. Using this method theres been times that I haven’t even realised it’s been inserted until I’m told by the nurse it’s all done. This works for me and hopefully it can work for you if you give it a try. It also works to some degree with the camera, but not has effective. Good luck with the remainder of your BCG treatment and please keep us posted on your journey – Noel,(BladderCancer.net Team Member)
I have had a total nephrectomy due to high grade urothelial carcinoma in the kidney and a TURBT for 3 low grade tumors this past year. I too am starting BCG in a week. I understand your fears and you are not alone! I havent fared so well with pain through this whole process so I am apprehensive about the BCG. Unfortunately, we don’t have much of a choice when it comes to treatments but reading these responses is a little reassuring that maybe it won’t be so bad😉.
Just joined group today. 2 1/2 state 0 bladder cancer survivor. 4 surgeries, now doc wants to consider BCG Treatment. Effective? Side effects? Other options?
I have 6 grandchildren I would like to see grow up.
Hi @deaconbrad – Welcome, we’re glad to have you in this group. Congrats on your survivorship! BCG is a commonly talked about treatment in this group so you’ve come to the right place with your questions. Effectiveness of BCG can vary from person to person, and side effects can include irritation, fatigue and cramps. Others may be able to share more personal experiences. In the meantime, here is a link to a bunch of articles about BCG: https://bladdercancer.net/?s=bcg. As for other options, we suggest you talk to your doctor about those, but you can learn more here: https://bladdercancer.net/treatment/. Your 6 grandchildren sound wonderful, you are so blessed and lucky to have them! -Sarah (BladderCancer.net Team Member)