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.
Thank you and just checking in…
January scope…wonderful- “NED”- No Evidence of Disease – my new favorite acronym😉.
Then 3 maintenance BCG treatments with terrible side effects on #3, but April scope all clear (“NED”).
Now doing monthly CHEMO treatments – changed due to national shortage, so chemo treatments first week of each month tilJanuary 2020 is my life. BUT still happy to report July scope all clear…loving that “NED” mark in my chart!
Next scope with CT Scan for my 1 year anniversary (since my diagnosis and surgery) is in October, so fingers crossed (and toes, too!)
Thank you for listening. I so appreciate bladdercancet.net !
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)
Thank you for the welcome.
I recently finished my 12th BCG infusion. I am in a study program and will receive 27 treatments over a 3 year period. Things have gone fairly smooth. I was flat on my back for 3 days after the 10th treatment. Not sure what happened.
My wife is almost paranoid that she will get TB.
Recheck in 2 days.
God’s Blessings and best wishes to all.
@deaconbrad, thanks for checking back in – strange about just the 10th treatment being so brutal. Glad things have been smooth otherwise and hope this study goes well too. How did you find out about the study? Will you be starting before the holidays? – Nina, BladderCancer.net Team
So I had biopsy after my 6 treatments in early June. I got the all clear and was elated that at least for 3 months I could rest my body and mind of anything cancer related. My body did let me know I was doing too much too soon after biopsy. Had some minor bleeding days 3 and 8 but knew scabs were probably coming off. Come day 16 after biopsy, I rushed myself to closest ER only knowing my bladder felt like it had filled to the limit and I couldn’t urinate but when I wiped the dribbles it was bright red blood. I was in full blown hemorrhage with clots blocking urethra! They flushed several clots(worst pain of my life) but ultimately ambulanced me to hospital where biopsy was done. After several more clots had to be flushed they operated to find 4 areas (2 on each side) needed cauterized. Lost so much blood had to go through weeks of IV iron and b12 shots. Its been 6 long weeks and finally starting to feel better. I feel I can get back to work as hairstylist, at least part time but after all this I have a fear of getting back to life. You would think I would be running to normalcy instead of fearing it…
Hi @pixie91, that sounds like a terrifying experience. I’m glad you got yourself to the ER when you did! I can’t imagine how painful that must have been when they flushed the clots. Definitely take it easy and give yourself time to recover. Going back to work is a big step and I can see how that would be scary. It can be so strange going back to “normal” after a serious health scare. Is it possible for you to ease your way back into things? Perhaps just paying a short visit to the salon to start. Then working a short shift or fewer days until you feel ready to get back into it? I’ll be thinking of you these next few weeks. If you’re willing to share, I’d be glad to hear updates on how you are recovering and how things are going. Take care,Sarah (BladderCancer.net Team Member)
Thank you, Sarah. Went for My weekly hematology since that even and my red blood count is finally over 3👏👏and hemoglobin finally in normal range(its the small things that make me happy ☺). Yes, I am going to start back to work slow, just a few clients a week to get back into it. Its true, after such a major health issue, work or anything social for that matter, seems respectfully trivial. Of course income is not but in my business I have to be social and listening to someone boohoo over their child’s school day or a flat tire is hard to do after personally going through hell. I don’t mean to sound trite or full of self pity. I know in time, the daily normalcy will be easier but I have changed through all of this and not the way I thought I would. I don’t think many people talk about the emotional change that happens with cancer. I used to be the one going above and beyond for anyone and everyone but I truly don’t have that in me anymore and find even as I am feeling better, it’s much easier to say no to people. Is it my new normal or am I just not giving myself enough time?
@pixie91, So glad to hear your red blood count is finally over 3, and that health-wise you are continuing to show signs of recovery! Going back to work as a hairdresser is unique in that part of your job is listening to clients talk about their life and problems. “Respectfully trivial”, is probably the best way to describe the way those problems now seem. It is not unusual to feel like you’ve gone through a big emotional change. You did survive a traumatic, serious, health event after all. I agree that not enough people talk about the emotional changes that take place. I’m not sure if this will be your new normal or if things will change over time, as this can vary so much depending on experience. You might be able to relate to this article by Shirley where she talks about how she’s changed from cancer (https://bladdercancer.net/living/how-cancer-changed-me/). If you ever feel like you want to share more about your journey, you could write about it here: https://bladdercancer.net/stories/. I think many people here can relate to your feelings on this topic. Thanks for sharing about how you are. I’d be glad to keep in touch with how things go back at work.
Take care, Sarah (BladderCancer.net Team Member)
So glad I found this forum! After my diagnosis of low grade cancer 2 years ago, the tumours were removed and I had six weeks of BCG treatment. Like most people I had never heard of it, and was quite scared, but the nurses at the hospital were so reassuring and patient, explained everything to me, and made sure of my comfort the two hours I was there each time. It was uncomfortable but not unbearable, and I took a good novel with me to read to pass the time. Had to wear incontinence pants on the way home though, and it was painful to pass urine the first day.
The urologist asked me at on the final day if I’d experienced burning and discomfort and was pleased when I said yes! He said that means the treatment was working. So if it hurts, put up with it!
Now, two years later, the cancer has returned but we got it early, and the bladder wasn’t so bad, but I still have to have the six weeks BCG again. At least I know what to expect, and am not too worried.
Hi @gina – Welcome to the forum! We’re glad to have you here. Thank you for sharing your personal experience with BCG. You shared some helpful tips for going through the treatments. We do hear of burning and discomfort often, and encourage people to discuss those symptoms with their doctor (nice to hear your urologist gave you some encouragement!). I’m glad you’re feeling good about what to expect in this upcoming round of BCG. Let us know how you are doing in the coming weeks! I hope it goes well. -Sarah (BladderCancer.net Team Member)
So glad BladderCancer.net shared this forum with me! I was diagnosed August 2018 and have had 4 TURBT surgeries since, the last one on 11/19/19. This time they found high-grade tumors and I start my 6 week course of BCG treatments tomorrow and I am a little anxious. After reading some of the replies and stories above I now know a little more about what to expect from those who have walked the walk. It’s one thing to hear from a doctor what to expect but so much more comforting and realistic to hear it from those who have been through the process. I have been told that after the treatment is administered I will be sent home to “hold it” for the 2 hours, just hope I make it home without an issue. Because of my husbands pulmonary condition I worry about the TB virus and how it may affect him. I will contain myself to one toilet and he will not use that one for several days. I’m loaded up on bleach and bleach wipes so I guess that toilet will be cleaner than it ever has been! Thank you all for sharing your journey, it is of great comfort. Prayers up to all!
Lori I am appalled to read that you will be sent back home and hold the BCG in your bladder for 2 hours! I would say that is physically impossible. The kidneys continue to make urine regardless of what is going on in the bladder, so the urine builds up pressure over the 2 hours, and unless a bit at a time is released through a catheter, the bladder will empty itself completely involuntarily. Ask me how I know…My nurses came as soon as I pressed the buzzer to let them know the urine was building up and they released just enough to make me comfortable. If they didn’t get to me in time, there was a big wet mess in my bed and it would have to be stripped and remade, and I would have to have a shower to wash all the contaminated urine from my skin.
Me again. I asked my urologist today if they ever sent people home to hold the BCG in their bladder for the two hours, and he said ‘they do things differently in America’ . I have private health insurance cover so I suppose I’m getting what I pay for, although it is hugely expensive.
My husband also has COPD and we certainly have to be vigilant, but my specialist said unless you are really careless, the BCG vaccine should not harm anyone else in the household.
Even though my bladder was drained through the catheter in the hospital at the end of the two hours, I still ‘leaked’ horribly for the rest of the day, so I bought a pack of incontinence pants and put a pair on before I left the hospital to go home in my husband’s car. Didn’t want to chance leaking on his car seat. The pants hold a lot, and don’t leak, so they are a boon, but again, they have to be disposed of carefully. Pour bleach over the soiled part and wrap them up in a plastic bag and seal it before throwing it in your household waste bin.
@gina, I’m glad you got some clarity from your urologist about administering BCG in different countries! That is so interesting. You shared some great tips for the event of a leak on the way home. Having incontinence pants on hand is always a good idea. Thank you for sharing that here! Wishing you a pleasant weekend. -Sarah (BladderCancer.net Team Member)
Thanks Gina for the tips! My 1st procedure wasn’t bad at all. A little discomfort when the catheter went in, a little awkwardness while the drug was being administered. Small talk while your legs are spread open and a nurse is holding a bottle of treatment was almost comical. Thankfully, I was able to hold my bladder for the 2 hours with no leaking issues. Other that a sip of water here and there I quit taking fluids about 9 the prior night. My appointment was a morning appointment so it all worked out. Great idea and I may grab some incontinence panties just in case. I stocked up on bleach and wipes and used them for 8 hours after my first void just to err on the side of caution and my husband didn’t use that toilet until the next day. Other than a little of burning, a lot of urinating and a low grade fever 2 days later all went well. Hoping the other treatments go as smoothly! 1 down 5 to go! Prayers up to all!
Hi Lori, Glad to hear it went so well for you, and I hope the remaining five treatments were without trauma!
I started my six week treatment course today, and my nurse explained that things have changed since my first lot two years ago. It seems that the method you described of administering the vaccine then sending you home is now the way to go here in public hospitals! The method is different and much better – no more lying in bed with the catheter in the bladder for 2 hours – she said that is what caused the discomfort, not the vaccine itself. I still stayed on the bed for two hours, but with no discomfort or leaking, and all day I have been able to urinate without resorting to Ural or pain killers. The nurse said I may experience some discomfort with later treatments, but not as bad as the first time. Yay!
Hi Gina, Glad you didn’t have to have the cath in for 2 hours and your treatments are going better. I’m 4 down, 2 to go in my treatments. The last one (4th) was a little rougher than the prior treatments and just made me really tired, but it’s nothing a little sleep didn’t fix. I find the biggest pain is not being able to use a public restroom for the next 8 hours after treatment, therefore leaving you home bound. I am really fortunate that I work from home so I don’t have to take time off work, however I’m not as productive the day of treatment or the next day. I’m 2/3 the way home! I look forward to my clear cystoscopy in February! Good luck with your treatments!! Prayers up to all!