Question to those who took 6 BCG treatments: New tumors

Hi @ella76
It is wonderful news when you hear you are cancer-free and so encouraging. I hope all the members here experience this sooner than later.

Sorry to hear the BCG caused your reactive arthritis but apparently it was successful since you are presently cancer-free and may you always remain so. I am interested to know how many treatments you actually had before stopping the BCG.

Sending my best wishes.

I had 6 treatments and the last one was the week of Christmas 2025 and that was when I had all my problems.
My Dr will not give me anymore BCG because of the bad reactions I had. I had a biopsy June 5 2026 for red spots and bladder wall bleeding and thankfully the biopsy was benign. But as I said if I need more treatment I would not do BCG as it really gave me all kinds of issues. I know a lot of urologists will not give BCG again if you developed Reactive Arthritis. I wish you good vibes and will pray for whatever treatment you get will work. Let me know how you make out with the new opinion you are seeking. Prayers for you.
Ella76

@kevinpm
Good news to hear of your BCG success. I credit your determination to continue and it sure paid off.

If I should continue with the next round of BCG treatments, I hope I will also be pleased with the follow-up scope. It's all uncertain now as next week I am due to have yet another scope following my last one - but this time for a surgeon to determine whether the tumors will be removed in the office or I'll have to venture into the OR if they are too large.

Constant vigilance is required for bladder cancer and it becomes exhausting - treatment, then scope, additional treatment, further scope - etc. I am entering my second year and feel like this will continue ad infinitum. I have tremendous admiration for those who have the inner strength to continue year after year of medical surveillance.

My best wishes to you.

@ella76
Thank you for your prayers and here's hoping you remain clear from here on in. It's wonderful to receive good news.

I keep wishing that after my tumors are removed, no further ones will form in my bladder and how I would celebrate. Hmmm...a lovely rich chocolate blackout cake topped with gobs of whipped cream. So nice to imagine! I can dream can't I ?!

Sending positive thoughts and best wishes to you.

I’m so sorry for your trouble. I hope that things improve. I just got done with my sixth BCG infusion. And in four weeks I have cystoscopy to find out where I am. I’ve been suffering so bad after the sixth infusion.so much pain in the penis and now I’m getting pulsations again and burning. It hurts so bad. I’m so confused but hoping for the best. I wish you the best as mentioned before may God bless us all with the healing and enduring.

Hi @divey
I am also sorry to hear of your extreme discomfort and pain after having the BCG treatments. I wish we and members of the group did not have to suffer from these but it seems this is the first treatment modality recommended and while some manage well, others unfortunately do not.

We need to take heart and emotionally (as well as physically) strengthen ourselves (I am trying to convince myself of this) that the road to success is not a smooth path for the most part as this is a challenging cancer, to be sure.

I hope no further tumors will be found when you are scoped in a month.

I am sending my good wishes your way.
I

At 79 years old I was initially diagnosed with a single high grade NMIBC which was removed via TURBT and followed by BCG treatments. One month after surgery I began a six weekly instillation of 50% BCG. Initially no side effects except temporary burning and urgency but by treatment four I was getting flu like symptoms ( body aches, headaches, nausea, fatigue etc) which lasted for 24 hrs. Regardless I finished the six treatments and three months later had three more again with progressively worse side effects, often lasting 48 hrs. Six months later I had three more treatments and had a reactive arthritis episode on the last treatment. This was a spontaneous ( within 48 hrs of the last treatment)occurrence of arthritis on my right hand, hip and knee. While my urologist wasn’t convinced it was reactive from the BCG, the rheumatologist I saw was convinced it was. We stopped the BCG treatment program at that time and opted for periodic cystoscopy to evaluate my condition. I’m cancer free at present but my first 6 month evaluation is due in September, so I’m anxious to see if I’m still NED. BCG is the gold standard and I wish I had been able to continue treatment. I’m not sure what options will be available to me if they find tumors at my evaluation. Will keep u all posted.

@quahog
I'm sorry you are experiencing these after-effects and it seems most are not without problems after these treatments.

However, it is surely good news that no new tumors were discovered and may you continue to be NED.

I don't know why some doctors are doubtful and question a patient when they report they are experiencing reactive arthritis. My doctor did this too and it annoyed me because I know my body better than he and if I never had this hip pain prior to the BCG treatments, then why doubt that possibility??

At any rate, if various difficulties are resultant from these treatments, what are we to do? Perhaps it is a case of: "We are damned if we do and damned if we don't". We need to possess continual hope for success.

Be well and I'm sending my best wishes. By the way, I just turned 81 years young.

@divey

So sorry you are having issues after BCG I have been dealing with bladder cancer for a little over 30 years it started when I was in my fifties I’m know 78 and have had over 30 surgeries to remove tumors. I have recently finished 6 BCG treatments and had my follow up Cystoscopy and no tumors were present so I’m scheduled to have a follow up 3 treatments in a couple of months. To date I have not had any problems absolutely no side affects so I’m feeling very fortunate and it breaks my heart to hear about all the people that are having issues I’m praying for all of you that once and for all we can all be cancer free and live out our lives without this horrible disease.