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Question to those who took 6 BCG treatments: New tumors

Posted by Deidre77 @deidre77, Jul 27 12:31pm

I would like to know how many people who took the initial 6 BCG treatments and afterward a scope showed new tumors, chose to stop BCG continuance and sought alternate treatments.

Not only did it cause temporary reactive arthritis but I continue to have uncontrolled incontinence which I did not have prior to the treatment.

I wonder whether doctors suggest continuance of BCG despite its lack of success. I am scheduled to meet with a new surgeon tomorrow for a tumor removal to be scheduled soon and will ask his opinion since he is an oncologist/surgeon.

There is so much to research, to learn and asking about the experience of others who have gone through similar situation is a tremendous help. I will ultimately seek the advice of a doctor at an accredited cancer facility as well.

I appreciate any responses. Thank you.

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jr1466 | @jr1466 | Jul 27 7:46pm

I had one small (1cm) tumor identified after my first six BCGs. My original diagnosis was two separate areas of 6cm and 2cm, so it was not a complete surprise that there was still some tumor sticking around, especially given it was carcinoma in situ.

I had the 1cm tumor TURBTd in March, then did another six of BCG in April/May. There was no evidence of disease in my last assessment earlier this month, so I started maintenance BCG today and will do that every six months until 2029 as long as everything stays clear.

54m, high grade T1.

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Deidre77 | @deidre77 | Jul 27 11:18pm
In reply to @jr1466 "I had one small (1cm) tumor identified after my first six BCGs. My original diagnosis was..." + (show)
Profile picture for jr1466 @jr1466

I had one small (1cm) tumor identified after my first six BCGs. My original diagnosis was two separate areas of 6cm and 2cm, so it was not a complete surprise that there was still some tumor sticking around, especially given it was carcinoma in situ.

I had the 1cm tumor TURBTd in March, then did another six of BCG in April/May. There was no evidence of disease in my last assessment earlier this month, so I started maintenance BCG today and will do that every six months until 2029 as long as everything stays clear.

54m, high grade T1.

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@jr1466
I am sure you must be very pleased there are no further tumors and it is encouraging to hear some who are successful after having these BCG treatments. May this good news continue.

Sending my best wishes.

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marykayk | @marykayk | Jul 28 7:16am

I had 6 BCG instillations and was scoped 1 mo (NED) and then 3 months after that. I had a new tumor so had my 4th TURBT since September 2025. Now I am having Gemzar instillations for 6 weeks. Had 2 so far and was informed yesterday I have a UTI so this week’s treatment is canceled. I am wondering why I wasn’t given Anktiva. Has anyone been treated with Anktiva. I am high grade T 1. Wishing you the best in your journey.

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notaquita | @notaquita | Jul 28 7:37am

Hi @deidre77
I too am in your same predicament. I had a TURBT (removal of 3 tumors( in January. I started BCG in February and after 6 BCG treatments I was diagnosed with "reactive arthritis" which ended up bring Polymyalgia Rheumatica (a very scary autoimmune disease). I'm now on prednisone and have been taken off of the BCG maintenance and now starting the Gem/Doce (chemo) 6 treatments this week. I'm really nervous about all this medication going into my system. BCG, prednisone and now chemo. Please keep us posted with your situation and I will also. Don't mess around with the Reactive Arthritis. I was in horrible shape and could hardly get out of bed in the morning.

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dks2500 | @dks2500 | Jul 28 8:49am

Sorry to hear of your challenges. I just finished my initial six BCG treatments with no problems, and awaiting my scope assessment in a few weeks. No problems so far, and hoping for an NED result. I strongly support you seeing an urology oncologist at a nationally recognized cancer institute. I am being treated at such a clinic and have a lot of confidence in my medical team.

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gemdoc25 | @gemdoc25 | Jul 28 9:28am
In reply to @notaquita "Hi @deidre77 I too am in your same predicament. I had a TURBT (removal of 3..." + (show)
Profile picture for notaquita @notaquita

Hi @deidre77
I too am in your same predicament. I had a TURBT (removal of 3 tumors( in January. I started BCG in February and after 6 BCG treatments I was diagnosed with "reactive arthritis" which ended up bring Polymyalgia Rheumatica (a very scary autoimmune disease). I'm now on prednisone and have been taken off of the BCG maintenance and now starting the Gem/Doce (chemo) 6 treatments this week. I'm really nervous about all this medication going into my system. BCG, prednisone and now chemo. Please keep us posted with your situation and I will also. Don't mess around with the Reactive Arthritis. I was in horrible shape and could hardly get out of bed in the morning.

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@notaquita
The advantage of GemDoce chemo instillation is that it does not enter the bloodstream, unlike chemo infusion..
I've had 9 GemDoce instillations with minimal discomfort or side effects. NED a month ago.

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cnill | @newyorknill | Jul 28 10:19am
In reply to @jr1466 "I had one small (1cm) tumor identified after my first six BCGs. My original diagnosis was..." + (show)
Profile picture for jr1466 @jr1466

I had one small (1cm) tumor identified after my first six BCGs. My original diagnosis was two separate areas of 6cm and 2cm, so it was not a complete surprise that there was still some tumor sticking around, especially given it was carcinoma in situ.

I had the 1cm tumor TURBTd in March, then did another six of BCG in April/May. There was no evidence of disease in my last assessment earlier this month, so I started maintenance BCG today and will do that every six months until 2029 as long as everything stays clear.

54m, high grade T1.

Jump to this post

@jr1466 I just finished 2 TURBT, first to remove 3cm tumor, 2nd to biopsy muscle which came back clean.
starting BCG in 5 weeks after bladder heals. So appreciate you and all other sharing. God Bless and HEAL us all completely.

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notaquita | @notaquita | Jul 28 12:39pm
In reply to @gemdoc25 "@notaquita The advantage of GemDoce chemo instillation is that it does not enter the bloodstream, unlike..." + (show)
Profile picture for gemdoc25 @gemdoc25

@notaquita
The advantage of GemDoce chemo instillation is that it does not enter the bloodstream, unlike chemo infusion..
I've had 9 GemDoce instillations with minimal discomfort or side effects. NED a month ago.

Jump to this post

@gemdoc25
Thanks for the info. With the BCG i had yo use chlorox in the toilet after urination for 6 hours after treatment. Will I have to do that? Thanks again.

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kevinpm | @kevinpm | Jul 28 6:59pm

Hi. 73 y/o male. First BCG treatments failed. They went in and scraped out the tumors. Then, another round of BCG. Waited about 8 weeks for Cystoscopy and no tumors. I think about 50% of people fail first round. Hang in there. If you’re at Mayo you’re in good hands. If not, make sure you’re being treated at a cancer hospital.

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ella76 | @ella76 | Jul 29 6:47am

So sorry to hear you have a tumor after BCG. My Dr will not give me anymore BCG due to Reactive Arthritis and BCG induced cystitis I developed. Right now I am cancer free and my next Cysto is in October. BCG did a number on me and my bladder looks like a war zone so even if I get another tumor I would opt out of BCG. Good luck with your next opinion.

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