Doctor stopped the BCG treatment after 6 treatment

6 years 1 month ago #48625 by WayneM
Hi, My name is Wayne,
I received my 6th BCG treatment last Wed. I was told I would have 6 weekly then once per month for 12 months.
Right after the nurse put the BCG into my bladder the 6th time she tells me the doctor said he was stopping the treatment.
He was not in office that day, so I called the next day and asked his main nurse why did he stop the treatment.
She said to me that since I was having joint and muscle aches for about 3 days after each treatment and needed to take narcotics for the pain it was too dangerous.
I was not too happy, I want to fight this! I wanted to go through all the treatments...its much better than surgeries!
Anyone on here know why he would stop the treatments? Is it really that bad that he needed to stop? Should I go for a second advise? I am a fighter, and I was willing to take some pain and tiredness to slow the recurrences of the bladder tumors.
I am really nervous about this...anyone have any advise please?
Thank you.
PS I live in Ohio.

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6 years 1 month ago #48626 by sara.anne
Hello Wayne....glad that you found us!

One of the very rare side effects of BCG is a very serious arthritis. Your urologist is being very careful about this and doing the right thing. Brave as you are, there are some things that are best avoided!!

Many urologists only prescribe the initial 6 weeks of BCG and then do cystoscopies every three months for two years to be sure that the cancer has not returned. I was on the protocol where, after the initial 6 treatments, I had it every three months until 2 years had passed. I was on a very reduced dose by the end due to side effects. My urologist told me that not many of his patients made it to the end.

You have made it through the most important part and your doctor really seems to know his stuff. It would be considered malpractice to give you any more right now. You have had enough BCG to have an effect.

What was your diagnosis?

Relax and be proud that you made it through all six...some patients do not!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 1 month ago #48627 by WayneM
Thank you for responding back to me.
My Dr said I have a rare bladder cancer. I had 4 surgeries removing the tumors.
This last time the tumor bored through the lining of the bladder wall but not into the muscle...said it was going side ways. He said it was not a low grade T1 and not a high grade T1 that is whats strange to him.
But he wanted to treat it as a high grade to be safe.
I have read where people get these side effects "pain in the joints and muscles" and dr's would prescribe them pain meds, which he did and it helped 100%
Now just having 12 more to go once per month I would think it would be easier than every week.
I had said to the nurse yesterday that after the cystoscopy on the 15th of this month I wanted to talk to him about the why's and what's etc....I said I could do this and just take aspirin and no narcotics.
And if he still says stop the treatments I might want another option. Well I get a call today from OSU James cancer center saying I have a appointment with them next month.
I did not say I wanted that, I said I "might" want that after talking with my Dr.
I am so confused right now and scared. I wanted to go through all these treatments and beat this cancer. I have high blood pressure and anxiety, which today is going off the charts!
What is so dangerous about finishing these treatments off?
12 more once per month would be easier than once per week like was planned.
Im scared, confused and dont know where to go.
Im trying to get my Dr to call me and explain to me the why's and what's, but he is always on the go...even when I see him he runs in then back out of the room like Im a number.
I pray something good comes out of this...I dont want to loose my bladder or have the cancer spread. I pray to God everyday and night for his help...and this is whats going on :(

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6 years 1 month ago #48628 by sara.anne
Really, Wayne...if you are experiencing serious side effects from the BCG, you do NOT want to take any more. The purpose of the BCG is to stimulate the immune system in your bladder (and it works on the rest of your body also) so that it fights the cancer cells. It appears that it has REALLY kicked up your immune system a bit too much. These effects are cumulative. They become worse with each dose. It would NOT get better if they allowed you to go on, and it could become very bad.

A consult at OSU sounds like a very good idea. The minute the doctor said that your situation was "unusual" that is where I would have headed. The urologists at a university center have a lot more experience in unusual or complicated cases and can offer alternative treatments that are not available elsewhere. You will be in good hands. Evidently your current urologist seems to feel that this is a good idea also.

It is natural to be anxious any time the "C" word comes up, and with the issues that you have had you would be weird if you didn't! However, remember that this can be a very treatable disease and you are headed for an excellent place to get that treatment.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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6 years 1 month ago #48629 by WayneM
Thank you for your kind words. I think your right about going to OSU. That is where I first started going 4 years ago and had some other 6 week treatment of something that started with M. The last time I seen that Dr he said I was clear and to come back in 3 months so he can have a look.
Needless to say I didnt go back, I dont like them looking into my bladder it hurts.
2 years later I started bleeding again, I knew something was wrong, so I went to a Dr closer to our home and here I am.

OSU is over an hour away from our home, but is the best place for me to go.

A lot of these country Dr's I dont feel safe with in the first place. But you maybe right, he knows what he is doing and thinks its best that I go to OSU.

I hope and pray that they can help me. I do not want to go through a 5th surgery :(

Thank you again for your kind words. I pray that everyone here and out there will get the help they need. God works in his time and his way.

Again, thank you for the kind words...Im calming down some now....just the waiting game now I guess.

God bless you.

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6 years 1 month ago - 6 years 1 month ago #48630 by Alan
Wayne,

I will chime in also. There is no "exact" science on how to attack this. I believe it was a highly respected Dr. Herr (I think he is now retired)from one of the NYC hospitals that used just 6 installations as his protocol and that was it. I have seen what you are on with 6 then one a month for a year. Some are 6 then 3 every 3 months, tapering to 3 every 6 months over five years. Mine had me do 6 on, 6 weeks off then 6 more and no more just because every installation holds risks. As many will say the cystoscope is the "gold" standard. Chances are good your 6 will do it anyway. I am one of the fortunate ones as I have been free 7 years! I still have a yearly scope and schedule my annual physical 6 months apart from that with a cytology. So, let's trust that will end it.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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