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Doctor stopped the BCG treatment after 6 treatment

3 years 8 months ago - 3 years 8 months ago #48633 by Alan
Wayne,

It's easy for me to say this now but, "one day at a time" no truer words were coined by whoever said it first. Who knows what tomorrow brings? Heck, I could have a coronary tonight or as the joke goes a turnip truck could hit me tomorrow. You will get through this and emerge stronger!

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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3 years 8 months ago #48632 by WayneM
Thank you Alan for sharing with me. I truly need all the mental support I can find right now to keep sane.
This is a very scary thing to go through for me. Sometimes I just want to go to sleep and wake up knowing this is all but a dream.

I'm hoping to meet others who are going through this and been through the same thing I'm going through, we understand more than others.

Thanks again and I'm happy that you are clear of the cancer now.

So the plan is now, my current dr canceled my cystoscopy on the 15th of this month and he referred me to OSU James Cancer Center on the 12th of next month.

I'm just a mess right now and feel scared, tired and don't feel like doing anything.

Wish me luck.

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3 years 8 months ago - 3 years 8 months 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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3 years 8 months 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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3 years 8 months 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
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3 years 8 months 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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