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Questions and venting

4 years 4 months ago #48048 by AnneH
Hi JodI,

I had a similar experience at Moffitt and was very disappointed. I understand the importance of going to a NCI hospital but I think I will continue with my local urologist. I filled out a survey and voiced my concerns about moffitt I also waited 3 plus hours for a consulate.

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4 years 4 months ago #48047 by CatherineH
Hello Jodie... I am so sorry to read about your Moffitt experience trying to get your BCG treatment. I can't think of ANY excuse as to why this should have happened, and it sounds like those trying to do the instillation were not properly trained.

I so hope you are able to find an alternate treatment plan. Hopefully your doctor can work out a way to make that happen. I understand completely not wanting to go back there for fear of having the same thing happen again. You definitely don't need this kind of stress on top of everything else you are dealing with.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
The following user(s) said Thank You: JodieG

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4 years 4 months ago #48046 by JodieG
OK, hmm, well - I went to Moffitt Cancer Center in Tampa, FL to begin my chemo treatment yesterday. To make a long story short, it was an over 3 hour traumatic experience that began with long delays (hours) and apologies (that was not the traumatic part) and ended with several catheter attempts (never successful) and tears and pushing and prodding my cancer bladder and finally me walking out of there over 3 hours later without the chemo. I'll tell you what - I didn't want to go to Moffitt in the first place and I DEFINITELY do NOT want to go back. We did talk to a patient advocate today at Moffitt, and now my main goal with them is ensuring they don't charge me for yesterday's fiasco. They don't even have enough of the BCG to complete my 6 rounds but they are expecting to get more in by the end of the month.

I made several calls to area hospitals to find out who else has BCG and even to the manufacturer of BCG, Merck, but it's hard to figure out who does what. Merck said they can't tell me which hospitals in my area get their BCG from them because Merck just sends the drugs to wholesalers. I spoke to one hospital who has the BCG available now, but said that if I went to them, I would have to transfer all my records and would have to leave my doctor, make an appointment with one of their doctors, and then get the doctor to write orders for my chemo and then schedule it with them. Even the new patient coordinator for that hospital discouraged me from going through this lengthy process. Another hospital will work with my doctor - he would just need to change my chemo orders to them, but he (my doctor) is out of the country right now! Plus, that hospital doesn't have any BCG right now but is expecting a shipment in the next week or so.

All I know is I do NOT want to go back to Moffitt. Any suggestions of how else to find out who has BCG in my area??

Thanks so much!
Jodie

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4 years 4 months ago #47979 by Nick-Nack
Thank you Jodie.. I also tried to comment on something you wrote but it didnt go on. I must of missed how to post. Just learning here. Thank you for responding and reaching out... You let me know also how things are going for you. In what I read about you we are on the same page almost same time line.... all the way to our age. Take care and thanks again for responding... Didnt sleep well last night....

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4 years 4 months ago #47977 by JodieG
Nick-Nack - I wrote a whole response yesterday but it seems to have disappeared. I'm so sorry for the loss of your sister - I can understand how that could only fuel your fear. But bladder cancer is very treatable, and you are starting treatments soon so I would venture to say you have a much better prognosis. Yes, I received a 2nd opinion and all medical wisdom points to BCG treatments. Please keep me posted on your progress and I will do the same!

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4 years 4 months ago #47968 by Nick-Nack
Thank you for the kind words... no one has ever said I had a fighting chance so.... Was not really sure if I was handed the death sentence. Thank you again ..... today was a better day...

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