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7 years 8 months ago #42151 by warrentug
Howdy...just to 2nd what Mike has said, get a 2nd opinion if only to back up your doctor. I also got a 2nd pathology report on the TURBT sample because that is what everything is based on...you don't want one doctor calling it T1 and have another call it T2. Your doctor can arrange for the sample to be mailed out to any of the top centers you want.

I switched doctors because I didn't "feel" comfortable with my first doctor so I know how important it is to go with one that you can trust and have good rapport with.

I sugest talking to him and laying out a battle plan like Mike had...have a plan for each check up and pathology report. My plan is to have the RC as soon as another T1 shows up.

Best of luck.

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7 years 8 months ago #42150 by DougG
Razorback,

Doug and I live in East TN; Jordan is now in Atlanta working on his PHD at Ga Tech. He is still a huge Wooooo Pig Sooie fan. He majored in electrical engineering at the University of Arkansas. I have the highest regard for UARK.

I agree with the others that seeking a second opinion would be a wise move. Doug went to Vanderbilt (since it is highly regarded and is closest to us) for his second opinion. He continues to see a local urologist; the doctor at Vanderbilt totally concurred with everything the local uro had said and done. It is a reassuring and prudent thing to get that second opinion. Then, if things ever do progress, you do also have a contact from a major bladder cancer doctor.

Best wishes and fight like the HOGs!!

Anita

Anita
Forum Moderator
Caregiver

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7 years 8 months ago - 7 years 8 months ago #42149 by mmc
I'd love to attend but don't think I will be able to. Going to Dominican Republic next week for my son's wedding. I'm a business consultant so I don't really get too much control over my calendar because it kind of depends on when I have active client engagements (which I will have lasting through the event). I wish I could though!

I'd suggest at the very least, you get on the Sunday evening chats. Those are every week here on the site. I don't do those but other great folks do and I understand they are very helpful for people.

Don't wait to move forward on treatment. High grade cancer means high grade cancer. T1 means the very next step is muscle invasive and you don't want to get there. Good news is you did catch it before it got there. I originally had CIS but when it came back two years later it was muscle invasive. I already planned to get my bladder out if it came back at all so I just followed my plan. That was 3 and half years ago now and I'm cancer free. :)

You can start BCG AND schedule yourself for a 2nd opinion at the same time. You just want to be ABSOLUTELY POSITIVELY sure there is no progression beyond T1. T1 is invasive by some definitions but mostly invasive is defined as "muscle" invasive. The instant that happens you want the bladder out in the next week or so.

Some doctors would lean more toward RC when there are multiple T1 tumors. Just don't overestimate the value of keeping your bladder if it can kill you. Plenty of us here are doing fine (years and years later) without one.

No need to rush into it either. Study all you can but at least go to a top bc doctor for the 2nd opinion. Starting BCG isn't going to interfere if you later decide to just get it out. If you do wind up needing an RC, go to a top place with a doctor that does at LEAST 50 of the surgeries with your preferred diversion (neobladder, Indiana Pouch, ileal conduit) a year.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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7 years 8 months ago #42148 by upnorth
Razor,

I might have misunderstood you in you'r last post, but I hope you start you'r BCG treatments sooner than 5 weeks.

Welcome to the site. 13 years as teacher proves that you are tougher than cancer. My advise is to face it head on. Get going on the BCG, but also seek a second opinion. Be as open and honest about it with you doctor as he has been with you. But never forget "YOU" are the one betting you'r life on it, no-one else.

My father waited to long to get help and it killed him really fast in his mid-fifties. Please don't make the same mistake he did. Show your family how much you care for them, and teach them how to do this the right way.

Now is the time for you to be a little selfish and forget about the company and others until you get a handle on this. Keep your wife and kids happy, and informed as to what is happening now, and what you expect will happen as things go along.

Sorry to come on a little preachy, but I have been in your families shoes, and in yours. I just don't want you to take to long making a decision as to the next step.

We are all here for you at anytime.

Mark

Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
"Please don't cry because it is over..... Smile because it happened!" {Dr. Seuss} :)

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7 years 8 months ago #42143 by razorback
Thank you Mike for your messages and wish you continued success with all your efforts. I have noticed the annual ABLCS annual meeting and conf is in about 5 weeks in Boston. Do any of you plan on attending that? Was wondering if someone as myself could benefit with attending it as part of my information gaining process in making my next plan of attack. Or is 5 weeks plus too long to begin said attack.

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7 years 8 months ago #42142 by mmc
It's fine to have your local doc administer the BCG but you REALLY, REALLY ought to see about a 2nd opinion from a major bladder cancer doc. Your doc can probably even recommend and refer you to one.

Doesn't mean you don't trust him. He'd likely get a 2nd opinion himself if it were him. Ask him. That's kind how it is done.

Good luck!
Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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