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Newly Diagnosed - Large Area

5 years 1 week ago - 5 years 1 week ago #45576 by Alan
There a lot of us that are G3T1 or TA and still have our bladders. As you mentioned we also have the possibility eventually of a cystectomy but, it is not a certainty and you may still keep yours. Heck, something else may easily get me! You just need to see what can be done about the large area occupying the bladder. Whatever happens the best way to look at it is at least you are on your way to solving the problem. One piece of the puzzle is sorted-you have BC and the rest will fall into place and your life WILL go on! I am sorry to read about many supplements excluding BC-that stinks! That will eventually be something I will have to face.

Keep the board posted. There will be someone that help with answers.

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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5 years 1 week ago #45574 by larryk
Thanks Alan. I just found out that none of the Medicare supplement plans will underwrite me due to my BC. So I'd be on straight medicare and have to absorb the 20%. All I have read on G3T1 seems to lead to a RC down the road eventually, BCG treatments or not. I wish I was CIS or Ta, but I'm not. I am hoping for the best, but trying to plan for the worst. I think everything except a RC can be handled well at the local level, so it's the possibility of a RC that has me concerned as to getting the "best" surgeon.

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5 years 1 week ago #45572 by Alan
I am just 61 so I can't help you on Medicare but, it also seems like you may have answered your own question. I don't remember what the instillation of BCG was billed out. I want to say less than $200 maybe even $100.

I don't know what Medicare supplements cost and cover but, I understand they do cover most of the rest. This ACA/Obamacare is still going to change a lot of senior healthcare. In Comal County doctors are NOT taking non established (new patients) based upon this new law reimbursements. There are surprises coming for all from the doctors I know.

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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5 years 1 week ago #45569 by larryk
I have a big decision to make before 12/8. I do not see the uro-oncologist until 12/10. Currently my Medicare HMO severely limits my doctor choices. I can opt out of my Medicare HMO if I do it before 12/8. I am thinking about this based on the size of my tumor (covers 30% of my bladder)and the likelihood that the small sample biopsied (G3T1)will be consistent all the way across the tumor area. It seems a long shot that somewhere it has not invaded the muscle. So, if I in the near future am diagnosed with T2 or higher, I will be in the hands of that small group for insurance purposes. If i went out of network I assume the cost of such a surgery would wipe me out financially. Switching to original Medicare would open up a much larger option I believe and even some of the best BC hospitals in the event removal is required.

However, if I am am lucky and the entire tumor is G3T1 and BCG is recommended, I would be paying 20% of the BCG treatment costs as paid by Medicare. Does any one know how much Medicare pays for BCG treatments so I have some idea of my potential out of pocket costs?

If I do not make this choice before 12/8, I am stuck in my HMO plan until 2015. I'd hate to find out before then I need removal and be so limited to local doctors for the procedure. Any help will be appreciated.

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5 years 1 week ago - 5 years 1 week ago #45566 by Alan
MD Anderson is well staffed, I have had 3 or 4 friends go there for BC. With the prostate being extra involvement your case is a little more complicated as an extensive TURB seems to be important. Maybe even a CT scan to rule out other involvement-mine ordered that as a precaution-your referral should know what to do as he has your test results. From what I understand MD Anderson will work with your local URO as needed, at least that is what my friends have said.

BTW, 2 of them play in a golf group of about 30 guys with me and so that makes 3 of us with BC. One had to have a cystectomy 18 months ago and he is doing well, the second is 3 years out with one re-occurrence and I am 5.5 years out and clear. So, there is a lot to be positive about.

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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5 years 1 week ago #45565 by larryk
Thank you Alan. Yes, that's my interpretation too. Unfortunately my Medicare HMO is not accepted by M.D. Anderson. However, I will pay out of pocket for a second opinion there regardless.

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