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Considering a trip to MD Anderson - questions

8 years 5 months ago #37584 by BillM
Bambi,

It's hard to guess what she will do for treatment. If it's G3, her and most of the doctors you will talking to will go after it aggressively. G3 cis has a high incidence metastasizing, especially if it has went past the lining into the first layer of muscle tissue. My urologist told me that G3 cis and BCG might work if all the G3 was pulled out but the recurrence numbers down the road said it would come back. He still recommended chemo and RC.

Bill

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...

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8 years 5 months ago #37581 by Bambi
Hi Bill-
We are definitely seeing Dr. Wilson on Monday. When you say you think she will want to treat "aggressively", are you thinking she may think my husband should have the cystectomy now rather than doing the 6 weeks of BCG and then the 3 month wait? This is the scenario in our heads where we would then see ourselves wanting to fly down to Houston and find out what MD Anderson says. If they agreed with Dr. Wilson, I would imagine that my husband would much prefer our coming home and having Dr. Wilson treat him. I did fax the records to MD Anderson this morning and will wait to here from them. Just thought we should get that ball rolling. My husband also wants me to call Dr. Seth Lerner at Baylor down there as well.
Thanks so much again
Bambi

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8 years 5 months ago #37580 by BillM
Hey again Bambi,

See Dr Wilson for sure. She probably will look at treatment aggressively if it is G3 cis. Instead of the usual hurry up and get it fixed, she looks at long term survivability and the best way to avoid having it come back. Be sure to have her discuss all the options available.

We looked at MD Anderson but our insurance wouldn’t cover treatment for chemo or RC out of state. MD Anderson would have been good as I have family in Pasadena and Dear Park. The other challenge was having two of our kids in school and that getting disrupted. When I talked to the rep at MDA, it sounded like they preferred that I stay in the area until the post op check up before heading home. If the option is still there for a second or third opinion at MDA, get it, I got three and they were pretty much the same for treatment.

I can’t say enough about Dr. Wilson and her staff. When we went in for our first visit for a second opinion, my wife decided she was the doctor to go with.

Bill

5.24.10 Final staging T2G3 7.28.10 Started Gemcitabine, Cisplatin neoadjunctive chemotherapy
11.2.10 RC with NEO 11.18.11 First year CT shows possible liver tumor
12.8.11 Confirmation of TCC BC mets to the liver 6.27.12 Final round of Dose Dense MVAC
7.26.12 Final scans showed no tumor or no...

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8 years 5 months ago #37579 by Bambi
Thanks George- I think Bill is one of the ones who mentioned Dr. Wilson to us. She sounds like a wonderful Dr.
We spent this morning going to the medical center here and getting copies of the relevant information. I spoke with two lovely people at MD Anderson and got their fax number. We just came from faxing all that to the man will be our "patient coordinator". So we have initiated the process with them in case we need to go down there .
Bambi

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8 years 5 months ago #37578 by GKLINE
I may be mistaken, but isn't Dr. Wilson the Dr. who cured Mike? If she is, you are in good hands indeed.

MD Anderson is indeed THE Place to Go. I was on my way there until my Surgeon informed me he spent a few years there before coming to upstate NY.

The Best of luck

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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8 years 5 months ago #37577 by Bambi
Hi to everyone this morning. My husband does have his appointment with Dr. Shandra
Wilson in Denver on Monday. Others on here have mentioned MD Anderson more than once and it would be a logical choice for us if we decide to pursue a third opinion. Our thinking is to start with Dr. Wilson. If she says something radically different than his local urologist, however (as in let's do RC right now) we would want to get an additional opinion. MD Anderson is a logical choice for us because I grew up two hours from there and many people in my hometown have gone to MD, including my father over the course of many years. We would have a support system nearby. In talking to people down there, my sister keeps hearing about Dr. Seth Lerner who is at Baylor in Houston.
1. For a third opinion, would you just go to MD Anderson for diagnosis rather than to Dr. Lerner?
2. Is there a specific Dr. at MD Anderson that you all know about and would recommend?
2. Is it worth it to call down there today to see if we could even get an appointment in the next couple of weeks? We were going to wait to see what Dr. Wilson says on Monday, but started to realize we only have two weeks until his treatment is scheduled at that point and my husband really does not want to delay the start of things if that is the proper road. I probably will call down and at least ask the question of how far out they are scheduling...
Well- yesterday we finally told our daughter who is in the last week of her graduate school first year and was pretty overwhelmed by everything she had to get done. It felt much better to have told her and I stayed up last night to email our core close group of friends who I knew would be wondering why we've altered all our upcoming travel plans and would be asking soon how things went at the Dr. Each time we tell someone it feels like it just makes it more real.
Thanks a lot!
Bambi

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