Top 3 centers or ...?

My mom hasn't started tx yet for advanced gallbladder with metastases in liver and I'm trying to figure out where I should spend my energies--getting her into Hopkins, Anderson, etc., or to Moffitt (she lives in Florida), which seems to be a fine hospital but not THE best according to rankings.  She's not going to have surgery, so will the chemo tx be standard at all?  If so, I would just get her into Moffitt.  I'm so confused and alone, please help??!?!?

 

On 8/7/2007 FiFaWall wrote:

My mom hasn't started tx yet for advanced gallbladder with metastases in liver and I'm trying to figure out where I should spend my energies--getting her into Hopkins, Anderson, etc., or to Moffitt (she lives in Florida), which seems to be a fine hospital but not THE best according to rankings.  She's not going to have surgery, so will the chemo tx be standard at all?  If so, I would just get her into Moffitt.  I'm so confused and alone, please help??!?!?

Sorry to hear about your mom.  My dad has GBC.  We're going to Tampa General tomorrow.  They have a clinical trial for GBC - Davanat + 5FU.  Moffitt doesn't have any trials right now that I am aware of for this cancer but can certainly administer the approved protocol of chemo.  Hopkins and some other big cancer centers may be willing to work with Moffitt so that she can have chemo at home and then just have scans and evaluations at their hospital.  I would say it would be worth getting a 2nd opinion from a big center - even if you just send over all of her films and contact them via phone.  Another option is Mayo in Jacksonville. 

Definitely go to Mayo in Jacksonville!  I had several bad experiences at Moffitt - that was years ago, perhaps it has improved.  The surgeon I had (Charles Cox) was wonderful and competent - the support staff sucked.

Good Luck!

 

On 8/7/2007 FiFaWall wrote:

My mom hasn't started tx yet for advanced gallbladder with metastases in liver and I'm trying to figure out where I should spend my energies--getting her into Hopkins, Anderson, etc., or to Moffitt (she lives in Florida), which seems to be a fine hospital but not THE best according to rankings.  She's not going to have surgery, so will the chemo tx be standard at all?  If so, I would just get her into Moffitt.  I'm so confused and alone, please help??!?!?

In my opinion the BEST place to go is MD Anderson.  They are ranked #1 at US news and world report.  We were there in 04 and 05 for 7 mo. with my husband.  He was given 3-6 mo. in our hometown.  Well, this is 8-07 and he is doing great.  We go to Houston every 6 mo. now and have other treatment locally.  Everyone is wonderful down in Houston.

 

Dr Charlie Cox from Moffitt is the BEST surgeon but I have to agree with the other, the other part of the staff at Moffitt is terrible.  Wait time is 5 hours or more for appointment.  They shuffle you around like herds of cows. Dr Charlie Cox did my surgery and then I switched to Dr. David Wright in Tampa as my oncologist.  Dr. Charlie Cox needs to get out of Moffitt in my opinion and I think he soon will do that.  I just had a terrible experience at Moffitt with miscommunication from several people and received the total run-a-round for a month.  If you want individual attention, this is not the place to go. 

Tampa General is an outstanding hospital with many, many excellent doctors.  The staff, nurses are wonderful. 

 Moffitt is really, really big and unless she needs surgery, I think Tampa General would be your best choice. If she needs surgery, I would suggest Dr. Charlie Cox and then switch to another oncologist.

I wish you the best. God Bless. 

 

 

Hope this helps. 

 

My opinion is, go to a top hospital.  At the top hospitals in my state, they gave me 18 months tops to live, but said I could die at any minute.

I went to a top hospital, 8 hours away.  That was almost three years ago.  My treatment has easy.  If I had a side effect, the top doctors figured it out and I went merrily along my way.  So much so that I worked 50 hours a week to make up for the time I needed off for chemo.

However, once everything was worked out, I stayed in my city at the best hospital here (not one rated in US News and World Report) and they messed up my chemo.  I wound up spending the day in the hospital, as they called my Top Doctors, to figure out how to fix me.  I never went back the the hospitals in my city again. 

My doctors at the U of MN quit asking me why I didn't get things done in my city. 

 

There's an MD Anderson in Orlando. I go to the one in Houston where they at least have seen the type of cancer I have. Please, if you can afford it and can travel, go to the best!

Call or write to Dr. Andrew Kennedy at wake Oncology in Cary NC. My wife had a Klatskins tumor that was supposedly unresectable (per doctors at Memorial Sloan-Kettering cancer Center in NY and the famous Siteman cancer Center at Barnes Jewish Hospoital in St. Louis. On July 25th Dr. Kennedy destroyed the tumor with Yttrium 90 microspheres in a 90 minute outpatient procedure with the only side effect being a few days of acid reflux. No surgery is required. He has done many liver tumors also. He has a long background with cholangiocarcinoma and is knowledgable about the disease. He will email back if you contact him that way. His technique is becoming world famous but you must find a center where they do a lot of these.

If you are wondering how to get there, they offer free flights through

http://www.angelflightcentral.org/

or

http://www.corpangelnetwork.org/

 

Their is also free lodging through Hope Lodge

http://www.cancer.org/docroot/SHR/content/SHR_2.1_x_Hope_Lod

So there is help out there.  There is no reason why someone shouldn't be able to go to the hospital or Doctor of their choice. 

My husband goes to MD Anderson in Orlando and as far as we're concerned they are the best.  He has advanced, non resectable nsclc. The doctors and staff we have met are professional and supportive. They tele-conference with Houston on difficult cases.  Good Luck