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YAY... Ben wants to get a third opinion. Can those of you that have been to MD Anderson please send me names of the doctors you had and your experiences at MD Anderson???
Thank You!!!!! (Can you tell I'm excited???)
Cathy
I saw Dr. Pisters for my 2nd. opinion. I really liked this man. Very personable, clearly he knows his medicine. Very clear, supportive and up front. But Dr. Kamat is also very good as others can attest. I'm sure they are all good. You're not a surgeon at MDA unless you are the best of the best. The nurses and techs and all the staff are trained, well trained and they work as a team. All they do is cancer, that's all. They're good, really good. Really happy for you and Ben. Will always have you in my thoughts and prayers.
Thank you, Cheyenne.
So in our case, would it be best to see a Surgeon, or Urological Oncologist???
Cathy
I would let them make that decision, they work so closely together. The admissions process will take care of that for you anyway. They will set everything up and get you started where you need to be. They will take good care of you. They will get you started off in the right place.
Sounds great. Do they figure that out before we go there? Sorry, I'll probably be full of questions for you!
Cathy
So happy to hear that you and Ben are on the same page. Leave some room in that bag you'll pack to take along all the well wishes from your friends!
Excited for you too!
They will have it figured out either before you go as Ben has lots of medical records from which they will get lots of pertinent info, but for sure when he is admitted or seen at the clinic for assessment they will get it all worked out. Lynda has years of experience with MDA and she will likely be joining the discussion and can give you probably more info than I can, but really, all you need to do is get in touch with MDA to be seen or have your doc refer him and they will get on this right away, especially given Ben's current status. I am sure he will be given the highest priority. They have a well oiled machine and can get things organized and set up really quick.
Cheyenne,
Thank you SO much. That puts my mind at ease. Looking forward to hearing from Lynda as well.
Thank you Mendo Lady! I am going to plan a mini-vacation when we go, to celebrate our 30th! It won't be Greece, but they do have Islands in Texas..
Cathy
Cathy, if you would like my phone number and e-mail just message me or put me on your friend list (if you dare!) and I can send this info to you securely.
And yes, Texas does have islands actually. In fact yo will be quite near Galveston and some other islands, just outside Houston. Houston itself is a great city to visit and to live in. Feel really bad about your change in plans on your trip, but let's just consider that a change in plans, just a postponement.
I am going to add you to my friend list right now. THANK you so much. Would love your input on "where to go" in So. Texas. Willing to do S. Padre Island, Corpus Cristi, etc. Where would you recommend. And oh, by the way, this is my last question, as you should be SLEEPING!!!
Cathy
Ask as many questions as you like. And South Texas is great. You cannot be disappointed with S. Padre Island. Texas is Hugh as you know, and we are fortunate to have the coasts, the mountains, deserts, plains, hill country and everything in between. S. Padre Island and Corpus Christi are some of my favorite places I can get you a Texas travel guide. Let me know where to send it. live about an hour and a half away, you are welcomed to stay with my wife and I or at our guest house if you need to. I responded to your message. You have my contact info. If you need anything just call, anytime. If one f my dogs answers don't leave a message, just call back. Give Ben a Texas guy hug for me.
Cathy,
Good luck at MD Anderson. There is a clincial trial going on there right now for people in the same shape Ed and Ben are in. Ed's oncologist here in Atlanta looked into it for us. We decided to start out here with the M-VAC first . There is also a good one at Sloan Kettering with a pill, but they are full at this time. Those were to two best options for us at this time. Ed's oncologist said that you will have to travel every two weeks to the trial at MD Anderson so be prepared for that. Maybe Ed and Ben will be there at the same time.
We are praying that you will find a treatment there that will work!
Love,
Candon
Hi Cathy,
At MDA, they do have the surgeons and medical oncologists separated and you will likely see an oncologist. After they get Ben's records, they will decide who has more experience in cases like his and go from there.
1. The site for self referral is www2.mdanderson/org
/sapp/contact/selfreferral/index.cfm.
2. They are open Mon. thru Fri. 8 am central time
until 5 pm central time. They will walk you through
what you need to do.
3. You need to go to your Doc in CA and sign a
medical release form. He can also refer you...I did
both and got in more quickly with my self referral.
4 There is a hotel that is connected by a heated, air
conditioned walkway to the clinics and the hos-
pital. It fills up quickly and if you want to stay
you must book as soon as you get dates. There
tons of other hotels around that have shuttles to
the hospital and clinics. They will help you with
this if you want. There are also apartments that
come with almost anything you need if you need to
stay for a long time for treatment.
It usually takes about 2 weeks from when you contact them until you are in. I will be happy to answer any other questions you may have and do whatever I can to help ya'll.
Remember, ALL they do is cancer.
Lynda
One more thing Cathy...I called the number on the web site and had their representative fill out the paper work. They have self referral representatives for each different clinic(urology, leukemia, etc.). The representative I worked with was Vanetta and she was wonderful. I saw Candon's post after I posted...if there is a stay of maybe a few months, you could just get one of the apartments, either drive here or rent a car and go on day trips, etc.(Galveston, Austin(Cheyennes guest house!, etc) when Ben is not doing Chemo and feeling well enough. I think MDA actually puts you in house to do the dose dense MVAC(until your counts are ok, etc.)...not sure. There is another couple here who just finished chemo prior to RC. (coming up)and I think he was inpatient for the chemo. I'll probably think of more later.
Lynda
I saw Dr. Pisters. Originally, I was scheduled to go there the day before Hurricane Ike was supposed to hit. We got a call while we at the airport that they were going to be closing and soonest was a week that would could get an appointment.
We flew the night before, got there early, went through all of the paperwork, gave them all the records and slides, and got called in about 1:30 for our noon appointment.
We waited and waited. At 6PM, Dr. Pisters came in. By this time my wife and I were not in a good mood. The office was closed except for us and the staff had gone home and the lights were out everywhere but the room we were waiting in. I guess they were trying to catch up from the few days that they were closed but I was not too happy about being the one that got pushed to the end.
Dr. Pisters was 100% correct about my situation and his treatment plan was the same as my 2nd opinion doctor at University of Colorado Cancer Center in Denver. I had been diagnosed as having my CIS return and spread to both kidneys. Dr. Pisters said that it is so rare for that to happen that he would just not pay any attention to the test. He wanted to schedule another TURBT but I had already had one scheduled with UCCC and decided to stick with it.
We decided to go to University of Denver for treatment. I really liked my doctor there and it was only an hour away from our house so my kids could visit me. It was correct that my kidneys were clear and my urologist did find another area of CIS that had become muscle invasive so I scheduled my RC there also.
I'm sure MD Anderson would have been fine but I was a bit jaded after such a long wait. Dr. Pisters is very highly regarded by the uro that did my surgery but I just wasn't happy about the visit. I didn't understand how we could just ignore the kidneys when I had positive cytologies from my original local uro. Like I said, he was right though. It is very hard to get cytologies from kidneys without samples being contaminated when traveling back through a cancerous bladder.
My 2nd opinion uro at UCCC said we'd biopsy and also do brush biopsies of the kidneys. I felt like that was better than just ignoring the kidneys until everything else (bladder) was taken care of. If it had been in my kidneys, I may have opted not to get the RC because I probably wouldn't have been long for the world so there wouldn't have been much point.
That is my experience but again, he was right. He just didn't explain it to me in a way that I felt comfortable he was right at the time and I was already not happpy about having to wait in the little exam room for so long.
Mike
Hi, we are here at MD Anderson now. Bob had his r/c last monday. Will be going to the Rotary House next to hospital Monday or Tuesday. We have Dr. Kamat, he is away atthis time. Remember this is a teaching hospital very cutting edge. We only saw Dr. Kamat for one visit and surgery. He travels lectures and is a professor here. There are manywonderful doctors here. The place is vast and you can get lost, but its a sure bet youwill get good treatment here. All my best, Joycee
another thing, Dr. Kamat is an oncologist uroligist surgeron, if that helps, I read a psot about waiting, unfortunately that happens here. It is vast as I said and people waiting all over. I did not have much of a wait problem, but it could happen anyplace. You need to feel comfortable about your decision, Joycee
Sorry about having to come to MDA when a hurricane is coming in. Houston is on the coast. Some hospitals were totally destroyed. Other closed for months. It was pretty bad, unfortunate timing. I sure can understand your frustration. I was on call for search and rescue and Houston is where my command center was. I had to leave my wife, difficult to do when there is a Hugh storm coming in. Dr. Pisters has a family too. I'm sure he would rather have been with his family, but I know for sure he chose to work instead. I think that is commendable. Sure bad timing, one of the worst storms in our history, being part of the rescue process though, I can guarantee that there were people stranded with little kids on roof tops, and clinging to trees for many hours. At least you had light. The luck of the draw. With my luck I would go to CA and get there in the middle of an earthquake!
Thanks Lynda for joining the discussion. You have more experience with MDA with anyone.
As for the waiting thing...the first day I went to see Doc Dinney, he was working me in and I knew that(not unusual with first appointments as they try to get you in as soon as possible). We waited for hours. I was fine with that.
It is a large institution and there are long waits sometimes. I think in some instances, it is unavoidable and in some not so much. Guess it is up to each of us to accept what is acceptable to us and what is not.
Having said that, there is wonderful care available there is you learn how to navigate the bureaucracy...and you for sure need to do that!
Lynda
Lynda
Cheyenne,
Been through 3 big earthquakes in California, and they are scary, but pretty quick. I'd take them over yearly hurricanes and tornados anytime. Of course, I wasn't on the bridge that collapsed, or in the shopping mall that fell apart, or under a freeway overpass.
Cathy
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