9 years 5 months ago#31274by Christine Springfield
Thank you for sitting down and taking the time to put these posts together. Can't tell you how many people just don't seem to get that they are gambling with their LIVES when dealing with cancer... any kind... every kind.
My next door neighbor and me and my husband's best friend, Charlie, was diagnosed with cancer the same day I was. We stopped at his house on the way home from the cysto where the tumor was found and told him the news. We were quite shocked that he had also been to the doctor that day and diagnosed with lung cancer. I hauled ass to M.D. Anderson where I was treated by a wonderful team of bladder cancer specialists and I am here today. He chose to save 30 minutes of drive time and went to a hospital in College Station. We spent 6 months trying to talk him into joining us at M.D. Anderson. We could even car pool! No luck. He died 360 days after his diagnosis in a hospital bed in College Station. When I talked with him the night before he died, he had JUST (moments earlier) found out that his cancer was all over his body and that he was dying. I will NEVER forgive that hospital for keeping him in the dark about his cancer and I will never forget the fear in his eyes as he lay there dying. I don't know that his cancer was curable from the beginning, but I do know that had he used the incredible resources available to him, he would not have suffered that shocking moment at the end.
I'm helping one of my neighbors right now who was diagnosed around Thanksgiving with breast cancer. She's 43 and works at that same damned hospital Charlie went to. She has chosen treatment there, too. We tried to talk her into going to M.D. Anderson, but had no luck. I hope it works out for her... I really do. She has a lot to lose. A husband, 3 kids, a lot of life ahead of her. Why, why, WHY don't some people get the best possible treatment for cancer? I just don't get it.
Just wanted to let you great people know that I have an appt. for a 2nd opinion with Dr. Raj Pruthi on April 29th. Dr. Pruthi is the doc. recommened by Pat. I think this is the right decision, I feel very good about it. Thank you for your help and we will be in touch soon as I seem to have an unlimited amount of questions and you seem to have an unlimited amount of wisdom and experience. LORI
Mike...i actually got knocked off the site while trying to get another link and forgot to add......and very important...many university centers are terrific....USC/Norris Keck School of Medicine, UCSF, U. of Pittsburg, Indiana U. where they invented the Koch pouch,the University of Chicago and on and on....i certainly did not mean to rule them out as i checked them out also and they were also all listed in the US News and World Report. And there are some terrific uro/surgeons who are not with a major bladder cancer center but are associated with a major hospital like Dr. Michael O'Donnell at the U. of Iowa and Dr. Soloway at the U. of Miami and more.
I was just trying to give a hint as to how and where to look when confronted with this diagnosis..its a great starting point.
As you know we have had many on this site with T1G3 who sucessfully have had no recurrence with BCG and also with Mitomycin
C.......Warren is 8 yrs out without a recurrence....our dear old friend Rosemary is about that far out without recurrence and happens to see Dr. Pruthi in N.Carolina. It just requires due diligence and a great doctor.
Right Pat. I didn't say university hospital. That was Lori who mentioned Univ. Hospital.
I said to ask you. You gave Lori a name already and she mentioned that she is going to get an appointment with the doc you named.
Lori: Since you are going to doc that Pat mentioned, you should listen carefully to what they say. As Jack said, they will want a reTURB if they don't see good margins all the way around. Often some is left and often not enough margins are obtained all the way around.
Print that article about T1G3 and take it with you. Also take my flow chart. Use those two things to ask questions and get a good understanding of the risks/probabilities with BCG or RC. If it was T0, then I'd recommend BCG as the first course of action (but I'm not a doctor). I just don't like the odds so much with T1G3 but I also tend to be very aggressive about treatment.
When I had my CIS recurrence, I would have opted for RC even if it was still T0. In my case, it had gone from nothing seen in the cysto to T2 in weeks so I'm glad I got my bladder out.
You are doing the right thing by going to the specialist.
Just one caveat Mike..not all universitys are major bladder cancer centers.....some are but many are not. Case in point where i live..a major city but a dud when it comes to bladder cancer.
One of the first things i did when diagnosed was go to US News and World Report for the top hospitals in the US and whittled it down to cancer and urology. Then i went to each of the sites and went into the urology department or Genitourolgy dept and read bio's...if the main interest was prostate cancer...well on to the next bio. I went to the top cancer centers first and then the top urological centers. I picked Memorial Sloan for my second opinion because i could and i got the grand poobah of bladder cancer surgery Dr. Harry Herr to do my re-TURB. He saved my life. He got the remaining tumor out and the margins. This gave me some time to research reconstruction. Dr. Herr wanted to do a neobladder on me...i wanted an Indiana Pouch...we parted ways.
I contacted Dr. Mark Schoenberg at Johns Hopkins #1 Uro hospital in the US..he was exceptionally helpful. He threw out names of many doctors specific to the Indiana and female patients. I went to see 7 of them in a 4 week period. They all knew one another. They all had great respect for one another and it was a difficult choice.
Another resource is http://www.castleconnolly.com/
you don't have to subscribe..they will give you top docs in your area of expertise..just not all of them but it gives you a pretty good idea.