Does It Matter? Hospital Question

Does it matter which hospital you have surgery at?  Or does the Dr matter more and how do you know you have the best?

 

Right now my hubby is Stage 3 Rectal Cancer and taking Xeloda 7 days a week, has radiation 5 days a week and goes in every 2 weeks for an IV infusion of Oxciliplantin for a total of 3 infusions, he will be wrapping up the pre-op treatments mid April and we are currently having treatment at U of M.  We are a little concerned about the surgery.  Not that the surgeon at U of M has given us anything to worry about but we we know that she does most of her surgery's on colitis and chrohn's patients.  We even have a close friend she has operatoed on and he was extremely pleased with his outcome but we have been contemplating visiting Mayo Clinic or Cleveland Clinic because they rated at the top.  Are we crazy to spend $5,000-$10,000 out of pocket to go to Mayo?  Is it any better than U of M that is rated in the top 15 and our insurance will cover it 100%?   Or are we crazy not to?  Has anyone been to Mayo and had the radiation treatment during surgery?  We are torn and if anyone has an opinion on this, please we will listen and if you have had a surgeon at Mayo or Cleveland that you would highly recommend or not recommend, we would love to hear that too.  Thanks.

One more thing, my husband is 32 and his cancer is 3/4" from the muscle that controls bowel function and is 3 inches long and is in 3 lymph nodes, the surgeon at U of M gave us a 95% chance of having a permanent colostomy after treatment.  Thanks for taking the time to read this.

I don't know if you've made your decision, but I'm typing you from my bed at Mayo Clinic Rochester. I had three opinions but Dr. Heidi Nelson is recognized as the best colorectal surgeon in the country and I wanted the best. Cleveland Clinic is awesome too, but I'll share some first hand experience at Mayo. The doctors only tell you the facts and don't make any predictions until they run some pretty thorough tests. They will talk to you as long as you want or need. The place is absolutely beautiful so you feel good being there and they run everything like a well oiled machine. You never wait more than five minutes for your appointments but yet they never forget you're scared, overwhelmed person trying to figure what to do. I did my chemo and radiation back in Fl, came up to Rochester for surgery and then went back for more chemo. I just had the reversal of my ileostomy. The nurses here are wonderful! I'm a T3, N1 with two posiitve lymph nodes and I was diagnosed at 38 years old. You'll know the right thing to do but don't let money stop you. There are grants and foundations out there that can possibly help you. Good Luck! ----quote------ On 3/19/2007 Bmxspeedqueen wrote: Does it matter which hospital you have surgery at?  Or does the Dr matter more and how do you know you have the best? Right now my hubby is Stage 3 Rectal Cancer and taking Xeloda 7 days a week, has radiation 5 days a week and goes in every 2 weeks for an IV infusion of Oxciliplantin for a total of 3 infusions, he will be wrapping up the pre-op treatments mid April and we are currently having treatment at U of M.  We are a little concerned about the surgery.  Not that the surgeon at U of M has given us anything to worry about but we we know that she does most of her surgery's on colitis and chrohn's patients.  We even have a close friend she has operatoed on and he was extremely pleased with his outcome but we have been contemplating visiting Mayo Clinic or Cleveland Clinic because they rated at the top.  Are we crazy to spend $5,000-$10,000 out of pocket to go to Mayo?  Is it any better than U of M that is rated in the top 15 and our insurance will cover it 100%?   Or are we crazy not to?  Has anyone been to Mayo and had the radiation treatment during surgery?  We are torn and if anyone has an opinion on this, please we will listen and if you have had a surgeon at Mayo or Cleveland that you would highly recommend or not recommend, we would love to hear that too.  Thanks. -----end quote------

If you dont mind me asking, how far from the anus was your tumor at diagnosis?  My hubby has the same staging as you do, how much did it shrink prior to surgery, how long did you have the bag before the reversal?  How long has it been since your 1st surgery?  What is your prognosis now?  Thanks for all the info.

 

Melanie 

 

On 4/12/2007 Bmxspeedqueen wrote:

If you dont mind me asking, how far from the anus was your tumor at diagnosis?  My hubby has the same staging as you do, how much did it shrink prior to surgery, how long did you have the bag before the reversal?  How long has it been since your 1st surgery?  What is your prognosis now?  Thanks for all the info.

 

Melanie 

Please keep in touch and let me know how it goes.  My hubby is approx 4 weeks from surgery.  Waiting for the appeal to M-Care to go to Mayo.  Running out of time, our consult is scheduled for April 24-27 but still no answer for the insurance company. =(

 

Melanie 

 

I'm hoping your consult went well. I'm back home and have been living in the bathroom! They said the first two weeks after the take down would be the toughest and they are right. However, it does get better each day.

My tumor was 6.5 cm up and 6cm so I have less than  2 cm of rectum left. Dr. Nelson takes on the cases that no one else will touch or say is impossible so I hope you had the chance to meet her.

I did 5.5 weeks of daily chemo and radiation, five weeks off, surgery to re-section the colon/rectum, five weeks of recovery (six total) and started chemo (FOLFOX) which lasted 4.5 months going every other week. At four weeks post chemo, I went back to Mayo and had my reversal.

 They were also right the surgery itself is far easier than the first one but it took my colon and small intestine a long time to "wake up" and it wasn't happy! It is frustrating because on one hand you feel better, but you feel tied to the bathroom. At 39, I never thought I would be an expert on Depends! However, this won't last forever either.

I go to Mayo Jacksonville  (FL) which is near me for my follow up scans in July.

I hope everything works out with your husband. I'm still fighting with my insurance company! One day a time and remember we have an amazing capacity to survive and hold positive thoughts.

I'll send some positive thoughts your way!

 

 

You say you are fighting with your insurance company, my hubby was turned down and then turned down on appeal to go to Mayo.  I still wanted to fight to go but he said to just schedule the surgery at the University of Michigan so he could move on.  Did you go though they turned you down or is another scenario?  I am not sure how far the tumor is up but very close to the muscle, the odds were not good.  Right now I am just hoping that they get it all, my hubby says he doesnt care if he has a colostomy the rest of his life and he's only 32.  I want only what he wants and I want him here.  How long are they telling you that you will be wearing the depends?  I too know all too well about depends.  After the birth of our first child, my bladder completely quit working and I was using 8-10 a day for 4 months.  Talk about expensive!!!.  I wish you the best and thanks so much for all the info.