Dear Brother Diagnosed - Help

Hitcher13

My brother, age 45, was diagnosed 3 weeks ago and it looks like Stage 3 adenocarcinoma caused by gastric reflux of all things/never a smoker or drinker. It is a very large tumor - 13 cm and may involve 1 or 2 lymph nodes. Surgery - Ivor Lewis is scheduled for Oct 20th, however he is going to the Mayo Clinic in Rochester for a 2nd opinion. We know the surgery there, MIE, is less invasive, with shorter recovery time etc. Our concern is the size of the tumor and the chance with laproscopic surgery that the lymph nodes may be missed. The surgeon tells us here, that he will be looking at everything and taking out every lymph node that looks suspicious - and he feels that can't always be done with the MIE. We are very confused - the the Mayo Clinic may not even say they can do the surgery. Has anyone had such a large tumor and several lymph nodes removed through the MIE - we don't want him having to go through a 2nd surgery if something is missed. This is terrifying for all of us. I was diagnosed with Stage 1, Uterine Cancer at age 39, and I am now 8 years cancer free. My brother's is much more serious and I pray that he too will beat this Cancer. Any advice would help...thank you so much!

Cora11

some names
If you are in the midwest, I would encourage you to get an opinion from Tracey Weigel at UW Madison. She is another of the pioneers in this surgery as she was a fellow with Luketich. who is the big guy at Pittsburgh. YOu could possibly talk with Chuck who works with Luketich. We were able to talk directly on the phone with Weigel the other day and we really liked her. She might tell you over the phone if she thinks she has enough info to base a conclusion. Also, is your brother starting chemo/rads?
Cora

JimboC

Has there been any
Has there been any discussion of chemotherapy or radiation? I would always recommend a second opinion especially when there is a rush to surgery. There has been much discussion here about surgery without pre op measures to shrink the tumor. When I was first diagnosed with an 8 cm tumor in February of this year, I tried to get the surgeon to book an OR and get it out of me. We ended up doing three rounds of chemo which shrunk the tumor down to .5 cm when it was removed in July. I understand believe me how much he probably wants to get it out but that may not represent his best chance for survival. Please post any questions you might have.

Bobs1wife

Mayo, Rochester
Hello, My husband had a second opinion at Mayo, Rochester. He had chemo and radiation at our home town hospital, and then surgery at Mayo. His surgery was done there on Aug 16,2010 by Dr. Wigle. Originally staged at T3N1M0, and staging at surgery was T2N1M0. At the time there were 6 thorasic surgeons and Dr. Wigle was the only one who does the MIE. I have read studies that were completed re: open surgery vs. MIE, and if the MIE is an option there was no reason to not go with it. Dr. Wigle actually does the robotic MIE. They are able to reach lymph nodes and the robot allows long surgeries with great precision as it eliminates shaking and fatigue movements. My husband had 27 lymph nodes removed and 1 came back from pathology with scattered cells so he had 3 more rounds of follow up chemo. My understanding is that the doctors do the type of surgery that they have trained for. We had a very good experience at Mayo. Great care and doctors. Bob's sugery was on a Monday and he was released on Friday. Now this is the ultimate in release time and it doesn't always go that way. He simply had no big issues after surgery and never went to ICU, just to the hospital's regular thorasic floor. The few issues that came up were dealt with promply and resolved very quickly. CT scan at 1 year since surgery was NED. I am also wondering about chemo for your brother, but if you get a second opinion I'm sure it will include an over all plan and just not surgery. Please do get a second opinion, you want to be well informed to make the best choices. Linda

preacherchad

Sorry
I am sorry that your family is facing this battle. I know how confusing all the information out there can be. As most here, I talked to many survivors, surgeons etc. As I talked to many MIE surgeons, all of them told me the same thing, " MIE is for very low risk patients and we can not gurantee we will get all the lymph nodes involved". When I talked to Ivor Lewis surgeons, they told me this "Many times I can feel lymph nodes and tell there is something wrong when test and eyes do not see it". That is the reason I chose the Ivor Lewis, March 28, 2011. I had a quick recovery after surgery, no, I am no beach beauty with scars, but I am here and healty and that is what matters.
The most important issue is, regardless of which surgery you choose, you must have a certain comfort level with your surgeon.
I will be praying for you and your brother. Look to God for guidance in all your decisions.

chad

rose20

Sorry to hear of your brother...
How wonderful that you are an 8 year cancer survivor, that brings much hope I'm sure to your brother. I do pray you get the answers you are looking for. I cannot offer any advice on surgeries but I can offer my prayers to you and your brother.
You have come to the right place here. So many are so knowledgeable. You can say, "they've been there and done that."
You will find much needed information here and much support and sincere compassion.
May God lead you in the right decisions.

GerryS

Surgery at Mayo..........
I had my surgery at Mayo, MN in March 2010. I had the Ivor Lewis done by Dr DeChamps. One node was removed. I had 2 rounds of chemo after surgery. I had no chemo prior to surgery. I was Stage II. I am going on 19 months NED . The surgery/chemo is a tough recovery. About 6 months. I am doing well now and eating almost anything. Best of luck to you and your family and I will include you in my daily prayers.

Gerry Age 59

TerryV

After going through this with my husband....
PreSurgery radiation and chemo were done for Nick with the intent to "kill" the cancer cells and to shrink or better yet, destroy the tumor before surgery. This lessened the opportunity for any living cancer cells to be still be around to "move" following surgery.

Surgery will absolutely "get" the diseased portion of the esophagus. I was surprised at how little of his original esophagus my Nick kept. And I believe that's the norm for EC surgical patients, not the exception.

As others say, do get a 2nd option. Mayo would be a good place to obtain that. Having a surgery date without having presurgery radiation/chemo is surprising to me.

EDIT: Just saw GerryS' note. A Stage II would have the possibility of "different rules" than a later stage EC.

Best wishes and "welcome" to our support group.

Terry
Wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11

jim2011

Esophageal surgery
First of all...being a candidate for surgery is a good thing. I was really scared and even questioned whether or not I even needed surgery as the chemo and radiation shrunk the tumor to something that didn't even register. The doctors told me that I certainly did win a battle but if I wanted to win the war then the surgery was next. My vote is MIE but every situation is different. Mayo doctors are really good on a worldwide scale.
There are examples of both types of surgery on youtube. VERY graphic but informative. Amazing what the surgeons can see. They even point out the little nodes. I think that they must inflate the cavities with air to get the room to see and manuver. Dont go there if you are not prepared to see everything! My spelling sucks because I have gotten spoiled by word perfect software and having my texts finish my words. lol
Jim

Hitcher13

Thank you
First of all...thank you so much to all of you for your advice and prayers...it means so much to me and my family. I will be adding you and your loved ones to my prayers as well.

My brother is willing to go anywhere to receive the best treatment possible. While we have an excellent surgeon with a great reputation, we believe in getting second opinions and making an informed decision. I am surprised by the comments I have read, and wonder why chemo or radiation has not been offered to shrink the tumor. I also wonder if the issue is that the treatment would leave him in quite a weakened state going in to surgery. I am somewhat anxious to see what kind of treatment/surgery the Mayo Clinic will recommend. My brother and his wife left today to head to Rochester. His surgery here is scheduled for Oct 20th - so not much time to make such major decisions. If they decide to do surgery at the Mayo Clinic, then the rest of our family will be following close behind.

I have found this board to be very encouraging and thank you all for devoting your time to helping others deal with a very difficult time in our lives.

Stay strong.....