new to this

sammy123

Hello everyone. My husband is newly diagnosed esophageal cancer. He just recently had endoscopic ultrasound. According to physician, he staged it at T2 with no node involvement. Final pathology pending though. I have been reading and reading and reading all of the posts here and honor Mr. Marshall's expertise and relentless advice to others. I took his advice and called Dr. Luketid's office and have sent everything to Chuck for review. I'm just a little anxious, okay a whole lot anxious, we have a relationship with Johns Hopkins but I understand they do not offer minimally invasive surgery there. How can we be sure they will get it all with Minimal vs. old way. I am surprised by that because on their web site it states that Dr. Meneshean is an expert at Esophageal Ca and also minimally invasive surgery. If anyone could give advise. We practically live next door to Hopkins but will go to Pittsburgh. Thank you very very much. This is a start.

Unknown

This comment has been removed by the Moderator

DanaM

unknown said:

This comment has been removed by the Moderator

Welcome also neighbor..
I am also on my way out of the door, but in short, my husband was also recently diagnosed with EC. We are Maryland residents and on our way to Pittsburgh on April 27. (See my post re: If anyone has an option to go to Pittsburgh...) Welcome, you are definately not alone and this site has been a Godsend for us. I will write more when I get home from church. I'm also glad you stopped in. Talk to you soon.
Dana.

Susie_Brendon

Welcome
Hi Sammy -
Just wanted to say welcome to our site even if its because of unfornuanate reasons. You will be very happy here. My husband is T3N1M0 and just completed his treatments last week. We are scheduled for surgery with Dr. Luketich on May 27th. Looking forward to completing the next step of kicking this beast in the behind. You will see that so many people on this site will offer you kind words, laughs, and support. I wouldn't want my husband to have anything other than than MIE and neither should you!!! Good luck and I'm sure we will be in touch.

Prayers going out your way.
Susie

DanaM

Hey Sammy..
Good Morning..
I actually wrote a novel to you this morning after I hit my car into the parking lot thingy where you wave a card to get into the lot... The novel dissappeard when I hit the preview button. I guess that's a good thing for you.:) A friend of mine who posts here, her husband is sick and I'm waiting to hear back from her. Back what seems like many years ago, when its only been months, I had what I described then as "bad days" when this wasn't on my plate and I took those days so much for granted...God forgive me for that.

I hope somebody is laughing here..I told a guy who works for me that I hit the card reader and he was laughing...I'm like what are you laughing at? I'm stressed, been sleeping badly,damaged my car-what is so funny? but realized when I said it, I was laughing too...jeez, the audacity of some people. lolol. But I'm learning to laugh, to find humor in the most despicable of situations. Since he works for me and thought it all funny, I told him to go make a damage assessment on his lunch break, because I wouldn't look at it, and find some wax if its fixable and get to work. (Good thing we're friends)lolol.

Now that I'm done sharing my miniscule bumps, I will tell you that I was afraid of going to Pittsburgh and my husband was very resistant to it, I'm assuming, you both are too for the same reasons that we were. We already had the Division Chief of U of M waiting our table. He skimmed over the part that some people are doing this with tools and a laproscope and said he favored handling the organs manually. As far as "seeing" I could be wrong, but they use more than one camera and are aware that the adjacent organs and lymph nodes need to be checked.

I've seen pictures from a laprocopic procedure, I know that the cameras are powerful and capable of taking pictures that are high quality. If you've done the research, you know that the doctor who does the most, combined with an institution that does alot of esophagectomies, have the best survival rates, as these procedures go.. Dr. Luketich has a publication where he compares the two surgeries-MIE to open thoracic types and found no difference as it relates to surviving the cancer but found differences in survival rates as they relate to the procedure. I think overall the morbidity rate is 3% with open thoracic surgeries vs 1% with the minimally invasive type. In addition, quality of life overall was greater with MIE patients. It's no wonder. Half of this thing is a psychological battle, and the mind has a tendency to follow the body. If you're not feeling good or have a long recovery ahead of you, I don't think anyone would dispute that this will have an effect on the mind and attitude. I sure don't need any more challenges than I already have. I've had a bad head cold at work and have been more than grouchy on occasion because of something so silly.

I was afraid to go too, my support network is here. My dad isn't well and couldn't make the trip to Pittsburgh and I didn't want my mom leaving him to go with us, as she wanted to do. And that's the extent of our family.

But I was more afraid not to go. I knew deep down that it was the right thing to do. Scary? Yes. Inconveniant? Yes. Stepping way outside of our comfort zone? Yes. My husband has had issues dealing with this whole thing, as I have had as well. Everything he goes through, I go through. As my other mom says, the head doesn't go anywhere without the neck. And that's how me and my husband are.

But we're going. I'll stay there as long as I have to. And by God, we're gonna get through this. I really need to focus on how I am blessed, that we were accepted as patients in Pittsburgh, that we're only 5 hours away. (Many folks here in this forum are driving further or flying to get there) and that I have savings to afford the stay in Pittsburgh. Family housing can be obtained near the hospital from 40 dollars to 60 dollars a night there. Yes, we are blessed-we've both been hit by a truck, but Glory be to God, we're headed to shock trauma (so to speak.)

I'm with you, everyone here on this site is with you. I may be fortunate enough to personally meet at least 3 people whose stories are posted in these forums when I go to Pittsburgh. It will be like meeting family. It's only 5 hours away. 2 more hours than driving downyocean. (OC) I live where you do, was 20 minutes from U of M, my support system in place here, scared, afraid, high-anxiety..but I'm going. I'm sure that my other dad will be contacting or posting something for you real soon that will answer better some of the questions that you have about "seeing" inside. But like he asked my husband when he wanted to stay and go to the U of M, "Son, Why would you want to do that to yourself?" We didn't have a good answer... In short, I don't want him to suffer physically, any more than he has to. It's alot to deal with, changing the way you eat and finding out sometimes the hard way, what doesn't work... I don't need an overly extensive physical healing period to deal with. Our doc in MD said, "He should be feeling himself in about 3 months..." 3 months? Mr. Marshall was shopping on day 8, I believe. Wrap it up, Dr. Luketich, I'll take it...

At least one person who posts in this forum had to go into a rehab facility after surgery of the open thoracic type and was so weak. If you're like me and know that half of this again is phsychological, minimize the physiological effects the best you can.

You are never, never, alone. We're all here for you. Post any question, feeling, or rant, and you will find a phethora of folks who have been there and done that, both the t-shirt, cut the sleeves off and tyedyed it and are with you even if they haven't and will continue to be.
God Bless you and your husband. I'll be praying for you both.
Dana

Susie_Brendon

DanaM said:

Hey Sammy..
Good Morning..
I actually wrote a novel to you this morning after I hit my car into the parking lot thingy where you wave a card to get into the lot... The novel dissappeard when I hit the preview button. I guess that's a good thing for you.:) A friend of mine who posts here, her husband is sick and I'm waiting to hear back from her. Back what seems like many years ago, when its only been months, I had what I described then as "bad days" when this wasn't on my plate and I took those days so much for granted...God forgive me for that.

I hope somebody is laughing here..I told a guy who works for me that I hit the card reader and he was laughing...I'm like what are you laughing at? I'm stressed, been sleeping badly,damaged my car-what is so funny? but realized when I said it, I was laughing too...jeez, the audacity of some people. lolol. But I'm learning to laugh, to find humor in the most despicable of situations. Since he works for me and thought it all funny, I told him to go make a damage assessment on his lunch break, because I wouldn't look at it, and find some wax if its fixable and get to work. (Good thing we're friends)lolol.

Now that I'm done sharing my miniscule bumps, I will tell you that I was afraid of going to Pittsburgh and my husband was very resistant to it, I'm assuming, you both are too for the same reasons that we were. We already had the Division Chief of U of M waiting our table. He skimmed over the part that some people are doing this with tools and a laproscope and said he favored handling the organs manually. As far as "seeing" I could be wrong, but they use more than one camera and are aware that the adjacent organs and lymph nodes need to be checked.

I've seen pictures from a laprocopic procedure, I know that the cameras are powerful and capable of taking pictures that are high quality. If you've done the research, you know that the doctor who does the most, combined with an institution that does alot of esophagectomies, have the best survival rates, as these procedures go.. Dr. Luketich has a publication where he compares the two surgeries-MIE to open thoracic types and found no difference as it relates to surviving the cancer but found differences in survival rates as they relate to the procedure. I think overall the morbidity rate is 3% with open thoracic surgeries vs 1% with the minimally invasive type. In addition, quality of life overall was greater with MIE patients. It's no wonder. Half of this thing is a psychological battle, and the mind has a tendency to follow the body. If you're not feeling good or have a long recovery ahead of you, I don't think anyone would dispute that this will have an effect on the mind and attitude. I sure don't need any more challenges than I already have. I've had a bad head cold at work and have been more than grouchy on occasion because of something so silly.

I was afraid to go too, my support network is here. My dad isn't well and couldn't make the trip to Pittsburgh and I didn't want my mom leaving him to go with us, as she wanted to do. And that's the extent of our family.

But I was more afraid not to go. I knew deep down that it was the right thing to do. Scary? Yes. Inconveniant? Yes. Stepping way outside of our comfort zone? Yes. My husband has had issues dealing with this whole thing, as I have had as well. Everything he goes through, I go through. As my other mom says, the head doesn't go anywhere without the neck. And that's how me and my husband are.

But we're going. I'll stay there as long as I have to. And by God, we're gonna get through this. I really need to focus on how I am blessed, that we were accepted as patients in Pittsburgh, that we're only 5 hours away. (Many folks here in this forum are driving further or flying to get there) and that I have savings to afford the stay in Pittsburgh. Family housing can be obtained near the hospital from 40 dollars to 60 dollars a night there. Yes, we are blessed-we've both been hit by a truck, but Glory be to God, we're headed to shock trauma (so to speak.)

I'm with you, everyone here on this site is with you. I may be fortunate enough to personally meet at least 3 people whose stories are posted in these forums when I go to Pittsburgh. It will be like meeting family. It's only 5 hours away. 2 more hours than driving downyocean. (OC) I live where you do, was 20 minutes from U of M, my support system in place here, scared, afraid, high-anxiety..but I'm going. I'm sure that my other dad will be contacting or posting something for you real soon that will answer better some of the questions that you have about "seeing" inside. But like he asked my husband when he wanted to stay and go to the U of M, "Son, Why would you want to do that to yourself?" We didn't have a good answer... In short, I don't want him to suffer physically, any more than he has to. It's alot to deal with, changing the way you eat and finding out sometimes the hard way, what doesn't work... I don't need an overly extensive physical healing period to deal with. Our doc in MD said, "He should be feeling himself in about 3 months..." 3 months? Mr. Marshall was shopping on day 8, I believe. Wrap it up, Dr. Luketich, I'll take it...

At least one person who posts in this forum had to go into a rehab facility after surgery of the open thoracic type and was so weak. If you're like me and know that half of this again is phsychological, minimize the physiological effects the best you can.

You are never, never, alone. We're all here for you. Post any question, feeling, or rant, and you will find a phethora of folks who have been there and done that, both the t-shirt, cut the sleeves off and tyedyed it and are with you even if they haven't and will continue to be.
God Bless you and your husband. I'll be praying for you both.
Dana

I second everything Dana said...
It's that simple. She speaks the truth.

My husband and I will be flying to Dr. Luketich in May. We are over 12 hours away (15 if you count the 3 hours to the airport)... but to put my husband in the hands of the best surgeon in the US when it comes to MIE..you betcha... We are takin' the trip. It's our lives here at stake...Why go anywhere but the best???

I will be praying for you and your husband.
Cyber hugs to you -
Susie

sammy123

Susie_Brendon said:

I second everything Dana said...
It's that simple. She speaks the truth.

My husband and I will be flying to Dr. Luketich in May. We are over 12 hours away (15 if you count the 3 hours to the airport)... but to put my husband in the hands of the best surgeon in the US when it comes to MIE..you betcha... We are takin' the trip. It's our lives here at stake...Why go anywhere but the best???

I will be praying for you and your husband.
Cyber hugs to you -
Susie

Dr. Steven Hochwald, Shands,
Dr. Steven Hochwald, Shands, Gainesville.
Dr. Luketich, Pittsburgh

Hello everyone and many thank you's to each and every one of you for taking the time out of your busy lives to answer questions. I also send many thank you's to Mr. and Mrs. Marshall (Bill) for spending time with my husband on the phone. He is super anxious and you helped him immensely. I was evesdropping but didn't join in because I thought it best that he hear from such a wonderful resource without me "chiming' in as I usually do!!! We are in the holding pattern with Pittsburgh (Dr. Luketich/Chuck), they now have all of our paperwork and we are awaiting a date. We also have a 2nd opinion along with a pet scan lined up with Dr. Steven Hochwald (Shands, Gainesville) who also does the procedure. My big question now is that Dr. Hochwald's standard protocol before the MIE for anyone higher than a T1 (my husband is a T2) is chemo and/or radiation. Has anyone done that??? Again, thank you so much, as we all know none of us ever want to be part of a club like this but when we are we feel so lucky and fortunate to hold membership to such elite people. xox

Susie_Brendon

sammy123 said:

Dr. Steven Hochwald, Shands,
Dr. Steven Hochwald, Shands, Gainesville.
Dr. Luketich, Pittsburgh

Hello everyone and many thank you's to each and every one of you for taking the time out of your busy lives to answer questions. I also send many thank you's to Mr. and Mrs. Marshall (Bill) for spending time with my husband on the phone. He is super anxious and you helped him immensely. I was evesdropping but didn't join in because I thought it best that he hear from such a wonderful resource without me "chiming' in as I usually do!!! We are in the holding pattern with Pittsburgh (Dr. Luketich/Chuck), they now have all of our paperwork and we are awaiting a date. We also have a 2nd opinion along with a pet scan lined up with Dr. Steven Hochwald (Shands, Gainesville) who also does the procedure. My big question now is that Dr. Hochwald's standard protocol before the MIE for anyone higher than a T1 (my husband is a T2) is chemo and/or radiation. Has anyone done that??? Again, thank you so much, as we all know none of us ever want to be part of a club like this but when we are we feel so lucky and fortunate to hold membership to such elite people. xox

ALL THREE TREATMENTS!!!
YES YES YES!!! You do want your husband to have chemo, radiation and then surgery!! This type of cancer is a sneaky creepy bug. The cancer can jump to any other part of your body in a matter of time. Even though the scans show no node involvement, the cancer cells can be sooo very tiny yet that they are not showing up on scans. If your husband only has surgery, those cells are still present and can come back with a vengence. You will definetly want your husband to have chemo prior to surgery. I have heard that all 3 treatments will give your hubby the best chance of beating this nasty bug!

William knows best... I'm sure he will reply with the same final answer....maybe said a little more professional and I'm sure with links to websites for you to review. He is so thorough! It's wonderful!!

I will keep you and your husband in my prayers. My vote: Dr. Luketich....I will confirm again after my husband's surgery on May 27th. :-)

Susie

BMGky

I vote for all three
Very important to have all three. Also, if your post chemo/radiation PET scan prior to surgery shows no cancer cells, Still go for the surgery. My husband did the chemo/rad and had a clear PET scan post treatment. The doctor say we operate anyway. The biopsy of the removed esophagus found live cancer cells underneath scar tissue hidden from PET scan. The oncologist said, "That's the reason you do the surgery." My husband had the invasive Ivor Lewis. Even though a challenging surgery for someone 70 years of age, he did fine. He continues to work everyday, has had good scans since the surgery. Learning to eat small meals is hard for him as he was 6'3" and 260 pounds prior to treatment. He is now a trim 190, has an all new wardrobe, regaining his strength and happy to be alive. Three people hard to be around: a reformed drunk, someone who has quit smoking, and someone who has lost weight to a pre-college level. Here I am trying to get him to eat more (which he needs) and having food on hand and hearing him encourage me to lose weight while saying you order something, and I'll just take a bite.......... It's all good. He had to have a jtube during treatment which became a best friend. Had lots of dehydration and issues but his cancer team did a great job. You're lucky to get to do the MIE and go to Pittsburgh. If fate prevents you from being able to go there, Shands is a highly ranked cancer center. If you have a good cancer team, they can do great work. My husband went to a small, private clinic and we have been exceedingly pleased with its standard of care. Oh, yes, it takes a good six months to get back on your feet if you have the IL; however, it is worth it. Just wanted you to know in case your optimum plans fall through. Good luck.