Esophageal Cancer Support Group

My uncle is having to make a decision on whether to have the surgery or not.

I was scheduled in 2002 to have the surgery, which would remove the esophagus and attach the stomach to the throat. Sveral people told me that if I had this it would mean that any future reflux could cause a spill over into the lung, causing it to collapse.
I planned on still having the surgery, but they found that I couldn't stay under for that long due to COPD, so the surgery was cancelled.

I had my esophagus and a portion of my stomach removed in June 2005. The cancer was located at the base of the espohagus where it enters the stomach and was at an early stage. According to the doctors, espohagus cancer does not respond well to chemo because there is little blood flow to the esophagus and therefore it will not reach the cancer. They recommend complete removal to ensure they get it all and it does not return. I researched this and that seems to be the general concensus. Personally I wish I had tried ratiation first but I went along with the doctors. If it is in late stage I would say have the operation. They told me if they just remove the area of the cancer it most likely would return in a couple years and be more serious. I did not need chemo after the surgery.
I had the surgery at Hershey Medical Center (Pa) and I must say it was the best care I ever had in a hospital. They did a super job controlling the pain.
The surgery.. They slit your throat and open the abdomen from the rib cage down. I was told they could either form a kind of esophagus but using a portion of the stomach or a section of colon. They used
my stomach so it is now about 1/3rd the size it was. Hospital stay was about 10 days but I had one little complication. The suture at the top did not seal completely and I had to wait for that to heal and close. I was IV fed (pic line)for about 3 months. A special prep feed bag that you were 12 hours a day.
Don't expect to be eating much for the first year.
What to expect.. (my experience) The newly formed esohagus tends to close off and you need balloon dilations to open it up. In my case that was about once a month the first year. Its now been two years and I still need it done about every 3-4 months. When it closes off, food can get stuck in your throat. Fortunately it does not cut off your air but you can not even swallow saliva. If you try to drink to wash it down the drink will come shooting out of your mouth. It has not place to go. You just keep trying to swallow and eventually it works down. It is scary and painful and usually last 15 - 30 minutes. So far I haven't had to go to the ER to have it removed. At the first sign of this I'd go for a dilation.
I have to get B-12 shots every two months because I can no long absorb the vitamin. You have to eat small meals. You stomach is now up in your chest cavity and can not expand as it fills. If you over-eat you may experience "dumping". The undigested food is push from the stomach into the intestines and it has to be digested there. The body draws on the sugar in your body to do this and your blood sugar drops dangerously low. Better get some sugar fast or you may pass out. My first signs that this is happening is I become very hot and sweaty, blurred vision and feeling weak and shaky. After getting the sugar back to a normal level you may be very tired the rest of the day.
Most of the food I eat now is either pressure cooked or made in a crockpot. I experience abdominal pain almost everytime I eat and it can get intense at times. This may last a half hour to over an hour, even with pain medication. If it wasn't for this pain I think I would be functioning pretty nornal now. They have not be able to find the cause of the pain but think it may be scar tissue build up from a colon operation. They thought it might be cause by gall stones so I let them remove the gall bladder a year ago. It did not relieve the pain at all and add diarea to the pain problem every time I eat. That is controlled by medication now. (More meds)I have trouble with steak on the grill and the least problem with seafood. Shrimp goes down pretty good.
If you have any further questions on this topic feel free to contact me.
Hope this helps.

When it was decided that I could not have the operation, I opted to have both chemo and radiation. The chemo was once a week for four months. The radiation was 5 days a week for four or five weeks. Six months after finding the 3 1/2 inch tumor, they could not find even a trace of it. Now, five years later it is still gone. I am not naive enough to believe that it won't eventually resurface somewhere, but the chemo and radiation has given me five extra years. So, I would not ever accept a doctor saying that chemo won't help. I had nothing to lose, and everything to gain.

My husband tumor was 2 cn x 7 cm long at the junction of the stomach they gave him Cisplatin and 5 FU and daily radiation for 5 weeks. He redid all the test no change in the tumor but they spotted another concern on the area of his spine so surgery was cancelled till they could figure out what it was. About 3 weeks later his stomach filled with Acities and he had to have imediate Laprocscopy to drain the fluid and that is when they told me it was filled with cancer cells and that was the end of the line surgery cancelled again and I begged for something so they put him on a new experimential 2 chemo combination never tried together on a human but no luck. He knew and he said I am done he wanted to stop. He told our children his news and I prepared to bring him home on August 6th and we set him up and I slept on the couch near him with a baby monitor listening to each breath he passed away 8 am August 11th I had just came in to talk to him and check his meds and he jerked his heart stopped and black fluid poured out of his mouth. My life was gone at that point but I stayed and took care of him and made sure I was there till the very end when they took him from me. I loved this man with every ounce of my heart and sould he was the greates man I have ever know and I had 33 wonderful years with him. I just can't help wishing he could have had the operation and maybe just maybe lived but they tell me once it goes into Acities and fills the stomach cavities that is the end of the line. So I thnak god that some of the people with this horrible cancer have the chance to live and smile and may god bless and protect you and may you live a long happy life.
Finishline

My husbands esophageal cancer was diagnosed to late although he had been hurting since Novenber of 2006. When he went to our family Dr. He sent him to a heart specialist ran all kinds of test, we found out he had a good heart. Well he was still complaining so our family Dr. put him on Nexium. Well feeling Our family Dr. wasn't helping he said he would go to the VA, he is a vet and went there also. But this was right after Katrina so there was no VA, he was waiting for it to come back up. Well after another month or 2, the nexiums were helping at first I told him he needed to get an endoscopy. Well by this time when we finally found out what was wrong. a tumor. The tumor had ate thru his esphagus, and food was goihg into his lung. More to that story. But I feel if he could have been diagnosed early enough. He would still be here. The treatment for that if they can detect it early enough would have been chemo and radiation, at the same time. You are so blessed yours worked, and many more years to you.

My husband had been going every 6 months for an endoscopy as his identical twin brother had died from this same thing and they felt that some of what his twin had was heriditary. His twin died 10 years ago. He did what they told him and in 2005 he got a frantic call from his doctor that they needed to see him. long story short, the hospital had failed to send the last 2 questionable biopsies to the doctor. He went in for another amd they found a tumor. They assured us it was small and very treatable, he should be fine they said. We were dealing with Kaiser and had several different "opinions" after several months he started a round of chemo and radiation, which was very hard on him. January 06 he had the surgery. they took half of his stomach and the esophagus. He suffered terribley and had many problems with swallowing. After several months of having the esophagus streatched they put in a stint which had to be changed every few months as it kept falling into his stomach. December 06 he lost his voice we assumed he had larangitus .... that was not it tho the tumor had returned and it was inoperable because of where it was located. He did a
another round of a different kind of chemo and then later another round of radiation. He felt better for awhile then the cancer went to his lung. He passed away suddenly on Nov. 20,2007. We had been married for 38 years and we have 5 children and 15 grandchildren ... He will be so missed and I am so alone now. I miss him!

I had my surgery on 15 Jan. 08. I lost 40 lbs. and am struggling w/ keeping above 140. It doesn't seem I'll ever start gaining weight , stamina, etc.. Thanks for sharing your story Bill. Are there any others out there who will share their story? I would like to know where I'm headed, and how long it will take to get there. Thanks.

My father was hospitalized on march 20 for what was thought to be a work related injury - I flew down from Ct to Fl on march 21 where my parents live to be with him and my mother while he recovered,..long story short on March 30 he was diagnosed with stage 4 esophageal cancer to our shock and horror - which spread to his liver and left "spots" on his spine - at first his diagnosis was grim and originally thought he would have just weeks to live - We found an amazing oncologist, with a fantastic bedside manner - treated my father with dignity along with an aggressive chemo plan, various meds etc. He is showing big improvments lately. He will have his second PET scan on monday the 14th to see how the cancer has reacted to his treatment,...our fingers and toes are crossed for good news - Its been long road,..but we are hoping for a miracle -Surgery was never an option as the cancer is located in such a place where it wouldnt do anything, neither was radiation.

I was diagnosed about mid July that I have Barrett's that at some point turned into cancer. I've been getting chemo and radiation for almost 2 weeks. The plan they have me on is a 5-6 week treatment plan and then surgery about 4-6 weeks after that. I just keep trying to count each day, as the treatment passes, to get through it. I (like probably everyone else) like to do what I want in life and when cancer comes, it's easy to feel you're losing control of your life. BUT, I'm hanging in there and taking the journey that God has for me with Jesus along every step of the way for me. I sure do miss eating! In time, that should come back to me though :-) Hang in there anyone with this diagnosis - you are not alone!