New Member - 8 year survivor

NGC1514

Greetings to all having to deal with this dreadful disease.

Briefly... I was diagnosed with esophageal cancer in October, 2000. Had chemo, radiation and, finally, surgery (Ivor Lewis) in April, 2001. Staging was Stage IIb with suspected lymph node involvement, but downstaged to IIa when the nodes showed clear after the post-op path studies were complete.

Had a couple bumps in the road to recovery, but, today, more than 8 years since diagnosis, I can say life is good.

Should you care to read the whole story, you can find it, along with other stuff at: http://ngc1514.com/ECG.

We have a small EC support group in the Atlanta area. We try to get together every month or two for lunch and we host a picnic each October.

If I may be of any help or provide any information (non-medical... you need to get medical advice from your doctors and not reading an Internet forum!), please let me know.

Eric Greene

judyloo

Hey New Member
Eric - Was surprised and pleased to see a new posting! EC does not get alot of promotion here; funny because its one of the fasting rising cancers for white, middle age men! My husband was Stage2a-2b; have not seen the staging form but the Tumor was T3 and all the scans seem to indicate N0. Steve was DX last Dec so his anniversary is here and he went through the same regimen as you did; up front chemo/rt then the surgery - I never realized how HUGE that was going to be. 10 days recuperating in the hospital almost unheard of these days but since the surgery itself carries a mortality rate I was glad he was being monitored. Steve in now experiencing one of the "bumps" along the way - he has a stricture at the anastamosis site in the esophagus that just does not want to stay as open as it should. We have to travel a ways to see his surgeon to get it dialated - guess the longest hes gone without intervention was 5-6 weeks. it is a real PIA! Did you have any problems with that? One other biggie is the reflux - mainly at night (and we had the bed raised way up). This may be with him along time and perhaps he needs to tweak his diet/or eating habits - you must have gone through a bout of that. I wish we had a similar support group here for S there are times he really needs to talk to someone who has literally walked in his shoes! EC gets little press so its hard to find alot of current info much less folks that are in the same boat.

What is really great, however, is you are 8 years out; I dread the scans each time fearing the worst and hoping for the best. You have given me something to "hang on to"; you are past the 5 year mark! I have to agree that as frustrating as things get, yes life is good, I still have my husband something last year I did not think would happen. I'm going to share your posting with Steve - hes reluctant to post but you might be a catalyst for him to open up since you have survived through all the hard times.

Thanks Eric.

Judy

NGC1514

judyloo said:

Hey New Member
Eric - Was surprised and pleased to see a new posting! EC does not get alot of promotion here; funny because its one of the fasting rising cancers for white, middle age men! My husband was Stage2a-2b; have not seen the staging form but the Tumor was T3 and all the scans seem to indicate N0. Steve was DX last Dec so his anniversary is here and he went through the same regimen as you did; up front chemo/rt then the surgery - I never realized how HUGE that was going to be. 10 days recuperating in the hospital almost unheard of these days but since the surgery itself carries a mortality rate I was glad he was being monitored. Steve in now experiencing one of the "bumps" along the way - he has a stricture at the anastamosis site in the esophagus that just does not want to stay as open as it should. We have to travel a ways to see his surgeon to get it dialated - guess the longest hes gone without intervention was 5-6 weeks. it is a real PIA! Did you have any problems with that? One other biggie is the reflux - mainly at night (and we had the bed raised way up). This may be with him along time and perhaps he needs to tweak his diet/or eating habits - you must have gone through a bout of that. I wish we had a similar support group here for S there are times he really needs to talk to someone who has literally walked in his shoes! EC gets little press so its hard to find alot of current info much less folks that are in the same boat.

What is really great, however, is you are 8 years out; I dread the scans each time fearing the worst and hoping for the best. You have given me something to "hang on to"; you are past the 5 year mark! I have to agree that as frustrating as things get, yes life is good, I still have my husband something last year I did not think would happen. I'm going to share your posting with Steve - hes reluctant to post but you might be a catalyst for him to open up since you have survived through all the hard times.

Thanks Eric.

Judy

Post Op
Judy,

Sounds like Steve's doing about par for the course in his post op recovery. There are lots of bumps in the road and dilations are pretty common. I was fortunate and never had any problems requiring dilation. I suspect a lot has to do with the surgeon's technique - none of the people who have been to the surgeon I saw have needed dilations.

Reflux, alas, is a fact of life. The valve at the gastric-esophageal junction is gone and gravity is the only thing that holds the stomach gunk down. It's my understanding that the vagus nerve is cut during surgery and one of the functions of this nerve is acid production. After surgery, most of the reflux is bile rather than acid, so the normal antacids and proton pump inhibitors don't do much to help. Went for a year after surgery without any reflux and thought it was cured. Almost a year to the day after surgery, I had reflux from hell. Aspirated the stuff down into the lungs, spent several days coughing it back up, chemical bronchitis.. it was awful. Have had reflux ever since and very little helps. I sleep with the head of the bed elevated, take an antacid before bed... but still suffer occasional bouts with the stuff.

If Steve would like to talk, he's more than welcome to give me a call. If you'd get in touch via email, we can exchange telephone numbers. My email is eric@ngc1514.com.

Eric