Esophageal Cancer Surgery

Wishing you the very best of results from your surgery. I am sure your doctor has told you that you are very fortunate to have been diagnosed at such an early stage. Hopefully your surgical pathology will be clear and no follow up chemotherapy will be required. Recovery from surgery does take some time but life goes on. I am now almost 7 years out from surgery and enjoying life.

 Best Regards,

Paul Adams

McCormick, South Carolina
 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Six Year Survivor

twristen said:

My father just went thru surgery
My father had stage 2 and started with Chemo and radiation. After a petscan they determined the cancer was dead, but the surgery still needed to take place. The went thru the stomach and the side of his neck to remove most of the esophagus and to form the stomach into a tube and attach it to the remaining piece of the esophagus in the neck. He is really nervous about the life changes. For about 4-5 weeks he will be fed thru a feeding tube. Is there anyone he can talk to that has gone thru a similar situation? He would like to be able to talk to someone to find out what life is like after sugery. Please let me know. Thanks

Read my webpage of my battle with the cancer: http://thetanseys.webs.com/Cancer Update.htm Cancer updates from jy FB page with pictures and anecdotes about my life.

szaboe said:

Hello
Hello Katanna:

I just recently joined this site after my brother was recently diagnosed with stage 1V esophageal cancer. He just finished his radiation treatments and his second chemo therapy.
He has a JGpeg tube and still can not really eat, has pain still at the esophagus tumor site. If you have time and you are still on this site, I would really appreciate your input and if possible your treatment and where you had gone, if possible\
Thank you for sharing your experiences with me and the people on this site whom I am sure have benefitted immensely


Eileen

Hoping your brother is a survivor? Here is my story about my 2 year battle with Cancer:  http://thetanseys.webs.com/Cancer Update.htm

cyn0418 said:

stage IV EC
Katanna, I was just browsing and noticed you have survived stage IV EC. Had it gone to your nodes or to other organs? My husband was dx'd in February 2008. They said since he was stage IV that he couldn't have radiation or surgery. He has had excellent response to chemo - Oxaliplatin, Taxotere and 5FU (5FU 46 hours infusion at home every 2 weeks). Had an endo last week and doc said no cancer in esophagus and 90% gone from stomach. He said he sees just a little bit at the top of his stomach. We are elated. Still worried though. When he asked his onc at diagnosis if he has 5 years, she said maybe half that. I was just wondering what was your situation, because I am so encouraged by the fact that you were stage IV and still her after 5 years. We pray for that. I would be interested if you wouldn't mind explaining your situation to me in an email. My email is cyn0418@aol.com. By the way, my husband just turned 59 years old and healthy as an ox prior to diagnosis. He is still pretty fit and works outside (though he is retired) doing paver stone landscaping at our house every day since July. Very active!!! Thanks in advance for your input. By the way, he was diagnosed stage IV on PET scan with retroperitoneal nodes and supraclavicular nodes involvement only - no other organ involvement.

Cyndi

Please  forward your comments to me also. I need all the  help  I can  get. 

Uncle_Mike said:

I have just finished 3 weeks

I have just finished 3 weeks of intense Chemo & Radiation. I am now trying to heal before surgery, but my stage 4 esophageal & stomach cancer is pretty  advanced. The way the surgery  was described  by the  surgeon is to totally remove the esophagus & the top 1/3 of my stomach and then use the rest of my stomach/large intestines to make a new esophagus. This  seems  very desperate with many potential disasters. The last 6 weeks have been pure torture. What is your quality of life like? What are your limits and pain level like? What can you eat? How do you sleep? As you can tell I am a little nervous. Your feedback is greatly appreciated. 

Dear Mike:

You are not likely to get responses on the discussion link that you have written 3X on today.  It is actually 10 years old, and only one has written in the last year.  That would be “tanseyj”.  So I’ve taken the liberty of putting your post on a “new topic forum” here and given you several references which should be helpful.  There are several stage IV EC patients who write regularly, but they are not posting at this particular discussion topic.  So please see my remarks to you at this link.

https://csn.cancer.org/node/318403

 I hope you find all the information you need to make the best possible decisions regarding surgeons, reputable hospitals, and types of treatments for the different stages of Esophageal Cancer.  The situation you describe with cancer of the stomach and cancer of the Esophagus would be a Stage IV diagnosis, and not usually recommended for anything more than palliative treatments.  But before you go forward with surgery, be sure you have had a second opinion.  This is major – major surgery. 

Wishing for you all the best,

Loretta (William’s wife) William is now into his 16^th year of survival from EC, Adenocarcinoma at the Gastroesophageal Junction, (T3N1M0)  He has had no complications—thank the Lord.

only_you said:

surgery outcome

Hello, I just joined. I am so sorry to hear about your cancer. My husband was just diagnosed in January and is currently going through chemo and radiation. his doctors also recommend surgery to remove his esophagus after the chemo/rad treatments. He also is dreading the surgery and very concerned about quality of life afterwards and considering not having the surgery. Can you tell me a little about how you are doing post surgery? How difficult was recovery, are you still having difficulty trying to eat? How dibillitated has it left you? Do you feel you made the right choice? We have so many questions and would certainly appreciate any feedback you could share. He isn't home right now, but I will show him this site and I know he will sign up and register, he has been looking for this type of forum so that he can have dialog with others in his same situation.

I was diagnosed with esophageal cancer in 2009. I was Stage IIB with a 2 cm tumor at the grastroesophagel junction. I had an Ivor Lewis esophagectomy in December of 2009. I have to say the surgery was extensive and recovery took almost a year before I was back to where I was before surgery. My recovery was slowed by the fact that I had chemotherapy after my surgery and that slowed the process of healing from surgery and extended the time it took me to regain some of the weight I lost after surgery.

I can now do all the things I did prior to surgery and eat pretty much anything I want in moderation. The major lifestyle change is that I now eat seven small meals a day rather than 3 larger meals. It does take some time to adjust to your new digestive sytem and the first year or two after surgery is a process of trial and error to find out what works best. I also have to sleep at a 45 degree angle to guard against reflux as I no longer have a lower esophageal sphincter to keep food from comming up when I lie down.

I would also note that this web site does not get as much traffic as it used to and I would suggest you post your question in the esophageal cancer section of Smart Patients. com. You will find many participants there that have had surgery much more recently than I have that can give youu "more current" experience: https://www.smartpatients.com/conversations

Best Regards,

Paul A

I believe most of us here have had surgical removal of the oesophagus and a large part of stomach for removal of the cancer. All I wish to know here is how are you guys coping up with the post operative changes? How is food and what are the precautions? How does it feel to not gulp food and has the capacity of the stomach reduced?

Frankjw1964 said:

Eating issues

Hi Paul,

I was diagnosed with stage 2 with one lymph node much like yourself. It was a year ago I was given the awful news. I had 6 rounds of the same chemo you were given the. i was then given Ivor Lewis. I was in the hospital for 10 days and all went great. I did one more round of chemo 8 weeks after surgery and could not do the the last round. About 2 months later I felt better and started to take up fly fishing and golf. I'm thinking I might have over did it a bit as my right should blade is hurting so bad I now need PT. My big concern through all this is my lose of appeite. At first I was doing ok but it's gotten worse. My scans are clear both endoscopic and CT. I know I need to work on drinking more water but that fills me up so then I can't eat as much as I need. And eating out seems much more difficult then staying home and eating. Did you experience any of this?

Hi Frank,

Unfortunately, I experienced all of the issues you have described. The area under my right shoulder blade stayed sore for almost a year; and when I did anything strenuous, it ached for a couple years after surgery. I am a golfer like you and I found that after about 8 or 9 holes the right side of my back started to ache and I just had to push my way through it and take acetaminophen when I got home. I also found that sitting with a heating pad on my back after golfing was helpful.

The good news is; even though it took over two years for me, it does get better. However, I have to admit, even now, 10 years later, the right side of my back still tenses up and becomes sore when it is cold and wet outside.

As far as appetite is concerned, I do not experience hunger. I eat about 7 small “snacks” a day “by the clock”. I do eat relatively “normal” meals at the normal breakfast, lunch, and dinner times but only half of what a normal portion would have been for me prior to surgery. For the first couple years after surgery, I was very sensitive to foods high in sugar, or foods that were fried or had a high fat content. They would cause “dumping syndrome” for me, but that gradually went away for me over a few years.

My “typical” diet would be:

Breakfast:   One egg scrambled, one piece of toast, and coffee

Mid morning snack: Package of peanut butter crackers and diet Coke

Lunch: Half a ham and cheese sandwich, a hand full or potato chips and diet Coke

Mid afternoon snack: High protein smoothy made with banana, frozen strawberries, chia seeds, protein powder, and walnuts.

Dinner: 4 ounces of chicken, small serving of corn, some kind of potato or rice, iced tea

7 PM snack: One apple peeled and sectioned

8 PM snack: Small portion of ice cream or yogurt

Eating out is a challenge. Luckily for me, my wife is a small person, and does not eat very much, so she and I almost always split whatever we order. Since I have to be sure I eat slowly so I thoroughly chew my food, and carefully swallow before taking another bite, I tend to eat slower than most people. Our friends all understand my issues and while they originally made comments about how little I ate, they are now used to it. A couple of times we have run into restaurants that want to charge us an extra fee because we are splitting an entrée and we just tell them “fine add it to the bill”.

I have gotten used to not having an appetite, I look forward to some foods because I like the way they taste, but I am never “hungry”. If I don’t eat for more than four or five hours during an active day my body lets me know by having a “low blood sugar” event; where I get weak and shaky and anxious feeling. I always carry a package of Lance peanut butter and cheese crackers with me. I eat those and I am fine within about 5 minutes.

 I am 5’5” tall and I weighed about 150 lbs. prior to diagnosis. After surgery I weighed 105 lbs. I now weigh about 135 lbs. which appears to be my “new normal”

I just think of food as being similar to the medication I take. I need to put a certain number of calories in my body each day. The three meals a day routine most people follow is history for me. I have also learned to ignore comments from friends and family about how much I eat or when I eat. I have learned what my body requires and what happens when I break the rules.

But on the other hand; I am still here and even though my golf game stinks, I can still walk 18 holes of golf at 72.

Hang in there and have patience it does get better.

Best Regards,

Paul

South Side Steve said:

Post Surgery Lifestyle

March 13th marks the 7-year anniversary of my Ivor Lewis surgery. Like you, I was very nervous about my surgery and all the warnings that it was life-changing.  Like Paul posted, I'm also doing everything I did before surgery.  It is a major surgery and takes a long time to fully recover.  I was in the hospital for 10 days.  I had a feeding tube when I was released, but didn't use it because I was able to tolerate liquids by mouth.  I went back to work at a desk job about 2-1/2 months after surgery, but I should have waited a few more weeks.  I was still very weak and had episodes of "dumping."  I also had a 60 mile one-way commute to work.  Other than sleeping on an incline and eating much smaller meals, and giving up my previously favorite spicy foods, my lifestyle hasn't changed as a result of the surgery.  I definitely feel I made the right choice to have the surgery!

If you want more information, please feel free to send me a message on CSN Email and I will give you my contact information.  I know it helped me to talk to someone that had gone through the process.

Steve

Please I need some info about the surgery if you don't mind

Hi R2021,

I have seen this question asked many times over the 11 years I have been a part of this forum. None of us wanted to go through this surgery. I was 61 when I had this surgery. Recovery took about a year before I felt normal again. However, once recovered with some minor life stye changes life goes on as before. Even if scans say they don't see any additional cancer it could still be there. I don't know how many times I have read that scan showed a complete response to chemotherapy and radiation only to read that after surgery the surgical pathology showed active cancer cells below the dead tumor in the esophagus. In my case, my scans showed no lymph node involvement but my surgical pathology showed active cancer in the nodes removed. 

So, nobody wants this surgery, but it is your best chance for clear scans in the future. At 75, unless you have other underlying serious health issues, you have every chance of at least another 10 years of active life in front of you. 

Regards,

Paul