Esophageal Cancer Support Group
Esophageal cancer is malignancy of the esophagus. There are various subtypes. Esophageal tumors usually lead to dysphagia (difficulty swallowing), pain and other symptoms, and is diagnosed with biopsy. Small and localized tumors are treated with surgery, and advanced tumors are treated with chemotherapy, radiotherapy or combinations.
Hello to everyone in this group.
I have been reading the posts here since I was diagnosed on April 25th. As everyone here knows this news is devastating. In March I noticed some nausea and discomfort while swallowing. I had the barium swallow followed by the endoscopy.
My endoscopy biopsy revealed a neuro-endocrine tumor near the junction with the stomach. I've tried to find out as must about it as I can but there is
little information as it is very rare.
The PET scan showed no spread at that time.
My oncologist says that these types of tumor do not respond to chemo or radiation well, so those courses are not in the picture. My surgeon agrees.
I am scheduled for the surgery next week.
Both my wife and I are afraid of what faces us.
I am particularly apprehensive about the surgery and recuperation.
Relying on faith and looking for hope.
I have been reading the posts here since I was diagnosed on April 25th. As everyone here knows this news is devastating. In March I noticed some nausea and discomfort while swallowing. I had the barium swallow followed by the endoscopy.
My endoscopy biopsy revealed a neuro-endocrine tumor near the junction with the stomach. I've tried to find out as must about it as I can but there is
little information as it is very rare.
The PET scan showed no spread at that time.
My oncologist says that these types of tumor do not respond to chemo or radiation well, so those courses are not in the picture. My surgeon agrees.
I am scheduled for the surgery next week.
Both my wife and I are afraid of what faces us.
I am particularly apprehensive about the surgery and recuperation.
Relying on faith and looking for hope.
Thanks for your encouragement. I would be interested in reading your journal. Learning how others cope after surgery will give me insight on how to travel this difficult road.
I can't help you any with answers about surgery and as my Stage 4 brother hasn't had it, but you've definitely come to the right site. Lots of folks here are very knowledgeable and will be glad to help you out.
Good luck!
you need to sleep on about a 30 degree incline so that acid does not back up into your throat when you sleep, and you should not eat 3 hours before bedtime. I bought an adjustable bed and had to get used to sleeping on my back but not so bad now.
you will need to eat small meals more frequently but I have been able to maintain my weight since being off tube.
so now 8 weeks post surgery not feeling bad and back at work, do get tired in the afternoon but doc says it will be several months (up to 6) before fatique is gone.
All things considered and considering the alternative the adjustments we need to make are worth making for a shot at survival.
Hang in there I will say a prayer for you.
Learning of your experiences shows me that there is hope.
My surgery will be a stomach pull-through. According to the surgeon,
he will make two incisions. He will remove 2/3 of the esophagus and 1/3 of the stomach and pull it through to join them. He plans to also take the nearby lymph nodes.
I think my surgeon is going for maximum effect.
Of all the treatment my husband had, he thinks the surgery might have been the easiest. I'm not trying to downplay how serious it is. But, he had a really tough time with his 2nd round of chemo.
His doctor did an excellent job with pain control after the surgery. One of the most difficult things, was not being able to eat for a few days and then the j-tube (he had problems with his but I understand that's unusual).
It amazes me how he can eat now (he had his surgery in July). We went out for a Mother's Day Buffet. He ate a full plate of food, had some extra fruit, and then a dessert. The only problem now is with eating too much carb without protein and he did have a bit of difficulty with a New York steak. And, he is having a difficult time gaining weight back. He lost about 80 lbs but much of that was due to chemo.
Anyone would be fearful, but as others have said, it's really hopeful that the doctors are willing to move forward with surgery. I truly wish you the best and let us know how things go.
Linda
I had an extremely conservative surgeon who wouldn't allow anything by mouth for a month - even water - but most doctors have patients drinking/eating much sooner. I was on a J-tube for almost four months. Many of us lose all sense of appetite, so keeping enough weight on is problematic. I feel full and disinterested in food every waking hour. At this point, four years and a dozen clean PET scans later, being far too thin is the only lasting effect from the surgery. Sleeping in one position on my back has been really pleasant and easy to adapt to as well. In fact, I never slept so soundly before.
I did have my very first acid reflux attacks only after the surgery - I think that's because having your stomach basically attached to your throat is just a much shorter distance to arise. Both reflux attacks and the dumping syndrome gradually ceased. It took about half a year to feel my "new normal", but I'd do it again tomorrow rather than risk recurrence.
Like Brenda, I'll offer my Caring Bridge journals (daily for about one year): caringbridge.org/visit/nancyedwards1
Will let everyone know how it went as soon as I can.
Prayers for all of you too.
I had the surgery and it went well. The surgeon, Dr. Harley, said that he did not have to take as much tissue as he originally thought. He took the tumor, about 1/3 of the esophagus and a small section of the top of the stomach with a few lymph nodes. He is waiting for the biopsy report. He did not insert a feeding tube. The epidural and catheter are to be removed this evening. The swallow test is scheduled for Monday or Tuesday. Keep those prayers going.
Been offline because of computer issues.
I have been home for a week and on a puree diet. I am getting concerned about the weight loss. Dropped another 10 lbs. since I came home. I will see the surgeon next week. Maybe I can get on an upgrade diet then.
Before leaving the hospital the surgeon said that the pathologies came back clear. No other issues. I feel like the prayers are being answered.