My EC Story

crystalbay

I spent an hour writing my story earlier today but it refused to complete "submit", so I'll try again. I've just recently found this site & realize only now how important the details are. Here's my story.

For over a year I had difficulty swallowing pills at times. At times, painful heart-attack like spasms occurred. I finally had an endoscopy which showed a small "polypoid" (a polyp without a stem) at the junction. They thought it was nothing but took a biopsy. It was EC.
Within two weeks I was scheduled for major surgery as both the PET & CAT scans showed no other sign of cancer. My best friend demanded that I go to Mayo (MN)for a second opinion. Mayo did a EUS (only offered in three locations in MN) and staged my cancer at III (T2 N1 M0).

This of course necessitated a 6-week course of chemo and radiation with 6 weeks off before the radical Ivor Lewis surgery. The docs here, upon hearing the EUS results apologized over & over because they knew had I allowed the surgery without other treatment, they'd have had to open & close me! This trauma, plus extra time for recovery, may well have allowed the cancer to advance. The local doctor's decision to NOT order/refer an EUS could've cost my life.

As a result, I had the surgery done at Mayo by Dr. Mark Allen, head of thoracic surgery, who does 30 of these surgeries a year. The hospital unit handles 200 a year. Excellent stats for a good outcome. Just prior to surgery, a EUS showed no trace of cancer in the one previously hot node nor any trace of the 2cm tumor. I went into the operation "clean". I'd been told that my "burden of cancer" was exceptionally "light".

Although I sailed through chemo/radiation with no side effects whatsoever, the surgery nearly did me in. Mayo erred by discharging me after only one week even though I lived alone and was so whacked out on narcotics I couldn't function. One day after discharge, I could barely breath and was hospitalized locally with double pneumonia for two weeks. After that I was in & out of the hospital and ultimately spent 6 horrible weeks in a nursing home since I couldn't take care of myself at home. I'm a vital 66-year old and everyone else there was 20+ years older. The care compromised my recovery greatly. At my 6-week post-op consult in Mayo, I was so ill from dehydration and no motility in my new stomach that I was hospitalized for a week in Rochester.

I started out as a size 2 and now have lost 20 pounds. I've only been home for two weeks now out of the 3 months since the surgery. Finally in the last few days I'm starting to rally and feel well. I've only had major reflux 3X and dumping 2X, so I'm lucky I guess? Hydration has been my greatest downfall & caused near-constant nausea although I just learned this a few days ago. I have my first PET scan at the end of September and reading this site has frightened me with all the recurrence stories.

zinniemay

E.C.
My husband in Sept of 08 started having feeling that he could not shallow, He went to a Ear Nose throat doctor, Set up by our family doctor, when he got there he did not see the Doctor saw a N.P. He was mad said he paid good money to see "The" doctor not a flunky. By Jan 09 be did go back and got to see the doctor , they did a biopsy it was cancer. So We went to Ann Arbor , there they did a second biopsy they said T-4 ni mo and because of the size of the tumor he could not have surgery. But started Chemo and Radaition March 09 for seven weeks, Everything was good till Dec. The saw nudule did not look right, but said every one has this but because he had cancer they would keep their eyes on them. Feb , they were a little bigger, May they told us that he had four tumors two on each lung . That he has a year without treatment maybe 2 with treatment. So he is doing carbosplatin Chemo . After the second round of Chemo they said one tumor is gone and the other three were smaller by 30 to 40 percent. He will do 8 rounds of chemo and then wait and see. He never smoked or dranked. He always ate all the good foods, fish, Chicken, veggies.
This it the hand we were dealt. He is so far doing good, he eats like a horse. He does get weak and stomach cramps.But he still works in the garden and does things . We are trying to live our live like we always have. there are times but who knows ? Can anyone say that on this day he will die? I think not. Mircles happen everyday. It is one day at a time. We are all terminal.

tb7

Welcome . . .
Like ZinnieMae, I just wanted to respond and encourage you to take it easy and also to take one day at a time. Don't be frightened with anticipation . . . it is best to focus on treating yourself properly and making sure you get past your current issues. I think there are others on this site who have advised you already re your hydration issues. My husband never experienced dehydration. He does, however, need to be very careful about eating to make sure he doesn't eat too much at any one time and to make sure that he eats only food that will agree with him. He needs to "just say no" to sweets unless they come at the end of a meal, and he cannot drink much of anything before eating or he ends up uncomfortable and nauseous. Your system now processes food and liquids differently than before surgery. It is best to eat more complex foods first so that food does not pass too quickly from your stomach to the intestines. That, in the experience of many, is what causes most digestive discomfort. There is another poster (Paul61) on this discussion board who has referenced some articles about this subject. You might want to either contact him or check back on prior postings for his recommendations.

My best to you during this phase of your recovery . . .

Trisha

P. S. I generally create my responses in a word processing program, in my case Word. I have had many responses get "lost in space" when trying to submit them directly on the site. So, you might try writing your response first within another program, then copy and paste it into the site . . . just a tip!

crystalbay

zinniemay said:

E.C.
My husband in Sept of 08 started having feeling that he could not shallow, He went to a Ear Nose throat doctor, Set up by our family doctor, when he got there he did not see the Doctor saw a N.P. He was mad said he paid good money to see "The" doctor not a flunky. By Jan 09 be did go back and got to see the doctor , they did a biopsy it was cancer. So We went to Ann Arbor , there they did a second biopsy they said T-4 ni mo and because of the size of the tumor he could not have surgery. But started Chemo and Radaition March 09 for seven weeks, Everything was good till Dec. The saw nudule did not look right, but said every one has this but because he had cancer they would keep their eyes on them. Feb , they were a little bigger, May they told us that he had four tumors two on each lung . That he has a year without treatment maybe 2 with treatment. So he is doing carbosplatin Chemo . After the second round of Chemo they said one tumor is gone and the other three were smaller by 30 to 40 percent. He will do 8 rounds of chemo and then wait and see. He never smoked or dranked. He always ate all the good foods, fish, Chicken, veggies.
This it the hand we were dealt. He is so far doing good, he eats like a horse. He does get weak and stomach cramps.But he still works in the garden and does things . We are trying to live our live like we always have. there are times but who knows ? Can anyone say that on this day he will die? I think not. Mircles happen everyday. It is one day at a time. We are all terminal.

Such a hard road..........
I'm sorry for all you've had to endure - it sounds very difficult. So he still hasn't had any
surgery?? It sounds like he's already had his two years?

I forgot to add that I was on the J tube for six weeks and my surgeon didn't allow even water
to pass through my new stomach for a full month following surgery. Thirst was awful!!!

At times this still isn't real for me. I just don't identify with being a cancer survivor much less that it may recur ever. The doctors said that my EC was caused by "silent GERD". I never suffered heartburn but there were symptoms of a problem which I totally ignored for over a year. The public desperately needs to be educated about this cancer & its warning signs.

As to a long life - I have 10 grandchildren & a delightful life. The way I'm looking at it, if the stats for Stage III are correct, only 10% will survive 5 years and I see NO reason why I won't be in that 10%!! Somebody has to be in that rare group, after all!

zinniemay

tb7 said:

Welcome . . .
Like ZinnieMae, I just wanted to respond and encourage you to take it easy and also to take one day at a time. Don't be frightened with anticipation . . . it is best to focus on treating yourself properly and making sure you get past your current issues. I think there are others on this site who have advised you already re your hydration issues. My husband never experienced dehydration. He does, however, need to be very careful about eating to make sure he doesn't eat too much at any one time and to make sure that he eats only food that will agree with him. He needs to "just say no" to sweets unless they come at the end of a meal, and he cannot drink much of anything before eating or he ends up uncomfortable and nauseous. Your system now processes food and liquids differently than before surgery. It is best to eat more complex foods first so that food does not pass too quickly from your stomach to the intestines. That, in the experience of many, is what causes most digestive discomfort. There is another poster (Paul61) on this discussion board who has referenced some articles about this subject. You might want to either contact him or check back on prior postings for his recommendations.

My best to you during this phase of your recovery . . .

Trisha

P. S. I generally create my responses in a word processing program, in my case Word. I have had many responses get "lost in space" when trying to submit them directly on the site. So, you might try writing your response first within another program, then copy and paste it into the site . . . just a tip!

Food
Greg eats like a horse, He has a good out look. , So we just take it as we can . Maybe we just think he can be one of the feww. T4 Ni Mo is not good, his went to his lungs I have not seen many on here that went to the lungs, most seam to have gone to the liver?
He is my best friend, we have to adult children but neither are married or interested so no grandchildren only puppies. So makes it harder, No Church for support, very few friends, and seams to get less everyday. So really outlet for us so we have to do what we can on our own. Makes for a very loely time of it. This site seams like the only place to vent . We go to Ann Arbor Mi it is about 130 miles away for treatment.
Thanks for hanging in there with me. You are all in my thoughts . Slowly as I get better at this maybe I will be able to explain more about what is going on with Greg. Except for the T-4n! Mo Larynx Squamous cell Cancer Metastic , I really have very little clue .

crystalbay

zinniemay said:

Food
Greg eats like a horse, He has a good out look. , So we just take it as we can . Maybe we just think he can be one of the feww. T4 Ni Mo is not good, his went to his lungs I have not seen many on here that went to the lungs, most seam to have gone to the liver?
He is my best friend, we have to adult children but neither are married or interested so no grandchildren only puppies. So makes it harder, No Church for support, very few friends, and seams to get less everyday. So really outlet for us so we have to do what we can on our own. Makes for a very loely time of it. This site seams like the only place to vent . We go to Ann Arbor Mi it is about 130 miles away for treatment.
Thanks for hanging in there with me. You are all in my thoughts . Slowly as I get better at this maybe I will be able to explain more about what is going on with Greg. Except for the T-4n! Mo Larynx Squamous cell Cancer Metastic , I really have very little clue .

I get it..........
No matter how many angels surround us in this battle, each of us is ultimately alone with it
in the middle of the night or on a stormy afternoon. This illness truly is isolating. I'm going to suggest that you go to my Caring Bridge web page and, if you're interested, begin
reading about my journey from the beginning, Zinniemay. It's accessible, entertaining and I think may help you feel more connected to another journey-mate. It's: caringbridge.org/visit/nancyedwards1

Enjoy:)
Nancy

zinniemay

crystalbay said:

I get it..........
No matter how many angels surround us in this battle, each of us is ultimately alone with it
in the middle of the night or on a stormy afternoon. This illness truly is isolating. I'm going to suggest that you go to my Caring Bridge web page and, if you're interested, begin
reading about my journey from the beginning, Zinniemay. It's accessible, entertaining and I think may help you feel more connected to another journey-mate. It's: caringbridge.org/visit/nancyedwards1

Enjoy:)
Nancy

Thank you
Nancy thank you, I may do that one day. Right now I can not keep up with everything! I know that you feel alone . That is the sad part for anyone on any journey like this. When the noise stops and it is quite. Then the thoughts start bouncing around the what if's . I know this .
I wish you the best.


Jennie
aka Zinniemay

sandy1943

crystalbay said:

Such a hard road..........
I'm sorry for all you've had to endure - it sounds very difficult. So he still hasn't had any
surgery?? It sounds like he's already had his two years?

I forgot to add that I was on the J tube for six weeks and my surgeon didn't allow even water
to pass through my new stomach for a full month following surgery. Thirst was awful!!!

At times this still isn't real for me. I just don't identify with being a cancer survivor much less that it may recur ever. The doctors said that my EC was caused by "silent GERD". I never suffered heartburn but there were symptoms of a problem which I totally ignored for over a year. The public desperately needs to be educated about this cancer & its warning signs.

As to a long life - I have 10 grandchildren & a delightful life. The way I'm looking at it, if the stats for Stage III are correct, only 10% will survive 5 years and I see NO reason why I won't be in that 10%!! Somebody has to be in that rare group, after all!

Like you I was staged at 111
Like you I was staged at 111 with 2 lymph nodes in stomach( DON"T know how to write it out). Also like you ,I didn't have severe heartburn. Over a two yr. period, twice I did have hurting in my chest and the dr. checked my heart.I consider myself being cancer free since my Ct scan in Nov.2008. My next scan is in Oct. I always get a little apprehensive befor the test, but I shake it off. I know the survival rate, but I am a survivor and refuse to get caught up in statistics. I had rather join you in that rare 10%. I also have grandchildren and two greats--one was born two weeks ago.
My main problem now is trying to gain weight. I lost 98 pds. I have started drinking a protein powder shake to see if this will help. I love to eat and do eat regularly, so this has not been my problem.
I've only been on this site since June and feel like I'm learning so much. Since I was diagnosed in Nov. 2007 I searched for information. Sometimes I felt so alone. I guess that's why I come here so often. It is an encouragement to me to know I'm not alone in this fight.