What To Expect

Hey All..

I'm new here and by reading so many of the stories, I have found myself digging for answers.

My husband was dx'ed stage3, 1N in November. They immdiately started chemo/radiation. He completed his treatment on New Years Eve. It was a horrible holiday. He was sick, couldnt eat, lost alot of weight and slept most of the time.

They have a PET Scan set up for Feb 20th, and if all looks ok, surgery will be the next day. They have gone over the surgery with us, but by reading some of the stories, it seems to be alot worse then they have explained.

so, here a few questions that I can't seem to get off my mind.

1. For so many people having this type of cancer, why do they tells us it is a very *uncommon* type?

2. When our oncologist tells us, chemo kills all cancer cells, then why and how does it come back?

3. Has anyone ever been *cured* from this type of cancer?

4. I've read the stats on it and it seems that most aren't actually cured, that sometime down the road, it re-occurs? Am I not reading it correctly.

5. The surgery? So many have written that they never actually get back to 100%....is this true?

I could go on and on, but these are the ones that won't pop out of my head.

My husband is soooo positive, and I know I need to be as well, but when I am alone, the fears grow!

Thank you all in advance...and my prayers are with all of you.

Diana

 

On 1/28/2008 sweetbabegirl wrote:

Hey All..

I'm new here and by reading so many of the stories, I have found myself digging for answers.

My husband was dx'ed stage3, 1N in November. They immdiately started chemo/radiation. He completed his treatment on New Years Eve. It was a horrible holiday. He was sick, couldnt eat, lost alot of weight and slept most of the time.

They have a PET Scan set up for Feb 20th, and if all looks ok, surgery will be the next day. They have gone over the surgery with us, but by reading some of the stories, it seems to be alot worse then they have explained.

so, here a few questions that I can't seem to get off my mind.

1. For so many people having this type of cancer, why do they tells us it is a very *uncommon* type?

2. When our oncologist tells us, chemo kills all cancer cells, then why and how does it come back?

3. Has anyone ever been *cured* from this type of cancer?

4. I've read the stats on it and it seems that most aren't actually cured, that sometime down the road, it re-occurs? Am I not reading it correctly.

5. The surgery? So many have written that they never actually get back to 100%....is this true?

I could go on and on, but these are the ones that won't pop out of my head.

My husband is soooo positive, and I know I need to be as well, but when I am alone, the fears grow!

Thank you all in advance...and my prayers are with all of you.

Diana

Hi Diana-I'll try to share my experience with you.  It seems like so many people have this cancer because we are hanging out with others who have it.  Compared to something like lung cancer, the numbers are small since 10-20 times more people will be diagnosed with lung cancer this year.  What is shocking is that the % rate at which it is increasing is huge compared to other cancers and they aren't sure why.  In terms of cancer cells, all of us carry cancer cells but most of us are able to kill them off with healthy immune systems.  When a patient is in remission it is likely there are still a small number of cancer cells lurking, so if it has an environment that is conducive to growth, it will find a way.  Chemo can be systemic, and I think it always is with esophageal since it metastasizes so quickly, so it goes after cancer cells anywhere in the system.  There are clearly people who have survived this cancer, and I'm sure some of them have never seen it return in any form.  Someone diagnosed early has a better shot at that than someone who is  stage 4 at diagnosis.  The surgery is big, but the body has an amazing capacity to heal itself.  By the 20th he will be much stronger since he is done with treatment.  You still have weeks to build strength.  Try to keep him as well fed as possible to build him up since nutritional status at surgery makes a big difference in how easy it is to recover.  I always enjoy cyclist posts because they encourage you to keep moving and it's always a positive message, and that's important too.  Your husband's attitude sounds excellent!  Will keep you in my prayers.   

Diana,

First it really stinks that you had to join this group, but this is the place to be for questions.  My hubby was dx in Sept 06 and I can just go on what I have learned from his experiences.  Before he was dx I don't think I ever heard anyone say the word esophagus, and now I seem to hear it all the time.  I think you listen for it more now than you ever did before.  I really don't know about chemo killing all cancer cells.  You're right if it kills all cancer cells than why do so many not survive from cancer?  If it helps you at all my husband was also stage 3 and after the first chemo before surgery, the chemo shrunk the tumor out of sight on the scan.  I really hope your husband has the same results.  As far as getting back to 100%, again I can only speak for us, and I know that my husband will never ever be that 100% again.  He will become a new 100% though, just not the same person he was before.  He has lost about 80lbs. and doesn't eat a whole lot anymore, and has to sleep propped up.  It has been almost a year since surgery and he still makes himself eat and everyday he checks his weight.  But it is ok.  He's here, with me and our children.  He is a very positive person also and that has helped me.  Isn't that awful, that he was helping me get through his cancer battle, but he did and I am so greatful for that.  I don't know if I have helped at all or even answered your questions, but I wish your husband the best of luck with the scan and the surgery.  Keep us updated when you can.

-Becky

I am four years out and I, like everyone else that has had this dreaded disease, am afraid to say I am cured. I will say I have clear ct's and everything looks good according to my doctors, however with each pain I am always expecting the worse.  I am better now than I was three years ago and I hope that eventually my fear will go away.  But I suffered the trips to the bathroom, weight loss, mouth sores, no appetite, feeling so tired that I needed naps.  All of this is part of the process and I know I will never have the energy level that I once had, but today my conditions seems totally normal to me.  I am grateful to be alive and enjoying this beautiful day.  A positive attitude and good nutrition is the most important thing.  I had to force myself to eat one or two bites of something loaded with calories every hour, and meat and Ensure was out of the question, so I depended on cheese for protein.  Keep your spirits up and expect the best until someone tells you differently.  My prayers are with you.  Keep us posted, I depend on this board each day  to lift my spirits or allow me to give comfort to someone else thats hurting and scared.

 

On 1/28/2008 sweetbabegirl wrote:

Hey All..

I'm new here and by reading so many of the stories, I have found myself digging for answers.

My husband was dx'ed stage3, 1N in November. They immdiately started chemo/radiation. He completed his treatment on New Years Eve. It was a horrible holiday. He was sick, couldnt eat, lost alot of weight and slept most of the time.

They have a PET Scan set up for Feb 20th, and if all looks ok, surgery will be the next day. They have gone over the surgery with us, but by reading some of the stories, it seems to be alot worse then they have explained.

so, here a few questions that I can't seem to get off my mind.

1. For so many people having this type of cancer, why do they tells us it is a very *uncommon* type?

2. When our oncologist tells us, chemo kills all cancer cells, then why and how does it come back?

3. Has anyone ever been *cured* from this type of cancer?

4. I've read the stats on it and it seems that most aren't actually cured, that sometime down the road, it re-occurs? Am I not reading it correctly.

5. The surgery? So many have written that they never actually get back to 100%....is this true?

I could go on and on, but these are the ones that won't pop out of my head.

My husband is soooo positive, and I know I need to be as well, but when I am alone, the fears grow!

Thank you all in advance...and my prayers are with all of you.

Diana

Diana,

I can't blame you for being confused with all the conflicting information. After being diagnosed with stage l EC, I had surgery, an esophagogastrectomy (Ivor-Lewis) in 2005. Three clean pet scans later, I consider myself "healed". I am now almost 57 years old.

1. EC is still relatively rare, but is becoming less so. With people carrying more weight, hiatal hernias and acid reflux are becoming more common. It just follows that EC is on the increase.

2.  I never had Chemo or radiation, so I don't know.

3. Yep, and I'm one of them. I think survivors don't post much here because they don't have the need. So, what you hear is the bad news - not the good so much.

4. Depends on the stage when found and treated.

5. The surgery I had is "The Surgery. There isn't any more invasive or drastic. I'm not 100% - more like 95%. I still can't eat as much as I did before - that is not necessarily a bad thing. I also have some pain. But, I work full time, keep up with three grandkids, and can cycle faster and farther that most guys 30 years old.

Your husband being positive will help as much as anything. Show him you are too. He'll need your support, right after surgery, more than you can know. It's hell. (I consider myself pretty tough, but I NEVER would've made it through the first week after surgery without my wife's constant support.)

Last- Tell your husband to keep moving - before and especially after surgery. That was the advice my surgeon gave me and I followed through to the extreme. I believe that's the best thing you can do.

Good Luck and keep in touch,

Steve

 

Gerri-You are a great inspiration as a survivor.  Thanks for sharing with us regularly.

 

On 1/28/2008 Cyclist wrote:

 

On 1/28/2008 sweetbabegirl wrote:

Hey All..

I'm new here and by reading so many of the stories, I have found myself digging for answers.

My husband was dx'ed stage3, 1N in November. They immdiately started chemo/radiation. He completed his treatment on New Years Eve. It was a horrible holiday. He was sick, couldnt eat, lost alot of weight and slept most of the time.

They have a PET Scan set up for Feb 20th, and if all looks ok, surgery will be the next day. They have gone over the surgery with us, but by reading some of the stories, it seems to be alot worse then they have explained.

so, here a few questions that I can't seem to get off my mind.

1. For so many people having this type of cancer, why do they tells us it is a very *uncommon* type?

2. When our oncologist tells us, chemo kills all cancer cells, then why and how does it come back?

3. Has anyone ever been *cured* from this type of cancer?

4. I've read the stats on it and it seems that most aren't actually cured, that sometime down the road, it re-occurs? Am I not reading it correctly.

5. The surgery? So many have written that they never actually get back to 100%....is this true?

I could go on and on, but these are the ones that won't pop out of my head.

My husband is soooo positive, and I know I need to be as well, but when I am alone, the fears grow!

Thank you all in advance...and my prayers are with all of you.

Diana

Diana,

I can't blame you for being confused with all the conflicting information. After being diagnosed with stage l EC, I had surgery, an esophagogastrectomy (Ivor-Lewis) in 2005. Three clean pet scans later, I consider myself "healed". I am now almost 57 years old.

1. EC is still relatively rare, but is becoming less so. With people carrying more weight, hiatal hernias and acid reflux are becoming more common. It just follows that EC is on the increase.

2.  I never had Chemo or radiation, so I don't know.

3. Yep, and I'm one of them. I think survivors don't post much here because they don't have the need. So, what you hear is the bad news - not the good so much.

4. Depends on the stage when found and treated.

5. The surgery I had is "The Surgery. There isn't any more invasive or drastic. I'm not 100% - more like 95%. I still can't eat as much as I did before - that is not necessarily a bad thing. I also have some pain. But, I work full time, keep up with three grandkids, and can cycle faster and farther that most guys 30 years old.

Your husband being positive will help as much as anything. Show him you are too. He'll need your support, right after surgery, more than you can know. It's hell. (I consider myself pretty tough, but I NEVER would've made it through the first week after surgery without my wife's constant support.)

Last- Tell your husband to keep moving - before and especially after surgery. That was the advice my surgeon gave me and I followed through to the extreme. I believe that's the best thing you can do.

Good Luck and keep in touch,

Steve

 

Steve,

I have read many of your entries any find you very inspiring.  My father had the "three hole proceedure" 3 weeks ago.  It is an esophagetomy that is less invasive.   There is no abdominal incision so his post-op pain was less I believe.

I am writing to find out what you eat.  We are having a tough time figuring this all out.  He does have a j-tube still but never tolerated feeds through it at the hospital so they stopped using it.  He does tolerate some cream of wheat, soup, mashed veggies and did tolerate some white fish.  But these things do grow old quick!  He has only had 1 episode (knock wood) of dumping and does not have any complaints of reflux.  Just uncomfortable feelings of "being full" up by the top of his throat.

I was just looking for ideas, it sounds like you have done so well and I want to help my Dad so much.  We have gone out walking and he is willing to do all he needs, but afraid to eat....especially meat.

Any suggestions!

Thank you so much and I pray your recovery remains postive!

Laura 

 

 

Steve,

I have read many of your entries and find you very inspiring.  My father had the "three hole proceedure" 3 weeks ago.  It is an esophagetomy that is less invasive.   There is no abdominal incision so his post-op pain was less I believe.

I am writing to find out what you eat.  We are having a tough time figuring this all out.  He does have a j-tube still but never tolerated feeds through it at the hospital so they stopped using it.  He does tolerate some cream of wheat, soup, mashed veggies and did tolerate some white fish.  But these things do grow old quick!  He has only had 1 episode (knock wood) of dumping and does not have any complaints of reflux.  Just uncomfortable feelings of "being full" up by the top of his throat.

I was just looking for ideas, it sounds like you have done so well and I want to help my Dad so much.  We have gone out walking and he is willing to do all he needs, but afraid to eat....especially meat.

Any suggestions!

Thank you so much and I pray your recovery remains postive!

Laura 

 

Laura,

Nothing can make someone feel better than hearing that they may be helping someone. Thanks! 

From what I remember, I think your Dad is doing quite well. Three weeks is not very long. Our surgery was not exactly the same, but I believe pretty close. It's been 2 1/2 years now, but I can remember being able to eat only very small amounts and almost everything tasting BAD. I couldn't eat chocolate or drink Diet Mountain Dew - 2 of my staples. What worked for me was eating food that was spicier than I would normally eat. I ate cans and cans of minestone. I had never eaten it before surgery and now can't even look at it. (I have a dozen cans left!!)

Anyway, try different foods, not necessarily what were favorites before surgery. Spice it up a little - small bites - small portions - eat slowly. Try peanut butter. It has good fat and lots of protein.

It will get better. Your Dad will get his sense of taste back. He'll be able to eat bigger potions.

Today, I eat everything I did before - just smaller portions. If I eat too much, at one time, it hurts and I wait it out. When we go to a restaurant, I ask for a doggie box when they bring the meal. I take half the meal home. 

Give it time. Keep moving!

Good Luck and keep in touch,

Steve 

                 

 

 

Laura,

I forgot something: In the evenings, I eat air-popped popcorn with lots of extra virgin olive oil on it. You can flavor it or spice it up all kinds of ways. Whole grain and good fats.

I've suggested this to a few of my friends. Some like it - some don't. It's worth a try.

 Again, Good Luck,

Steve