Esophagectomy after complete response

I am so very sorry to hear about your diagnosis.  It is a horrible thing. 

Have you had a 2^nd opinion and are you dealing with a hospital that specializes in this surgery?  Your story is very similar to my husbands; he was diagnosed at the end of April, 2012.  He had a minimally invasive esophagectomy the end of August last year.  His surgeon and the hospital staff at the IU Cancer Center in Indianapolis were top notch.  I cannot say enough good things about them.  There were very minor complications after the surgery, nothing that wasn’t quickly taken care of.  He was in the hospital 9 days, was going into his office for a couple hours a day after the 4^th week and was back full time after 8 weeks. 

Everyone’s experience is different, but the right choice in surgeon and hospital is crucial to recovery and even then the outcome can still be less than hoped for.  There is nothing we would have done differently after the diagnoses.  My husband, Paul, diagnosed stage 3,  had no evidence of the disease after the chemo/radiation but all his doctors told him the surgery was best course of treatment and he was lucky to be a candidate.  Paul has had clean scans since and is doing all the things he did before the diagnoses, sometimes a little slower, and he has the digestive issues that come along with it, but those seem so insignificant now. 

That’s our story so far.  If you elect to have the surgery, this website is a wonderful resource (and even if you don’t).  Good luck with your decision and know there will be all kinds of people here pulling for you, praying for you and willing to share with you their invaluable experiences.   

Faith517 said:

Esophagectomy after complete response

Thank you so much for your responses.  I'm scheduled to have the Ivor-Lewis MIE at RUSH University Medical Center in Chicago on August 5th.  I would really like to connect with more folks who have had this procedure done and learn about how this life-altering procedure affected their/your daily lives, how the recovery went, dietary changes, sleeping issues, acid reflux, etc.

Many many thnx!

My husband had ivor Lewis April 23, 2013. His surgeon was Dr bilimoria he trained at md Anderson.  My husbands surgery was at northwest in arlington heights  I would do a little research on rush. You need to ask how many times the surgeons has performed this surgery as well as how many have been preformed at rush. If the surgery is not bad enough the level of care afterwards has to be outstanding. My husband is back to a very physcial demanding job after 3 months.   Feel free to message us if you have any questions. 

ebawa said:

No surgery

Hello Faith517,

Everyone should make their own treatment decisions.  I was diagnosed stage III in Feb 2011.  I had 26 radiation sessions while on 5FU and Cisplatin.  During that treatment it spread to my liver and I was then stage IV.  I then did a second regiment of Chemo (Docetaxel & Irinotecan).  In Oct 2011 I had another Endoscopy and CT scan and both were clear.  I have been NED for almost two years now.  I juice, drink essiac tea and do H2O2 therapy every day.  I have worked through all of the treatments except about 3 weeks when I was very sick.  I feel great now and eat what ever I want and still have 3 full meals a day.

My doctors recommended surgery to me but I have elected not to do it.  Instead, I eat well, juice, drink essiac tea and do H2O2 therapy every day and pray.  I have been on this board for more than two years and I have seen others that are surviving without surgery and I have seen many that have had the surgery pass away.  For me, I believe my quality of life is much better than anyone who has had the surgery.

I am not telling you that you should or shouldn't have surgery, it is a personal decision.  However in fairness I wanted to make sure you heard both sides.

If you have not read the book Knockout by Suzanne Sommers I strongly recommend it.  Traditional treatments are not the only way to fight cancer.

Take care,

Alan

Can you tell me what specifically you juice. I am having a difficult time. All my concoctions are not very pleasing to the palate. I usually add protein powder to get additional protein for my husband since I am trying to limit his meat intake.

Thanks

callerid said:

Ebawa

Can you tell me what specifically you juice. I am having a difficult time. All my concoctions are not very pleasing to the palate. I usually add protein powder to get additional protein for my husband since I am trying to limit his meat intake.

Thanks

After much reading, we also started juicing.  In addition to other suggestions, we add spinach, kale, cherries, squeeze fresh limes and lemons into the mix, pineapple and mango.  I do not add protein powder, but I do add flax, sometimes.

Faith517 said:

Esophagectomy after complete response--no surgery

Thanks, Alan. This is making my decision extremely difficult.  Nothing says that even if I have the surgery that the EC will not return.  The surgeon is not taking the entire esophagus out so . . . 

I feel extremely alone and scared right now -- not to mention pressured as according to the surgeon, the esophagectomy needs to happen on August 5th or forever hold my piece.

Thank you

Vida

Hello Vida,

I know it is a difficult decision that each of us must make for ourselves. While I was in treatment (chemo and radiation) I read the book Knockout and it opened my eyes to the fact that there are alternatives and I am very involved with holistic therapies. Many people elect to have the surgery but for me I felt I would be better off without it.

I am sorry I caused you difficulty with your decision but I did want you to know that surgery is not the only option.

I suggest you pray for help with your decision then go with your decision and don’t look back. 

You are in my prayers.

Take care,

Alan

callerid said:

Ebawa

Can you tell me what specifically you juice. I am having a difficult time. All my concoctions are not very pleasing to the palate. I usually add protein powder to get additional protein for my husband since I am trying to limit his meat intake.

Thanks

Hi, my mom detests the bad aftertaste of protein powder as well.  Interestingly, some veges have alot of protein.  Spinach, kales, mushrooms, broccoli, brussel sprouts to name a few.  I'm juicing for my mom right now because she can't stand the ensures/boosts, and I've tried the various protein powders which make her gag.  She is able to tolerate the juices and I have 2 separate containers.  Organic carrot/granny smith apples and a green juice of spinach/kale (bitter) and I mix the 2 for her.  Sometimes she only wants to drink the carrot/apples and she has this with you pain meds because it helps w/ the vomitting.  Try the juicing to get nutrients and a little more protein.

Heeran

Hi Faith,

My name is Bobby, Male and 48 at diagnoses. diagnosed 2/22/12 tumor at ge junction. Taxol and carboplatnium along with radiation 04-05/12, unfortunately my tumor was still there, but on the bright side there was no metastasis. Minimal invasive esophagectomy 06/18/12 at Duke University Hospital where I also ended up with a clot in my leg ( i was walking more than they required and it still happened, cancer and surgery put you at a higher risk for it ). and as a bonus because I was young and healthy and thier long term models have better results plus I did have a couple of enlarged lymp nodes, another round of chemo f5u and something else every 2 weeks for 8 treatments 09-12/12. ended up getting neulasta with this round due to white cell count. I took off 3 months for surgery but i only left work once during all the chemo and it was a slow day anyway. Alot of people would not have known unless they knew. The second round was starting to wear on me but i felt i did real good thru it all. It took me about 3-4 months to feel really recovered from last year. These days I feel pretty darn good. Overall energy might be down a little but not much, ( and I am getting older anyway ). Today was in the upper 80's and I went for a 25 mile bike ride from 1030-1245, ate then pushed the lawn mower around for over an hour and I still feel good.

diet is different. I try to stay away from gluten, dairy, fatty foods, and sugar, things that are hard to digest. I chew a lot better and eat slower. I can still eat a pretty fair amount, but I am not a dumpster like I used to be. I am not a nazi about it, I have aleast one sweet treat a week, sometimes 2 and if i go to an italian resturant I will not worry one bit about eating bread and pasta, but during the week I am really good about it. 1-2 cups of coffee a week vs the half a pot a day. Every one is different on this. One person i read on this board was 10 years out from his cancer, eats a crappy fast food lunch and a good dinner. What ever works and feels good for a person.

Having your head in a good place is probably most important. Lots of emotions and thoughts flying around in it. If you can get a mindfullness class or coach it would probably be benificial. The wife and I did gratitude lists almost every day. Im gratefull for the sun on my skin, the conversation with a love one, a good deed I did for someone else. Dont forget to live in the moment and appreciate what is around you.

If you decide to have the surgery contact me and Ill give you more details of what to expect, or even if you just want to know anyway. Make sure you know why the doctors are recommending surgery, sometimes they do not explain the why part very well. Did you get a second opinion. We ended up using the surgeon who we had the second opinion with.

Yes I would be talking to Alan right now. It is hard to remove body parts that seem to have no problem. It would be awesome if they could set you up on a monitoring program say like a scope every 6 months or something. It would still be a lot cheaper than surgery. If you do not choose the surgery I would make sure you have a good diet in place, an exercise plan and if you choose an alternative therapy make sure you are happy with it. If it or the person doing it gives you stress or does not make you comfortable move on to something else. There are a lot to choose from and everyones opinion about which ones you choose or which foods to eat are different it seems like. You need to be comfortable and feel good with your plan.

read the summers books, Denise Desimone  From Stage 4 to Center Stage is a good this is my story. Read alot. Hopefully you will not get as confused as i did.

Listen to peoples opinions and advise and wiegh it carefully but ultimatley this is your decision to make with input from spouse and children. Reach down into your heart, pray meditate, what ever you do to help you through these trying times. It is hard but you will get thru it. Im a mechanic not an english major, so if you need clarification on any thing or more info contact me and I will try to answer the best I can.

                                              Best Wishes   Bobby                                                                              

EGBAR12 said:

Congratulations Faith

Hi Faith,

My name is Bobby, Male and 48 at diagnoses. diagnosed 2/22/12 tumor at ge junction. Taxol and carboplatnium along with radiation 04-05/12, unfortunately my tumor was still there, but on the bright side there was no metastasis. Minimal invasive esophagectomy 06/18/12 at Duke University Hospital where I also ended up with a clot in my leg ( i was walking more than they required and it still happened, cancer and surgery put you at a higher risk for it ). and as a bonus because I was young and healthy and thier long term models have better results plus I did have a couple of enlarged lymp nodes, another round of chemo f5u and something else every 2 weeks for 8 treatments 09-12/12. ended up getting neulasta with this round due to white cell count. I took off 3 months for surgery but i only left work once during all the chemo and it was a slow day anyway. Alot of people would not have known unless they knew. The second round was starting to wear on me but i felt i did real good thru it all. It took me about 3-4 months to feel really recovered from last year. These days I feel pretty darn good. Overall energy might be down a little but not much, ( and I am getting older anyway ). Today was in the upper 80's and I went for a 25 mile bike ride from 1030-1245, ate then pushed the lawn mower around for over an hour and I still feel good.

diet is different. I try to stay away from gluten, dairy, fatty foods, and sugar, things that are hard to digest. I chew a lot better and eat slower. I can still eat a pretty fair amount, but I am not a dumpster like I used to be. I am not a nazi about it, I have aleast one sweet treat a week, sometimes 2 and if i go to an italian resturant I will not worry one bit about eating bread and pasta, but during the week I am really good about it. 1-2 cups of coffee a week vs the half a pot a day. Every one is different on this. One person i read on this board was 10 years out from his cancer, eats a crappy fast food lunch and a good dinner. What ever works and feels good for a person.

Having your head in a good place is probably most important. Lots of emotions and thoughts flying around in it. If you can get a mindfullness class or coach it would probably be benificial. The wife and I did gratitude lists almost every day. Im gratefull for the sun on my skin, the conversation with a love one, a good deed I did for someone else. Dont forget to live in the moment and appreciate what is around you.

If you decide to have the surgery contact me and Ill give you more details of what to expect, or even if you just want to know anyway. Make sure you know why the doctors are recommending surgery, sometimes they do not explain the why part very well. Did you get a second opinion. We ended up using the surgeon who we had the second opinion with.

Yes I would be talking to Alan right now. It is hard to remove body parts that seem to have no problem. It would be awesome if they could set you up on a monitoring program say like a scope every 6 months or something. It would still be a lot cheaper than surgery. If you do not choose the surgery I would make sure you have a good diet in place, an exercise plan and if you choose an alternative therapy make sure you are happy with it. If it or the person doing it gives you stress or does not make you comfortable move on to something else. There are a lot to choose from and everyones opinion about which ones you choose or which foods to eat are different it seems like. You need to be comfortable and feel good with your plan.

read the summers books, Denise Desimone  From Stage 4 to Center Stage is a good this is my story. Read alot. Hopefully you will not get as confused as i did.

Listen to peoples opinions and advise and wiegh it carefully but ultimatley this is your decision to make with input from spouse and children. Reach down into your heart, pray meditate, what ever you do to help you through these trying times. It is hard but you will get thru it. Im a mechanic not an english major, so if you need clarification on any thing or more info contact me and I will try to answer the best I can.

                                              Best Wishes   Bobby                                                                              

 

 

Hi Bobby, I am 46 and have recently been diagnosed with EG junction cancer, stage 2 with no lymph node involvement. I will start chemo/radiation next week. Then after 6 weeks of cisplatin/5fu and radiation (28 treatments), I have been referred to Duke University and I am just curious who your surgeon was and would like to get more information! 

Thanks,

Tammy

I am being closely monitired after a complete response to Chemo and radiation.  I was scheduled for a Minimally invasive esophagectomy and opted to have endoscopic biopsy for now which has come back negative for cancer.  So far all tests are saying no cancer.  I pray I am making the right decision.  I am eating well and my quality of life is good and my research indicated that the percentage rate is not that high for no recurrence if one does have surgery.  It is a very individual choice and one that should not be made lightly.  My surgeon isn't really pleased with my choice but understands my making it.  I will be seeing my oncologist to get his opinion within a few weeks.  I am taking a supplement called Beta Glucan which helps with the efficacy of chemo and radiation as well as fighting against EC.  Also taking a mushroom extract immune builder.  These mushrooms are used in Japan as an alternative to chemo.  I believe that the western medicine of chemo (cisplatin and taxol) along with radiation and the herbal supplements I'm taking are all working to keep me cancer free, for how long I am not sure, but there are no guarantees with cancer.  Has anyone here done something similar?  If so I'd like to hear from you.  Wishing everyone here all the best

Stephanieh71 said:

Esophagectomy

Hi,  I am scheduled to have an Esophagectomy on March 8.  My surgeo ghn just informed me that he will be doing the surgery jointly with Dr. Bilmoria at northwest community hospital.  I saw that your husband also had his surgery with Dr Bilmoria.  Is there any advicd or informative that you can give me that would be helpful.  This was very sudden - I just found out last week and was just told yesterday that my dr will be doing the surfet with dr Bilmoria.  I  extremelh nervous  - any advice would be really appreciated.  Thank you.

Hello Stephanie,

RKMikulski hasn't been on this site in 9 months (May 2017) and will most likely never see or respond to your question.  If you click on the person's name, you go to their "about me" page. You can see when they were last on this site.  From there, you can also send them a private message which will show up in their personal email mailbox.  There's a better chance that they will see this and respond to it than your post on this thread.  If you actually want input from this person, I'd suggest doing that.

Best wishes & good luck with your surgery,

Ed