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Esophagectomy after complete response

Faith517
Posts: 4
Joined: Jul 2013

Hello everyone.  I'm a 53-year-old female and I was diagnosed with stage 3 EC with nearly 2 in. tumor just above the ge junction in early April of this year.  I have undergone 2 chemo sessions of Cisplatin & 5-day 5FU treatments each session and 25 radiation treatments (simultaneously).  New PET scan indicated "no evidence for metastatic disease" followed by endoscopy / biopsies showing NO CANCER / complete response!!! Laughing Nonetheless, my thoracic surgeon, oncologist and GP all stronly suggest that I have a minimally invasive esophagectomy done (which is scheduled for August 5th).  

I am new here and am respectfully requesting advice re. my current situation.  Has anyone here had a minimally invasive esophagectomy done, and if so, what was the outcome?  What is your quality of life after said surgery?  Should I have the surgery?

Thank you!!

 

paul61's picture
paul61
Posts: 1106
Joined: Apr 2010

You will find many survivors here who have had an esophagectomy after being diagnosed with esophageal cancer. Completing the tri-modal treatment approach; chemotherapy, radiation, and surgery is your best chance at a long term remission from this disease. In all the cases that I am personally aware of where people have chosen not to have surgery after receiving an NED scan report, the cancer has returned. That is not to say that there are not some survivors out there that did not have surgery and are still NED; but the odds of long term remission are greatly improved with surgery.

This surgery is MAJOR surgery and the experience of your surgeon and the facility that you choose for recovery are critical.

You did not mention where you are receiving treatment, I hope the surgeon and location you are considering is at a major cancer center that does many of these surgeries. Locations like University of Pittsburg Medical Center, MD Anderson Cancer Center, and Sloan Kettering Cancer Center are leaders in this form of surgery and can give you the best chance of a positive outcome and rapid recovery. Be sure to ask, “How many of these surgeries do you do annually and what are your outcome statistics?”

Life changes post-surgery will include:

- The need to eat smaller and more frequent meals

- The need to sleep on an incline to avoid gastric reflux

- Many of us have sensitivity to foods that are high in sugar content

- Many of us need to rest for a while (30 minutes) after eating to allow our new digestive system to accommodate the food moving through our system. Not doing this can cause abdominal discomfort

Most people report a two to three month recovery period after an MIE before they can return to their normal daily routine. Of course recovery time is in great part affected by the survivor’s general health profile prior to surgery. Most of us lose around 20% of our body weight after surgery and it takes some time to gain weight back. Most of us do not gain all the weight back we lost.

I would once again encourage you to have the surgery. It is your best chance at a long term remission.

Best Regards,

Paul Adams

Grand Blanc, Michigan

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Three Year Survivor

Sally.L
Posts: 38
Joined: May 2012

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

 

Have you had a 2nd 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 4th 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
Posts: 4
Joined: Jul 2013

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!

Smile

RKMikulski's picture
RKMikulski
Posts: 34
Joined: Apr 2013

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
Posts: 37
Joined: May 2012

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

callerid
Posts: 99
Joined: Dec 2012

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

ebawa
Posts: 37
Joined: May 2012

 

Hello Callerid,

I juice organic carrots, celery, granny smith apples, strawberries and blackberries.  You can get 10lbs of organic carrots at Costco for about $4.95 and I go to a local produce store to get my other organic fruits and vegetables.  I read a book the Gerson Therapy that just calls for organic carrots and granny smith apples.  My Oncologist told me to add blackberries, a nurse told me to add celery and I add the strawberries when I can find freash organic.  Every once in a while I will add grapes, blueberries and even mango.  I juice every day so it helps to add variety.

I don't eat any white bread, or processed sugar and limit red meat.  I try to drink or eat more fruits and vegetables than meat most of the time.  I now eat more fish than beef.   However, I still have a small steak or a hamberger from time to time.  I feel that like most diets, if you are good most of the time you can be bad occasionally.

Take Care,

Alan

 

JKGulliver
Posts: 82
Joined: Apr 2013

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.

Heeran's picture
Heeran
Posts: 173
Joined: Aug 2011

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

 

Faith517
Posts: 4
Joined: Jul 2013

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

ebawa
Posts: 37
Joined: May 2012

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

 

Heeran's picture
Heeran
Posts: 173
Joined: Aug 2011

Hi Alan, this is Heeran.  I came across the Gerson Therapy a month ago and wow, there is really something to that.  Amazing case studies and I watched the video and read parts of the book and yes, it also cures EC as well.  I think I might have bee toon scared to have my mom do that versus the chemo/radiation/esophagectomy but now she is so miserable w/ continuous chemo that she mentioned quitting.  Can I call you to see how you do the h2o2 therapy?  I know there are different methods of bathing w/ it, iv, drinking h2o2 in distilled water.  

Faith517
Posts: 4
Joined: Jul 2013

Hello again, Alan.

Kindly contact me at vida.halsey@gmail.com.  My surgery has been postponed/cancelled by what I believe to have been a 'divine intervention'.  I have many questions for you.

Thank you.

Vida 

ebawa
Posts: 37
Joined: May 2012

Hello Vida,

I sent you and email and would be happy to talk to you.

Take Care,

Alan

EGBAR12
Posts: 1
Joined: Aug 2013

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                                                                              

 

 

Tkincaid2
Posts: 12
Joined: Nov 2013

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

 

dwhite0002
Posts: 130
Joined: Jan 2010

Hello,

 

I am a 7 year surivor of Stage III Squamous Cell. I was 32 when I was diagnosed. I was not a smoker, no family history, etc. I was told from the beginning and all throughout: you WANT SURGERY. My tumor was not visible following chemo and radiation. However, we went ahead with the esophajectomy. I was told if there was even a trace cell it could reappear, and it is not a chance to take.

I wish you well.

 

Peace,

David

Hillsboro, OH

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