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SURGERY RESEARCH for Brendon - Please post if you have had surgery to remove your esophagus - Please help!

Susie_Brendon's picture
Susie_Brendon
Posts: 141
Joined: Feb 2011

To everyone -
I'm doing a little research on the Minimally Invasive Surgery...or other surgeries that are available. Please respond and let me know the following:

1. What stage your cancer (or your loved ones) was in?
2. What treatment you had prior or after surgery?
3. What surgery you had?
4. What complications did you endure with your surgery?
5. Whether or not they removed your entire esophagus?
6. And how long has it been since you had your surgery?

As all of you know...time is of the essence when making a treatment decisions. Brendon is just about finished with his first week of raditation and chemo... We have to make some choices!!!

Thank you in advance everyone for your input!!!

Susie

P.S. William - I know some of the answers to these questions about you...but would appreciate if you could still answer my questions. I have contacted Dr. Luketig and will be having a conference call with him. I just want to make sure I have as much knowledge as possible on all the different surgeries available. Thank you!

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Hi Susie, I was diagnosed in Nov.2007 with stage 111 T3N1. I had pre op chemo only-no radiation. Ivor Lewis surgery was in May'08. I spent 13 days in the hospital. I didn't have any serious complications. The ivor Lewis is rough. My incision was down the front and also around the shoulder blade under the arm in the back. I had 10 inches of the esophagus and 1/3 of my stomach removed.Because of a node testing positive, I started chemo again after surgery, but because of complications, it was stopped. All my scans since then have been good.

I did very well with the surgery, but knowing what I have learned,I encourage you to please look into the MIE. Recovery is a lot shorter and not as painful. It's really good that you are looking at all the options. I wish I had seen this site before my surgery.

We all have to adjust to new eating habits, sleeping elevated, and maybe some dilations,
( I'm going for my 4th soon), but it was worth it to feel as good as I do now-NORMAL!

Good luck and my prayers are with you, as you continue looking at all your options,
Sandra

cmn412
Posts: 71
Joined: Aug 2010

Susie,

I know how hard it is to walk this walk right now, and I do not want or like to give advice to anyone but I would strongly recommend that if you can have the surgery DO have it. If you don’t and it comes back you may not have a choice.

I know how hard it is but both my brother and I had the surgery and we are doing fine. Yes he has had some problems with stretching and stents. But he is alive.

I did not have problems except my body did not want to wake up (bowels) and start working. But all is well now. You do have to learn how and what to eat. I eat to much sometimes and I lose it a lot.

Everyone is different and you can not say what will or will not happen, but we can say that this is the best chance we have to be cured. Please don’t let your husband gamble with his life. Take the best chance at survival he has.

I had the MIE in Feb 2010 they took most of the esophageal and 60% of my stomach. My brother had the other one where they opened up his chest. His surgery was in April 2010. Because we were both going through the same thing at the same time and I am in North Carolina and he in PA I didn’t get all the facts sometimes.

Any ways
God bless

Callie Newman
09/02/2009 T2N0M0 – Stage IIA
09/2009 -11/2009 Chemo Cisplatin and , 5 FU
02/05/2010 MIE at Duke Medical
Dr T. Pappas and Dr M. Onaitis

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hey Susie
High five girl! You are doing great with this research. I am glad to hear that you have spoken to Dr. Lukeitch. He is one of the best in his field. There are many other survivors who have had this surgery.
I know they will be responding to you. From what I have learned, the MIE is the way to go. Good luck with your research. Hugs to you and Brendon. We are all praying for you.
Tina in Va

Susie_Brendon's picture
Susie_Brendon
Posts: 141
Joined: Feb 2011

Even though I sometimes don't understand everything I read...I'm soooo much more knowledgeable about EC than I was on Feb 1st when Brendon was diagnosed. The more we all know, the better choices we can make for our loved ones. Thanks for your continued support and prayers!
Susie

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello Susie and Brendon
Thanks for all of your recent updates. Sounds like you guys are really on the ball! I wanted to let you know of the tobacco company who makes the mint flavored tobacco. It is called, Oregon Mint Snuff Co. Plain and simple huh? You order it online. Comes in mint wintergreen and spearmint flavors. My husband chewed for over 30 years. This stuff works and it does not have the tobacco or nicotine. Hope this helps. Keep on keepin on! We are cheering you on. God bless and keep in touch.
Tina in Va

linda1120's picture
linda1120
Posts: 438
Joined: Oct 2010

1. What stage your cancer (or your loved ones) was in? Stage III
2. What treatment you had prior or after surgery? Cisplatin & 5fu 2 treatments over 2 months
3. What surgery you had? MIE at Oregon Health & Science University Hospital, Portland, Or
4. What complications did you endure with your surgery? husbands complications were due to his heart issues (went into A-Fib) he also had pneumonia after surgery
5. Whether or not they removed your entire esophagus? Yes, the entire esophagus was removed and the tumor had completely shrunk from the chemo & radiation. All 20 lymph nodes came back clean!
6. And how long has it been since you had your surgery? Jim's surgery was January 5, 2011

The MIE is the way to go. If Jim had had the Ivor Lewis he wouldn't be alive today. His heart would not have been able to handle it. Be sure and go to a cancer center that does a lot of MIE's.

God Bless Susie! I thought of you tonight as Jim's feeding tube was clogged over and over! The coke finally did the trick.

Linda

Susie_Brendon's picture
Susie_Brendon
Posts: 141
Joined: Feb 2011

Good morning everyone!!!!
Thank you sooo much for the replies I have recieved so far. I have a couple of weeks to make one of the biggest decisions in Brendon's life. He told me yesterday that he counts on me to find the BEST place and BEST surgery for him. He's not much into reading about his disease or doing research. Luckily for me...I thrive for knowledge, so I know he is in good hands.

Please tell me more because I have read several places that after surgery, you can not lie flat anymore?? What's this about? and Why?

Linda - you made me laugh first thing this morning! Thank you!!! I'm glad the coke did the trick! Brendon actually got a new feeding tube pump...it's a "two-liner"...(or whatever you call it! lol) Pumps water every two hours to clean it while doing the feedings..so hopefully, I won't be pulling my hair out anymore!

To those reading this string of posts that haven't let me know about your surgery choice, please let me know. I am counting on ya all!!

Happy Friday everyone!! The assignment for today is to laugh!

Susie

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Susie, I don't know the medical terms; but there is a flap in the lower esophagus that keeps acid from coming up into the throat. This is removed with surgery. By sleeping elevated, it keeps the acid from coming up. I have a 7 inch wedge and a pillow. AS long as I stay on it, I have no problem. If I roll off, I'll be in the recliner the rest of the night. Some people have invested in beds that can be raised.
Other things help--Like not eating anything for a few hours before going to bed, and learning what foods to avoid.
This is just one of the life changing things, But it is an easy adjustment.
Prayers, Sandra

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

Susie,

I am a 62 year old male. I was in excellent health when I went to my primary care physician for what I thought was just recurrent acid reflux. I was sent for an endoscopy.

1. I was diagnosed as Stage I later changed to Stage IIB
2. I had no treatment prior to surgery (they originally thought I was Stage I until they evaluated the pathology from surgery)

3. I had Ivor Lewis surgery
4. My major complication was that I developed an infection in both surgical incisions in the hospital. This extended my hospital stay by two days while they treated the infection with IV antibiotics. I was in the hospital for 12 days in total, with three of those days in the ICU.

5. Three quarters of my esophagus was removed (I had a tumor at the gastro-esophageal junction)

6. It has been 15 months since my surgery.

My most significant issue was that since I did not have treatment for my tumor prior to surgery and active cells were found in the post surgical pathology (The reason for my change in Staging from Stage I to Stage IIB) I had to do six rounds of chemotherapy while recovering from surgery. This extended my recovery time significantly.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

Susie_Brendon's picture
Susie_Brendon
Posts: 141
Joined: Feb 2011

I appreciate your success story with the Ivor Lewis surgery! It's so helpful to get everyone's insites on such a HUGE decision! Almost overwhelming at times. God Bless.
Susie

skyhawk
Posts: 19
Joined: Nov 2009

I was dx 4-15-08 at the age of 43. I was a firefighter at the time of dx and in great physical shape. At dx, I was T3N1M0. I decided to seek a 2nd opinion and travel to MD Anderson in Houston. I was prescribed 5 weeks of chemo along with 28 days of radiation before potential surgery. I done so good with chemo, I opted for 2 more weeks of it.

I had a repeat CT/PET after 5 weeks with nothing showing. Now, he gave the choice of MIE, or IL. He told me the MIE was easier, but I can no doubt see more witht he IL and will take out more nodes with the IL, but it is your choice. I told him I was in shape, so the IL didn't scare me, so lets do it.

8-12-08, we done the IL. I was out of surgery at 4:30 that afternoon, and at midnight, I was up walking. I done so well, I never was in ICU, etc. I got out of the hospital onthe 8th day. I have had no complications at all. My path was clear with 1 node of 44 showing scattered cells. He then showed me a study from MDA that post op chemo had no benefit other than to weaken your immune system either further, so I opted out of that. That is what the surgery is for, to take care of the few remaining cells if there are any. Now if there are floating cells, then they are floating cells. I was doing no more chemo after surgery after I read the study.

On Nov 9, less than 3 months after IL, I was back full duty as a firefighter and 8 months after IL, I hiked 50 miles ont he Applachian Trail with a 35lb pack on my back. I now don't ever think about the surgery, because I look back and it seemed so simple to me. I now can eat a full 2 plates of food, 2 hamburgers, and do whatever I want to. NOW I KNOW EVERYONE DON'T ENJOY THESE RESULTS.

I know that I am not out of the woods by any means, but I am enjoying life as before and seldom think about cancer anymore. I have decided if it shows its head again, I will deal with it then. I go back to MDA April 15 for scans and that is also my 3 yrs since dx. If my scans are good, then we will only scan yearly from here on.

That is my story and I hope it helps you make decisions. Just remember, there are lots of complications with the IL, but I had a very experienced surgeon and had no complications at all.

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello skyhawk
Just wanted to thank you for posting your wonderful success story. Praise the Lord! Best of continued success to you, and thank you for being a firefighter! God bless and peace be with you.
Tina in Va

GerryS's picture
GerryS
Posts: 238
Joined: Aug 2010

Susie
Diagnosed at age 57, Stage II, N1.M0 Feb. 25, 2010
Surgery in March "10
followed by 2 months of chemo, cisplatin and 5FU
Ivor Lewis surgery at Mayo MN.
Surgery required several (4-5) months of recovery. Loss of 60+ lbs. Some back pain at incision but getting less all the time. Eating very well now, slow and steady, weight has stabalized.
Removed entire esophagus
CT scan Aug '10 clean NED
CT scan Feb '11 clean NED

Best of luck to you and you have my prayers.

Gerry

cjmac49's picture
cjmac49
Posts: 110
Joined: Jan 2010

1. My cancer stage. T2N0M0
2. Treatment you had prior to surgery? Chemo (cisplatin 5FU) 30 radiation treatments
3. What surgery you had? Minimally Invasive Esophagectomy (MIE) at Beth Israel Deaconess MC in Boston
4. What complications did you endure with your surgery? None noteworthy.
5. Whether or not they removed your entire esophagus? All removed sue to cancer and extensive Barretts
6. And how long has it been since you had your surgery? 940 days.

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Susie,
I was diagnosed Stage III with one positive node, T3N1MO in July, 2009.
I had Cisplatin and 5 FU and radiation before Ivor Lewis surgery at St. Joseph's Towson MD.
Surgery was 12/8/09. Had a positive node found during surgery everything else was destroyed by the radiation and chemo. Had post op chemo of Taxotere. My complication was lung damage from the radiation and surgery. Does not happen to many people. Now I have asthma and COPD and have to do inhalers. So I am having clear scans and now on an every 6 month schedule and it has been a year and 3 months. I can eat almost anything, just not extremely spicy stuff. My hubby is always kidding me about how much I eat. I am now up 137 lbs and would recommend surgery to anyone who can have it. I consider myself one of the very lucky ones and just wish it could be for everyone. take care,
Donna70

Susie_Brendon's picture
Susie_Brendon
Posts: 141
Joined: Feb 2011

I LOVE LOVE LOVE your reply.... 940 days!!!!!
Congrats for being a 940 day cancer survivor!!!!!!

Thank you for your information! I'm keeping notes on all of this and we will make the big decision this week as to what surgery we want...and where we want to go!!

SUSIE

Susie_Brendon's picture
Susie_Brendon
Posts: 141
Joined: Feb 2011

Okay...I commented back to you...BUT...I guess I hit the wrong reply button...

Just call me a newbie still on this site!!!

Scroll down!! You will know I was talking to you!!!!

cindyhils's picture
cindyhils
Posts: 31
Joined: Apr 2010

hey guys,
1. My stage was IIa
2. I had two treatments of cisplatin AND 2 treatments of 5-FU fanny pack, along with 28 radiation treatments, no postop chemo
3. I had THE surgery at mayo in rochester./Transhiatal esophagectomy
4 I had an unusual complication 4 days after surgery.. i had a vein wrapped around my new stomach cutting off circulation and i had to have another emergency surgery to figure it out.
5 my esophagus and part of my stomach with 12 lymph nodes were removed. all were cancer free.
6. I was diagnosed august 09 and had surgery dec. 09 so it has been almost 15 months since surgery.
good luck i know you are getting a lot of info to process but its great you are taking it all in.

cclambert
Posts: 32
Joined: Dec 2009

1. What stage your cancer (or your loved ones) was in? T1N1M0
2. What treatment you had prior or after surgery? No treatment prior to surgery,
after surgery I had 4 rounds of Cisplatin and 5 FU
3. What surgery you had? Open Transhiatal Esophagectomy at MD Anderson
4. What complications did you endure with your surgery? I developed pnuemonia the
day after surgery, was on a vent for 3 days in ICU
5. Whether or not they removed your entire esophagus? They removed 2/3 of the
esophagus and 1/3 of the stomach, along with 23 lymph nodes
6. And how long has it been since you had your surgery? Surgery was on Dec 21, 2010
I feel great, can eat anything I like, I have more energy than I had when
when I was younger. Life is good

Susie_Brendon's picture
Susie_Brendon
Posts: 141
Joined: Feb 2011

Ahhh such a wonderful read!!! I'm so glad that you are doing so well!!! It's refreshing to read good biographies like this!

Susie

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Hi Susie and Brendon, I was reading all the different answers and have to admit I have shed a few tears. As you can see, everyone goes through treatment and surgery differently; but the survivors of this desease are growing. It's up to us as suvivors to get the word out for people to not ignore what is sometimes vague sypmtons.
Brendon is so fortunate to have someone that wants to know all the facts. EC is so much a part of our lives. It touches all our family, and knowledge is so important.
Praying for you both,
Sandra

nancyann3
Posts: 196
Joined: Mar 2010

Hubby is just out of surgery, so probably not much help, but thought I would tell ours.

Diagnosed 2/2010 stage T3N1M0
Three seperate rounds of chemo and 28 rad treatments
Surgery was cancelled early on due to blood clots and poor performance during chemo.

We have not had what seems like the "normal" treatment prior to surgery, but we made it after a long year.

Surgery was on feb.16th 2011 Ivor Lewis, but no broken ribs. So far incisions have healed well. No problems with voice. It reall has amazed me how fast he has healed after all the chemo and rad he had. His set backs so far are hydration and blood loss. He has always been hesitant with everything, so that has caused him some problems with eating and hydration. But seems to be doing better now. He has no problems swollowing right now. jtube is a life saver to get calories in.

Out of 17 lymph nodes removed, 4 were positive, so we dont know what the plan will be next. Just working on recovery for now. Like I said we are so close out of surgery that I cant give you much info on that, but the best advice I can give on treatments is staying hydrated and get calories in. If you can go with the MIE thats great.

Take care
Nancy

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hello Nancy
So glad to read your recent update and reply. Praise the Lord and may he continue to bless you and your husband with his recovery. Take it slow and easy. Slow and easy wins the race my friend. Glad to hear he has the jtube and is doing fairly well with the recovery. Praying for you both. Update when you can. You have done and are doing a great job Nancy. Hugs to you both!
Tina in Va

jpturn4's picture
jpturn4
Posts: 21
Joined: Feb 2011

Hi Susie

THANK YOU so much for posting this question on the format you used, I have also been pro-active in my research for my husband but LOVE the way you managed to ask the right question prompting such a great post with so many positive replies.

Paul is T3N3 and it's hard on one hand to read all these great inspiring replies, when they are ALL lower numbers, but at 44 fit and strong, we have to take comfort so many great reports. However if anyone is aware of an inspiring story with simular staging, I cannot even express how great it would be to hear from them.

We have also been in touch with Mr Luketich and are waiting for Paul to finish his 4 cycles of chemo before what next......to be honest, I think we are at the point where it's a no brainer for us. IF Paul can have the MIE we will go to Pittsburgh and utilize the endless offers of support from friends to help with the kids while we go. When it is literally life or death, a small matter of 4 kids etc just can't stand in the way.

Please let us know what you decide, where you go and how it goes.....thinking of you both.

Julie

Susie_Brendon's picture
Susie_Brendon
Posts: 141
Joined: Feb 2011

Do NOT get discouraged!!! Paul, like Brendon, is young, strong, and healthy!! WE WILL GET THROUGH THIS!!! We have three girls so we know what it's like to struggle the children around...what's worse for us is that the girls and I still are living 3 hours away from Brendon (long story short - need to keep my job here for FMLA and dual insurance)...so we also are juggling the distance...so if we can do it...SO CAN YOU!!!!

We are in the final decision making matters of what surgery will be the best for Brendon. We sent off a few final questions today...you are right...it's a huge decision. I will be sure to let everyone know what choice Brendon finally makes.

I will say extra prayers for Paul, you, and your children. Just remember that any statistics you read are probably out of date...so don't let them scare you. Medicine and technology are improving daily.

Hugs to you,
Susie

Yovana_survivor_since_2010's picture
Yovana_survivor...
Posts: 11
Joined: Feb 2011

Hi Susie,

Hope your husband is doing excellent.

1. What stage your cancer (or your loved ones) was in? Stage III, T3N1M0 @ GE junction (squamous carcinoma)
2. What treatment you had prior or after surgery? Neoadjuvant Chemo. Consisting on Oxaliplatin (Three rounds)& 5FU 24/7 X 5 Weeks. Radiation 5 weeks (M thr F). Had surgery on 07-28-11 at UCLA California. All clear per Path. Then, have 3 rounds of Oxaliplatin, Leucovorin, and 5FU.
3. What surgery you had? Three Holes approach. One incision on my neck, one on my tummy, and one on my back right rib.
4. What complications did you endure with your surgery? During surgery,complications was that esophagus got attached to my airway,so there was an air leakage. Blame radiation. My surgery lasted for 8 hours. I am so small, so surgeon placed my stomach on my left neck. He removed my clavicle. After surgery,my colon was sleeping still,so my colon become so swollen on day 5. Spent on the hospital for 12 days.
5. Whether or not they removed your entire esophagus? Yes with 1/3 my stomach.
6. And how long has it been since you had your surgery? 8 months
Hoping you for the best!

Yovana

wifeforlife
Posts: 189
Joined: Feb 2010

Susie,
I am related to someone that Brendon works with. I saw them last night and they told me of his condition, they spoke with me because I have some experience. My husband had/has stage 4 base of tongue/tonsil cancer. the surgery is different, but the chemo, radiation, feeding tubes etc are all the same.... I have sent you a friend request so we can speak privately if you wish. I would be happy to help in any way I can.
Take car,
Wifeforlife

Susie_Brendon's picture
Susie_Brendon
Posts: 141
Joined: Feb 2011

Yovana,
How are you feeling 8 months later?? Sounds like you had a few more roadblocks than you would have liked after surgery, so I hope this message finds you feeling better and stronger.

Thank you so much for your reply...the more information we have on the various surgery's the better decision we will be able to make.

Keep us posted on your update!!!

Susie

Yovana_survivor_since_2010's picture
Yovana_survivor...
Posts: 11
Joined: Feb 2011

I am working full time since January. I can eat everything including spicy food, but small amount. I eat like 4 or 5 meals a day. My weight is stable. After surgery I only lost 4 pounds and I got it back in a month 2 months later. I am not 114 pounds. I am 5.1'

Thank you!

Hope your husband a quick recovery!

Yovana

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