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Recently diagnosed, surgery coming up.

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

Howdy :) My name is Greg, I was recently diagnosed with stage 1B Adenocarcinoma. I'm set up with Dr. Ninh Nguyen at UCI for a laproscopic Ivor-Lewis Esophagectomy. First surgery is 8/27, 2nd (main one)is 8/29. Has anyone had this procedure? Would really love to chat with someone about what to expect afterwards. Thank you very much :)

Greg

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

sorry about the double post!! Feel free to delete one :) Thanks!!

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

Thanks William!! That's some GREAT info you provided me, I do appreciate it! I tried to watch some of the vids, but I had to turn them off....LOL. I'm a bit...squeamish. I shot you a PM and will formulate some questions for you and give you a shout if that's OK :) Thanks again!!

Greg

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

Hi Greg:

I was Stage 1a and had a Minimally Invasive Esophagectomy last September, and I’m doing great. I only had 1 surgery so I’m curious what your 1st and 2nd surgeries are about. But you asked what to expect, and with the top notch surgeon you have I think you can probably expect good things – a bumpy ride during recovery and you may find it’s 2 steps forward and 1 step back as you go forward, but it's generally good.

I’m just shy of 11 months post-op and I eat everything I used to eat, just not as much at a sitting because my stomach is smaller than it used to be, so I also eat more often. I’m 6’ 0” tall and pre-surgery I weighed about 195; within a month after the surgery I weighed 175, and my surgeon said I probably wouldn’t be gaining it back – and he was right. I’m actually at a really good weight now so that’s no big deal, but the nature of your new digestive system (we refer to our stomaphagus, here on this board, lol) is that you will digest your food differently than before - in my case everything tends to go through me faster than it used to. For a few months after my surgery I had lots of learning to do with respect to eating, and there was a lot of diarrhea to deal with - very common. But I learned what to eat and when, and my guts learned how to deal with having been reconfigured, and we got to know one another and things settled out just fine.

One measure of my recovery is that I rode my bicycle a lot this summer while training for a big cancer fundraiser ride, and a couple of weeks ago I did the ride: 191 miles in 2 days. It wasn’t easy, but then again it wasn’t easy for most of the 5,500 riders – I had sports drinks and sports eats that my surgeon (a big runner himself) recommended, but my point is that I was able to do it. When I crossed the finish line I was beat but elated, because I was able to do it. I friggin' did it!

You and I and Cap’n Dave and a very few others on this board are among the luckiest SOB’s around, for having been diagnosed early at Stage 1. The surgery is the same for you and me and Dave and William, although Dave and I didn’t need any chemo or radiation (do you?), so maybe our recoveries were easier than for some others. It isn’t always easy, but if you follow the advice of your medical team – maybe especially regarding exercise and eating – you should do just fine. You have cancer (doesn’t it suck to have to say that?!?) and you’re going to have major gastric surgery, but there is a good life on the other side of it for most of us who were lucky enough to be surgical candidates.

So good luck to you, and please keep us informed. This is an amazing group of some of the best informed, most supportive and compassionate people I’ve ever been involved with. This board made my recovery much easier, but it’s a 2-way street and we need to know what’s happening if we’re to offer advice and support.

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

Lina71912
Posts: 15
Joined: Jul 2012

Hi Greg and Bob,

How did you find out about your cancer? What were your symptoms? What type of test did you have? For my mother she was in stage III when she has difficulty swallowing. I would like to know the symptoms for stage I so me and my family members would know what to look for because my mother and my grandmother have EC.

Thank you!

Lina

BobHaze's picture
BobHaze
Posts: 159
Joined: Sep 2011

Sadly, there are no symptoms when you’re at Stage 1. In my case, I had reflux for many years and when I finally told my primary doc about it she immediately sent me to a gastro doc. I was 55 and hadn’t had a colonoscopy yet so he scheduled it, and when I woke up from that he told me he had done an endoscopy as well, to check on the reflux. He found Barrets Esophagus and put me on a schedule of repeat endoscopies. Last summer he found an area in my lower esophagus that he thought looked :ulcerated” so he took biopsies and it turned out to be adenocarcinoma. So I was diagnosed during “routine surveillance.” The next step is an Esophageal Ultrasound (EUS), which said I was Stage 1a, and it was off to the surgeon.

As far as I know there’s no way to know you’re at Stage 1 unless they physically look, which is why the vast majority of EC patients don’t know they have it until they’re Stage III or IV. My surgeon told me the esophagus is like the uterus, in that it’s designed to expand and contract. So when a tumor grows in the esophagus it just expands to allow food to pass, until one day the tumor is so big it can’t stretch enough, and the food gets stuck so you go to the doctor and you get bad news.

I’m no doctor, but from everything I’ve learned about this beast it’s very important – vital, even – for anyone who has GERD or frequent heartburn to get an endoscopy and see what’s up. People on this board have reported their gastro doc “refusing” to do it even in the face of GERD and/or frequent heartburn, to which I say “Fire the SOB” and find a doctor who understands the seriousness of these conditions.

I’m sorry to hear about your mother, and I truly wish her all the best.

FEC,
Bob
T1aN0M0
Dx 8/3/11
MIE 9/23/11

jaycc
Posts: 133
Joined: Jul 2012

I have heard similar there are challenges on finding EC. Here is an interesting article about GERD and the relation to Sleeping disorder. As mentioned this is a specialty area, if the DOC won't do a scope, find someone who will.
sleeping disorders and GRED and Esophageal cancer.
http://www.jeffersonhospital.org/~/media/1C5457528BD846D99F2A8E42898DC735.ashx

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

Lina, I quit smoking in January, between then and June I had a couple of serious "Attacks", very painful right in the center of my chest. I didn't think heart attack, but knew something was wrong. I went to my GI doc, who ordered an ultrasound and endoscope. He was thinking maybe gallstones, hence the ultrasound. That test showed nothing, but the endoscope he performed showed quite a bit. I remember waking up from G.A. and him tell ing me how messed up my esophagus was. An Ulcer (This was probably the cause of my "Attacks") Barrett's esophagus, a hiatal hernia, low and high grade disphasia. 2 of the biopsies came back adenocarcinoma. There were no masses. After 2 more endoscopes, ultrasound, and tons more biopsies they determined it to be aggressive adenocarcinoma, 1 biopsie showed submucosal stage 1B.

Bob, Dr. Nyugen has modified the surgery over the years. Where it used to be all 1 surgery, he now does a "Prep" surgery 2-10 days prior. During the first surgery he preps the stomach and installs the J tube. For me the second surgery is set for 2 days later if all goes well. By prepping the stomach he has minimized the complication of the new esophagus "Leaking".

Greg

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Greg, Like Bob said you are one lucky SOB! Thank God that you were detected so early and have access to such a great surgeon. recovering from the surgery for me was much as Bob described it for himself. I am a type "A" kind of person, so when the Surgeon said get three laps around the nurses station twice a day the first day after surgery I of course did four laps and the next day five and so on so that by the time I was discharged on the seventh day after surgery I was doing over two miles a day. I was back at work full time without restriction exactly two months after surgery. My drive to get back to my full active life did cost me though. I developed a hernia on my abdominal incision (I had the THE procedure). This required another surgery the first of June. I am still slowly building back up to my normal activity level and will be back to unrestricted activity i.e. skiing etc.. after Christmas. So don't go full speed ahead when you get cleared to resume normal activity just take it easy and build up to your normal activity level and let your body fully heal.

I eat pretty much what ever I want but as Bob said in smaller quantities. My wife and I will many times share a meal. We found that tapas is a great way to eat so as not to have so much food ordered. I started out prior to surgery at 210 pounds and am now after both surgeries 180 pounds at just over 6 feet tall. one unexpected expense post surgery was having to buy an entire new wardrobe. I try to eat a lot of high fat foods like avocado and salmon or other fish and high protein foods.

My parting advice is this, physical conditioning going in to surgery I believe makes a huge difference in recovery and attitude is vital.

Best wishes and look forward to hearing about your successful surgery soon.

Dave

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

I am sorry to hear about you mother and grandmother. If you have GERD or heart burn or any other type of symptom get scoped! once scoped if you are diagnosed with barretts get into a research study where you are survailed and monitored regularly. This is your best shot at early detection. Remember barretts is considered a precancerous condition.

Dave

ShellyAS
Posts: 24
Joined: May 2012

Hello Greg,

My husband was diagnosed with T1b adenocarcinoma arising from Barrett's Esophagus and underwent Min Invasive surgery May 31 and June 1 of this year. He was diagnosed from routine scope for the Barrett's. He underwent 72 biopsies and all the diagnostic/staging testing. We actually found out the stage after the surgery.

It is definitely a hard surgery to go through. His lasted over 17 hours due to complications from the Barrett's and a previous surgery at 3 weeks old. He was 44 years old when he had it done so age was on his side. His biggest thing was respiratory after the surgery. His pain was controlled.

As far as eating, he is back to eating most things. He had his J-tube for approx a month after the surgery. He just has to eat smaller amounts. Sleeping is a bit of a problem. You may want to look into an adjustable bed to keep you elevated. As my husbands Dr. says "it is all about gravity now."

He will be starting back to work in the next few weeks as a cabinet maker.

Blessings

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

wow Shelly, me and your Hubby sound like very similiar cases. I hope I don't have a 17 hour surgery though!!! UGH!!! I'm very happy to hear he's progressing nicely though!!

I appreciate all the info, support, and well wishes from everyone! Tomorrow is the first surgery...so... I'll see you all in 10 days (hopefully sooner!!!)

Thanks again!!

Greg

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Best wishes on surgery number one!! We'll be waiting for good news with your upcoming post!!

~Jayme

lenlee65
Posts: 47
Joined: Aug 2012

Just want to wish you the best with your surgery. You will be fine!

Len

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

Howdy all :)

I had my surgery, 11 days in the hospital, and have now been home for a few days. I know it's a long road for recovery, but for a guy who's never really been sick...this sucks...LOL. We'll get through it, hopefully without any major complications! Thanks again for all the support and well wishes!

Greg

paul61's picture
paul61
Posts: 1169
Joined: Apr 2010

Greg,

First of all congratulations on a successful surgery!!!! I take it the pathology report was good and the swallow test was good???

You probably had a session with a nutritionist prior to leaving the hospital but sometimes when there are so many things to complete prior to discharge these things get forgotten. It will take you some time to get used to your new digestive system. You will have to begin eating very small portions and you will find that you become full very quickly. This will improve over time but initially learning to eat again will take some patience and experimentation.

I thought I would include some information that may be helpful:

First some suggestions on what foods to eat and what foods to avoid.

Click Here for The Esophagectomy Diet

Second a diet to help avoid "Dumping Syndrome"

Click Here for The Dumping Syndrome Diet

Things will begin to improve quickly after the first month. People will keep telling you to eat more, but listen to your body and take your time about finding what works best for you.

You will lose some weight initially but your weight will level out after a while.

I eat seven times a day but all my meals are small. My typical diet is:

8:00 AM ---- Two scrambled eggs and half a bagel
12:00 PM --- Half a turkey sandwich with cheese
2:00 PM --- Granola Bar with Juice
3:00 PM --- High Calorie shake with strawberry, banana, chia seeds
6:00 PM --- Dinner 4 oz of protien, 1/2 cup of vegetable, Roll
8:00 PM --- Apple peeled and cut into sections
9:00 PM --- 1 cup of frozen yogurt (my replacement for ice cream)

My rules for eating:

1. Drink very little with meals and one hour after meals
2. Eat slowly and put my fork down between bites
3. Chew at least twice as much as you used to
4. Avoid foods high in sugar content
5. Avoid foods with sauces
6. Avoid foods that cause gas (you will find a list in the esophagectomy diet)
7. Don't force yourself to eat when you are feeling full (you will just be miserable later)
8. Be careful with carbonated beverages (they will make you feel full very quickly)

As I said Greg, be patient with yourself you will be eating steak in no time!!!

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

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

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

Thanks for the great info Paul! Like you say, I know I'm going to really have to be patient with this transition. Patience hasn't been one of my life long strong suits...LOL. Like you mention though, and what I need to keep telling myself is....

1. If I push it....I'll really hate the consequences

2. If I give it time, things will eventually get dialed in.

As far as the pathology report they said the lymphnodes (22) were all negative. I believe the terminology they were using was "T1-N0" ??

Ginny_B's picture
Ginny_B
Posts: 542
Joined: Sep 2011

Good test results! Whew! Always a worrisome part of this disease. Now it is all behind you and you can move forward albeit slowly... very slowly.

Heal yourself, be patient with yourself, enjoy yourself. Keep up the good fight!

(Is that a Fire Engine you're in? I was in one of those before.)

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

HI Greg,

I just had to say HI & Congrats on doing so well so far. I like your attitude!. It really will help your recovery.

My dad was one that walked a lot of laps after surgery & was in good shape before his surgery. I think it really helps get your heart pumping, muscles moving and oxygen to the whole body, needed for healing, pain control & regaining your strength. But, you are right---you'll have to be careful to not "push it too far".

I, too am curious if you are a firefighter---my dad was a volunteer for 50 plus years. When he recovered & felt up to it after surgery, he returned to the dept light duty and drove the Tanker Truck. I think everyone has heard my stories of him before--so I won't repeat.
But hang in there Greg!
Kim

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

I'm a Process Operator/Fire Truck Captain at a southern California oil refinery. Been at it for 23 years now. I admire your Dad for sure! I'm trying to walk as much as possible, also trying to get the "Hang" of the portable backpack/pump. The sooner that becomes second nature, the more I'll be able too do.

So far the only issue is what my Doc calls a "Lazy stomach" The valve on the bottom of my stomach doesn't want to dialate enough. We are doing eurythrimiacin (sp) in the J tube every 6 hours to try to help it out. If that doesn't work, it will be an endoscope to go down and dialate it. I start my first liquids tomorrow, limited to a paltry 250ml a day because of the lazy stomach. Hopefully it kicks itself in the nutt and gets moving ...LOL.

stephikindred's picture
stephikindred
Posts: 153
Joined: Mar 2012

Glad that's over for you. Now just get through the recovery process with Paul's helpful information!
Best to you,
Steph

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

Hiya all :) Had good news from my oncologist on Wednesday, as of right now he says I warrant observation and no Chemo or radiation! WOOHOO! He has staged me at stage 1A, T1-N0. Recovery is chugging along, the only setback I'm having at the moment is issues with swallowing. My throat is really tight, and most soft foods are very uncomfortable to swallow. My Surgeons nurse says it's fairly common to have scarring from the surgery that can cause this problem. She says they'll need to dialate and stretch it out to make it easier to swallow. She also says this can take multiple times to fix :(

All in all, this means I'll probably be on the J tube a bit longer, I was supposed to get off it in 2 weeks. In the grand scheme of things, I have to just stay positive and roll with this issue. Has anyone else had this issue???

Greg

ShellyAS
Posts: 24
Joined: May 2012

My husband still has issues with swallowing. He had his throat dilated 2 times since his surgery at the end of June. His Dr. also suggested seeing a speech pathologist which they will teach him how to swallow. He said he will still need the dilations and could be needed every other week for a period of time. One of the nurses at the hospital told us another Dr. taught his patient how to dilate herself at home and sent her home with the tool. Amazing!

Glad to hear you are doing well.

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

Hi, Greg, Glad you're doing well. I have had four diations in four years. The last was better that previous, so I am not getting another unless needed. I have learned to concetrate when I eat--remembering to take small bites, and chew, chew, chew.
Three weeks ago,, three bites into eating and I realized I was in trouble. My food was blocking competely. Three hours later I went to the emergency room.This would happen on a sat. night.They gave me something to relax my esphagus and four hours later it worked. They thought they were going to have to put me to sleep, and remove it. Since then I have been fine, so I'm still not going for the dilation.
Hope you can get some releaf soon, Sandra

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

Shelly, I can't even fathom sticking something down my throat that far to self dialate...UGH!!! Sandra, I've been mindfully chewing about 3 times more than I normally would, some things just seem to stick. I'm eating very little, the most in a good sitting would be 4oz total. I'm sorry you had to go to the ER!! What a horrible feeling that must have been.

I guess my confusion is...if it's scar tissue from the breathing tube during the surgery, why not remove the scar/excess tissue??

Greg

NLMCEM
Posts: 52
Joined: Aug 2010

My husband still eats very little at a time and is always hungry. He had stretching every month for 4 months, then went every 2 weeks and back to every 3 months. That was since Dec 2010. The ones done at 2 weeks did not stretch as far hoping to not tear as much and cause even more scar tissue. His last was finally in March 2012 and even though he has some trouble it isn't to the point he needs to be stretched again as of yet.

I read you chew your food more, do you also try to take smaller bites at a time? That is my husbands biggest trouble. He wants to use his BIG spoon and he just would not listen to me about taking smaller bites no matter how well he thinks he chews it, I think too much at once is just as bad as not chewing well. When he had his last test the nurse asking him questions also mentioned what not to eat and to take smaller bites as has many in the past. He seems to finally be trying and is doing some what better. Although he gags on his own saliva often, that drives him crazy.

Can you drink ensure or milkshakes with added fruit and yogurt? That may help you. My husband is unable to drink even the vanilla flavor ones so this has been another problem for him. They burn his throat as many other items do still to this day. So how he is maintaining his weight is a miracle. He went from 195 per-surgery to 140 post-surgery and now is a steady 155.

Not sure but I believe removing scar tissue would only be done as a last resort as trying to remove it in the long run could make it even worse. And that would be another major surgery. The scar tissue is probably not from the breathing tube but more from where your stomach was pulled up and connected with what ever is left of your esophagus. That can lead to a shelf like formation as you heal and why the stretching is done.

Take it a day at a time. My husband feels much better then he had even though he is on disability now because he gets weak very fast and still has pain in his belly everyday. He walked out of the hospital after surgery but ended up in a wheel chair for a month because he was so weak. Don't over do but do what you can. Everyone is different and my husband was Stage 3 now Stage 4 which may be why he is having it so rough and not improving as well as some. But he is enjoying life, we visit with family far and near and he is fixing our home up, enjoying his good days! He has a wonderful attitude even when he has bad days.

Don't lay down after eating and try not to eat close to bed time. My husband still sleeps on his recliner most nights straight up. When he does get to sleep in bed that is elevated and with 4 huge pillows he feels in heaven :)

It does take time so keep your chin up and know we all wish you the best!
EC Fighter Caregiver,
Carolyn

Paul is a wonderful help so try to read his post and check out the links he provides.

sideways's picture
sideways
Posts: 21
Joined: Aug 2012

Thanks for the information Carolyn! I do take small bites and chew a lot. Last night I took my 3 oral meds, the biggest, my dexilant capsule was no problem, the smallest, my probiotic which is the size of a birth control pill is still seemingly stuck this morning :(. The first question I asked my surgeon was where the new esophogeal attachment point was. Unless he's confused it is quite a bit south of where I swallow according to him. I have an appointment with him on Thursday, which really sucks because this is not getting better. Add to that, then I'll have to wait for another week for the endoscope :(

Greg

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