Esophagectomy - what now?

Rhonda78

Hello.

My dad was diagnosed with Esophageal Cancer last April. He experienced 6 weeks of radiation (and 6 rounds of chemo), which did shrink the tumor, but did not leave him without cancer completely. In early Sept, he had surgery to remove most of his esophagus and part of his stomach. The surgery went really well and he was out of the hospital in 9 days.

Since then, it has been a roller coaster of emotions. Before all of this transpired, my dad had never been in a hospital or an ER. He had never had a medical issue in his life. All of the doctors, medical facilities, medications....all of it....was so brand new to him, it was almost amazing. Granted, I'm grateful he never had to ive through any of this before now, it was still hard watching him face all of the anxiety of it, along with having cancer.

My question, to anyone who can help, is this: how long, after surgery, did it take for you to get back to your "normal"? I realize that my dad won't be able to eat large meals anymore, but he isn't eating at all right now. He just isn't hungry. I fear him being dehydrated. He doesn't like most drinks, not even water, and he can't have his usual carbonated drinks. (Is that yet, or ever, I wonder?) My dad is finally getting outside a little more, but he loses his breath a lot, even just walking to the end of the driveway. Recently he was on iron and vitamin B but he experienced itching and swelling of the legs and they had to take him off of it. And the worst part, for right now anyway, is the lack of sleep. He has been in a recliner since being out of the hospital, but he is only sleeping 3-4 hours a night. I can tell he is getting depressed because of it. Which brings me to a question about wedge pillows....until he looks into the adjustable beds, does anyone have a suggestion on the best one for him to get some sleep, and stay at a 30 degree angle?

I'm scared for my dad. I just want to help him in any way that I can. Any suggestions, advice, and/or support are very appreciated.

Rhonda78

LorettaMarshall

Dad's "New Normal" after surgery for Esophageal Cancer patients

 

Dearest Rhonda78

             Be forewarned, this is a detailed reply and quite lengthy.  Now, seeing that this is your first post on the EC link here, it leaves me no history of your Dad’s problems prior, or during, his radiation and chemo treatments or surgical procedure.  So by reading through your letter, I am to assume that his stage of Esophageal Cancer was Stage III or less, since only palliative measures can be given for Stage IV.  Neither do I know your Dad’s age.  You also say he has never been ill before.  We Esophageal Cancer patients and/or caregivers are always curious as to what symptoms a patient presented with that led to the diagnosis of Esophageal Cancer.  We are always curious, as well, to know the medical facility that performed the surgical procedure and what type of Esophagectomy was performed.

           In any event, in the words of an infamous past president that loved to say, “I feel your pain” whether or not he really did, WE REALLY DO!   I know that as a family member, you have been through your own form of pain, although not the same as your father.  It’s good that you have written to find help and support.  I’m sure others will write as well and share their story of progression back to a “new normal” after their surgeries.  Still, there will be others who were not eligible for any kind of surgery, and would love to be grappling with the after effects of surgery.  Either way, we all possess a unique experience when we, or someone dear to us, is diagnosed with Esophageal Cancer.  If you are like the rest of us, most of us never even heard of Esophageal Cancer or how to “spell it”, even though we knew how to spell CANCER.  But now, it is “up close and personal” and those of us who face it realistically will fare best. 

           So before I proceed further, let me tell you that I am the wife of an Esophageal Cancer patient, William W. Marshall, who was diagnosed with EC Stage III (T3N1M0) in Thanksgiving of 2002.  He is now entering his 14^th year of survival! 

            His only symptom was a persistent hiccup.  After a couple of months, I said, “You need to see a doctor.  Something is wrong with you.”  And so we did.  Two days after an appointment with our Internist, my husband had an appointment with a Gastroenterologist for an Endoscopy.  Afterward, the nurse said, “Don’t let him drive for the next 12 hours.  He should be fine.”  I do wish she had not hustled us out the door quite so quickly.  You see, the next day at 2:30 P.M. the doctor called and said, “I do wish you had stayed around yesterday.  I needed to talk with you.  Your husband has cancer!”  You know that sinking, faint feeling when you hear those words, I am sure.  So that’s how our journey began.  After I asked the doctor how to spell “ESOPHAGEAL”, we began a search to find out about this never-before-heard-of cancer.  And I suppose that’s how so many of our fellow cancer patients felt as well.  We wondered “Are we going to live or die?  Who has survived this?  What did they do?  Where did they go to find help, etc.?”

            I speak in the plural since I’ve always said, “When my husband has cancer, I have cancer.”  Now in reality, at the time of his diagnosis back in 2002, I could never know exactly how my husband felt as the patient with the cancer, nor could he know exactly how I felt as the wife and caregiver.  Nonetheless, it was a “joint effort.”  Now we both know how it feels, as cancer patients and as caregivers, since I was diagnosed in November of 2012 with Ovarian Cancer, Stage IV, which is terminal at some point.  But I am not writing about me, and I thank God I am alive today.  I have just completed a second series of chemotherapy treatments September 25, 2015, so I certainly identify with the “crippling effects and excessive fatigue” that chemo treatments can bring on.  I now know the emotions of both a patient and a caregiver, and so does my husband, William.  We are in this together.

           We are both realists and quickly accepted our diagnoses.  We are ONE.  Our love for each other has grown stronger, as well as in our personal faith.  Personally, we choose to believe what the Psalmist wrote in Psalm 139.  God knows the number of our days, He just hasn’t put the date on a calendar for us.  We know that we are not going to die one day sooner than our “allotted” days on Planet Earth.  So with the promise that God isn’t going to leave us or forsake us, we take each day as it comes, not knowing the circumstances that each day brings.  He is the source of our peace, acceptance and power to cope.

           You need to know that depression is not unusual either before or after one’s encounter with this cancer.  It sometimes is a result of the person’s ability to cope with life in general.  Some are more optimistic than others.  But the fact that your Dad had never been ill prior to this diagnosis certainly comes as a shock to him.  Also the amount of research one does after hearing that they have Esophageal Cancer, will help to allay their fears and inform them of all the possibilities.  Sometimes the patient cannot face this reality, but often a family member or spouse can.  Many times it is the caregiver who writes here and asks questions.  The more informed one is, the more realistic will be their expectations. 

           Your Dad will be less depressed in time to come as he learns more about the “stages of survival.”  I am sorry if his expectations were that he would immediately bounce back after surgery.  It takes time—especially if he has had the more invasive open surgical procedure.  At this point, although you didn’t go into great detail, we will assume that he passed the “swallow test” and did not have any “leaks”. 

           Moreover, we will just assume that he had no residual cancer in any of the lymph nodes that were removed for pathological testing.  If this is so, then he is not facing any post-op chemotherapy, as often patients must undergo.  If this is the case, he is blessed, and should realize that some here haven’t fared as well as he has.  He may not think he is “faring well”, but as far as the surgery goes, we will assume that there were no difficulties.  Understanding what lies ahead and the time frame involved will be helpful.  The more Dad learns from others’ experiences, the more his fears will subside.  No one ever said, “It’s a piece of cake”, but it is doable and there are survivors.  He must take the “long look” and accept that there are incremental stages to returning to normal, although it is a “new normal.”  Not that you are complaining, but contending with sleeping on a wedge, and/or eating mini-meals, is a small price to pay for survival, is it not? So far, he is a survivor, albeit somewhat “worse for wear.”

           My husband is a “poster child” for Esophageal Cancer.  He was first diagnosed here in Virginia Beach, Virginia locally.  We went to the University of Pittsburgh Medical Center (UPMC) for a second opinion.  The cancer diagnosis remained the same, EC Stage III (T3N1M0), but the surgical procedure changed.  UPMC utilizes the latest laparoscopic procedures.  William’s surgery was known as the Ivor Lewis MINIALLY INVASIVE Esophagectomy (MIE).  It consisted of 7 small bandaid cuts.  He did have pre-op chemo/radiation.  There was no residual cancer found in any of the 23 lymph nodes removed during surgery.  He passed the swallow test.  This meant that there were no leaks at the anastomosis (place where organs were rejoined).  He was only in the hospital for 5 days and downtown shopping with me in Pittsburgh on Day 8.  Yes, it was and still is miraculous that he has now entered his 14^th year of survival since being diagnosed first in 2002 and is still cancer free.  But he experienced the same post-op problems as do others relative to eating and especially the “dumping syndrome.”  That is fairly standard for post-surgical patients.  It does resolve itself in time.

           As for the question, “ How long, after surgery, did it take for you to get back to your "normal"?  That depends on several factors.  One of which depends on what type of surgical procedure your Dad had.  There are different types of Esophagectomies surgeons are performing today.  Often it depends on the surgeon whom one chooses, and whether or not that surgeon is adept at the latest technological advances, or whether he/she are still performing the only procedure they learned 30 years ago.  There are 3 basic types of Esophagectomies  performed today, and I won’t delve into them here because Dad is past the surgery stage.

          He is now in post-surgical stage, and that carries its own unique set of survival techniques.  I will say that there are patients posting on this site that have had different types of surgeries and they are all surviving, but have one thing in common, adjustment to a “new normal”,.  The first is usually their “eating habits”.  I will say in that regard, no matter the type of surgery, all will have to cope with learning what to eat when, and how much.  I will put some links below my name that will help Dad IF he will follow them.

           Moreover, usually during an Esophagectomy, the doctor inserts a “J” tube.  That is placed in the second section of the small intestine.  My husband kept his in for 3 weeks.  The formula used was “Osmalite”.  That will depend on each individual patient.  But I must tell you his first meal consisted of 2 Tablespoonsful of Cream of Wheat.  That gives you an idea of the “intake level.”  No, it won’t be steak for quite some time, but some creamed potatoes could come earlier.  Furthermore, Dad should eat the soft mushy foods by themselves, and save his fluid intake for “in between” meals. That will all be explained in the links provided.

           Yes, he will be constantly eating and drinking all day long.  My husband lost 60# during the first year.  It took him about 9 months to level out as far as weight, and has kept a weight range of 215# since his surgery in May of 2003.  He was overweight at 275 and 6 ft. tall, so he didn’t have to worry about being skinny after the surgery.  However, for others weight loss after surgery is a problem when they were never “fat” to begin with.  For some they never return to their former weight prior to surgery. 

           You also say, “He doesn't like most drinks, not even water, and he can't have his usual carbonated drinks. (Is that yet, or ever, I wonder?) Dehydration will certainly be a problem if he isn’t drinking.  No wonder he is breathless when he tries to walk down the driveway.  He should go to the doctor as soon as possible, and request some hydration.  He shouldn’t have to “beg” for it either.  This will make a big difference in the way he feels.  Moreover, I hope that his return checkups are “frequent” at this post-surgical stage.  Whoever accompanies him to the doctor for follow-ups should be speaking in Dad’s behalf if he is reticent and isn’t telling the doctor how he really feels.

           And yes, in the future, he will be able to drink carbonated beverages, just not at this early stage.  Those things are covered in the “post-esophageal diet” link.  You might want to print them out from your dad.  

           Moreover, since you state that he is sleeping for only 3 or 4 hours at best, and that he has slept in a “recliner ever since his surgery. ”  This leaves me to wonder if your Dad had a surgeon who performed the “TransThoracic Ivor Lewis Esophagectomy”, more often referred to as the “OPEN” surgery, since it requires 2 massive incisions.  However, that is just a guess since so many who have the “open Ivor Lewis” surgery are unable to rest comfortably in a bed, and often do sleep in a recliner for the first few months after surgery.  

           You will most likely get a reply from “Paul61” who did have the “open” surgery.  He is now into his 5^th year of survival.  He has a wealth of experience and gives detailed information as well.  In one of his replies, he stated that he purchased a special bed.   Athough it seems expensive, in the long run, it is not because Esophageal Cancer patients must sleep elevated for the rest of their days.   If you can afford it, you deserve it.  We first bought the “bed raisers” that did nothing but make us both slide down to the foot of the bed.  So the bed raisers are good if you need to store high objects underneath the bed, but we found them to be totally worthless for our needs.  We then bought a 7-inch wedge from a local bed/bath store and found that to be of insufficient height.  We then went on the web and ordered a 12-inch wedge.  It works.

          So I surfed the web this morning to find something similar to our wedge and have found this site.  It seems to have many good reviews.  It is not exactly the wedge that we bought, but it looks similar.  Ours came with a removable pillow cover, however, I made an additional cover for it out of a soft knit fabric.  Furthermore, we put a bed pillow on each side as “arm rests” because the wedge is only 2 feet wide.  That doesn’t give room enough to rest your arms on the wedge itself.  We also put a separate pillow on the bed to rest his thighs on so as to keep him from slipping down off the wedge.  This works for us.  We would strongly suggest you purchase something that is at least 12 inches in height.  So here is that link.  We haven’t ordered anything from them, but if you need to know more, there is usually a phone number for customer service which you can call if you have more questions, relative to return policies, if there are any, etc..

 1.  http://www.amazon.com/dp/B009HHLBKK?psc=1

 InteVision Foam Wedge Bed Pillow (25" x 24" x 12") with High Quality, Removable Cover

_______________________________________________________________________

            Okay Rhonda, you have a lot of reading to do.  If you or your Dad would like to talk with my husband, William, send me a private message and give us your e-mail or phone number.  We would consider it a privilege to speak with you anytime.  This also goes for anyone else who might read this entry. Once you have been diagnosed with cancer, you’re living in a different world, and it’s always uplifting to talk with survivors!  We pray that all things will resolve themselves in due time.  Dad needs to be patient.  Things will be better if he knows the “guidelines” for survival.

Sincere best wishes,

Loretta Marshall

Ovarian Cancer Stage IV patient, and wife of William W. Marshall,  EC Stage III, (T3N1M0), Ivor Lewis MINIMALLY INVASIVE Esophagectomy, by Dr. James D. Luketich at University of Pittsburgh Medical Center (UPMC) May 17, 2003

___________________________________________________________________________

 Here are some very informative links for a dietary guide for post-Esophagectomy patients.

2.  http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx

“Diet After an Esophagectomy

An esophagectomy (ee-soff-uh-JEK-tuh-mee) is surgery to remove the esophagus. After this type of surgery, it is common to have some problems eating for a few months.

What can I expect after surgery?

For the first few months after surgery, you may have problems such as:

Weight loss

• Dumping syndrome (nausea, diarrhea, abdominal cramping, light-headedness)

• Excess gas

• Trouble swallowing

  Your diet plan after surgery is designed to lessen your discomfort and allow you to enjoy eating.

  What type of diet will I have?

  You will have several types of diet. Your diet will change slowly based on your rate of recovery and how well you can tolerate food. The amount of liquids that you are permitted to have at one time will vary based on your doctor's recommendation. In general, your diet plan will advance as follows:

 1.     Clear liquid diet, for the first few days after surgery

 2.     Full liquid diet

 3.     Soft diet

 Each person tolerates food in a different way. Your doctor will advance your diet plan based upon your progress after surgery...”

____________________________________________________________________________

3.  http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx

“Dumping Syndrome Diet

 Dumping syndrome sometimes happens after stomach surgery.

 Dumping syndrome is caused by large amounts of food passing quickly into the small intestine. This causes symptoms like abdominal pain, cramping, nausea, diarrhea, dizziness, weakness, rapid heart beat, and fatigue. This diet will help stop the symptoms of dumping syndrome…”

_________________________________________________________________________________

 4.  http://www.oncolink.org/coping/article.cfm?c=3&s=64&ss=158&id=989

 

“Post-Esophagectomy Diet

 Karen Wagner, MS, RD, LDN and Katrina Claghorn, MS, RD, LDN- Abramson Cancer Center of the University of Pennsylvania
Last Modified: December 23, 2014

 Esophagectomy is a surgery to remove all or part of the esophagus, which is the tube food moves through on its way from the mouth to the stomach. When the esophagus is removed, the stomach is pulled up into the chest and reattached to keep the food passageway intact. This stretching of the stomach takes away the ability to eat large meals, as there is no longer a large "holding area" for food to be digested. Nutrition is an important part of healing and preventing weight loss after surgery. Patients can experience nausea, vomiting, acid reflux, and dumping syndrome. This article will review some ways to decrease these symptoms. Check with your healthcare team for specific recommendations for your case.

 After the surgery, the remaining esophagus may not be able to move foods as easily from your mouth to your stomach. Certain foods can block the esophagus or be difficult to swallow. Some people complain of food "sticking", or have midsternal (behind the breast bone) pain. This may be prevented or resolved by sipping fluids when eating solid foods, chewing foods well, eating soft or chopped foods and avoiding tough, gummy, or stringy foods.

 You may also get gastroesophageal reflux symptoms, such as heartburn and reflux of stomach contents, causing intolerance to certain foods, especially acidic, fatty, and very hot or very cold foods. Gas and bloating sometimes occur after surgery. Therefore, you may wish to avoid foods that are known to cause gas.

 Each person is different and will tolerate different foods. Only you can decide which foods 'agree' with you and which don't. Below are ideas that may help you to manage your symptoms. The most important guide is how you feel after eating a food…”

 

                                                End of references

 

 

 

 

paul61

Rhonda,

You did not mention the type of esophagectomy your Dad had; but irrespective of what type of surgery he had, an esophagectomy with gastric pull up is a highly invasive surgery and recovery takes a significant amount of time. As Loretta has mentioned above, some surgical approaches are more invasive and take longer to recover from, than others. A patient’s age and physical condition prior to surgery also makes a difference in how long recovery takes. It sounds like your Dad was in excellent physical condition given his lack of experience with medical facilities and processes.

I was like your Dad in the respect that prior to my diagnosis with esophageal cancer I had never been in the hospital or had any significant medical issue. I was diagnosed at 61. I was very active, I walked four miles a day, I played golf several times a week, and I generally felt great. My only issue was regular acid indigestion that kept me awake at night so I went to my PCP for what I thought was a routine prescription for acid inhibitor medication. “Just to be safe” he referred me for an endoscopy. We were both very surprised when the biopsies came back with a diagnosis of esophageal adenocarcinoma.

I had an Ivor Lewis “open esophagectomy”. I had two large incisions; one in my abdomen that went from just above my belly button to my sternum, and one in my back that went from the middle of my back to the top of my right shoulder blade. If your Dad had several small incisions he probably had a minimally invasive laparoscopic esophagectomy. If he has large incisions like I described he probably had the more highly invasive “open” surgical approach.

It took me approximately a year before I felt that I was recovered enough to enjoy a quality of life similar to that I enjoyed prior to surgery. For the first month after surgery, just getting up, getting dressed and shaving made me so out of breath that I had to go sit on the edge of the bed when I was done. For the first two months after surgery short walks were all I could manage, and any exertion quickly made me feel out of breath and weak. After about three months I was taking longer walks and could do some simple chores around the house and in the yard. At six months I was back to two miles a day and I could play golf using a golf cart. Things continued to get gradually better from a stamina point of view from six months on and at about a year I was back to my four miles a day and walking 18 holes of golf a couple times a week.

Eating was a challenge for me. After surgery I had no appetite and when I did eat I would have abdominal cramps and frequent diarrhea. I learned that I had to eat on a schedule and view food as medication that I had to schedule to insure I was appropriately hydrated and received enough nutrition. I am never hungry and have learned to eat seven small meals a day. I also insure that I drink several glasses of water a day between meals (not with meals).

Your Dad will eventually reach a point that he can eat and drink all the things he enjoyed prior to surgery, just in smaller amounts. He will get to a point where things will sound good and are appealing again; but for most of us, the feeling of hunger is permanently gone. When our stomach is resected and relocated one of the major nerves that provide that feeling of hunger is severed.

I have to admit that I was very depressed after surgery and it took me some time to get my normal positive outlook back again. I think I was depressed for three reasons:

First, it is very normal for patients of major surgery to go through a period of depression. It is the body’s normal reaction to major stress and physical insult.

Second, I had always been very healthy, being diagnosed with a life threatening disease was a major shock to my psyche. Not something I had expected to deal with.

Third, I suddenly came face to face with my mortality. Most cancer survivors will tell you that after they are diagnosed with cancer there is no such thing as “just a headache” or “just a pulled muscle”. The fear of recurrence is always there, particularly for the first few years after diagnosis. We do learn to live with the lack of security but it does take time. I know many cancer survivors have talked to their oncologists about medical intervention for depression. In my case time and meditation resolved my issues.

Loretta has given you some excellent references for information on diet and nutrition management. Both you and your Dad will have to be patient. Recovery does take time. But your Dad does have the best medicine available; a loving and supportive family.

As Loretta and William have said, we are always happy and honored to talk with a fellow survivor.  Sometimes it is just good to be able to ask someone who has been there, “Is this normal?” So if your Dad would like to send me a private message I will pass along my contact information.   

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009

Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU

 

Five Year Survivor

bmaker

Your Dad sounds like me. I

Your Dad sounds like me. I was diagnosed with stage 3 N1 esophageal cancer last April. I had six weeks of Radiation and Chemotherapy then a mnth off and the trans thoracic surgery.  I was supposed to spend 10 days in the hospital but complications stretched that out to almost 40.  After getting home i was almost to weak to shower by myself but as time went by i got stronger and it seemed effortless after awhile.  Now it is 4 months removed from surgery but i still have considerable pain at the incision sites the most bothersome one being under my right arm. This area feels numb and has since the operation. Other then that i would have to say evrything else is ok and im happy to be here. A 65 year old survivor.

csacerdote

Problems following Surgery

I am 54 years old and was diagnosed with esophageal cancer late last year.  I underwent chemo/radiation therapy in February/March, then esophagectomy surgery at Sloan Kettering in April.

I was discharged 10 days following surgery, but developed a major complication 1-1/2 days after returning home.  My right lung collapsed as a result of "acute leak-induced pneumonia".  (A drink/leak test was never performed prior to discharge.)  I wound up spending another 2 weeks in the hospital, undergoing enormous pain as they tried to drain my abdominal cavity.

Thankfully that's behind me now, although I'm far from out of the woods.  I keep loosing weight - can't eat enough to sustain - and have fallen into a very bad depression.  I've suffered from depression before, and got back onto the a-d drug that's worked for me in the past - prozac.  But I'm still very down, which is probably related to the fact that I can't eat enough.

This process has taken months, I really don't feel better, and I've begun to lose hope.  Any words of advice or hope or encouragement would certainly be appreciated.

Thank you - Craig

 

Deathorglory

csacerdote said:

Problems following Surgery

I am 54 years old and was diagnosed with esophageal cancer late last year.  I underwent chemo/radiation therapy in February/March, then esophagectomy surgery at Sloan Kettering in April.

I was discharged 10 days following surgery, but developed a major complication 1-1/2 days after returning home.  My right lung collapsed as a result of "acute leak-induced pneumonia".  (A drink/leak test was never performed prior to discharge.)  I wound up spending another 2 weeks in the hospital, undergoing enormous pain as they tried to drain my abdominal cavity.

Thankfully that's behind me now, although I'm far from out of the woods.  I keep loosing weight - can't eat enough to sustain - and have fallen into a very bad depression.  I've suffered from depression before, and got back onto the a-d drug that's worked for me in the past - prozac.  But I'm still very down, which is probably related to the fact that I can't eat enough.

This process has taken months, I really don't feel better, and I've begun to lose hope.  Any words of advice or hope or encouragement would certainly be appreciated.

Thank you - Craig

 

Sorry to Hear You're Having Problems

Craig,

First off, I'm shocked MSK didn't do a leak test on you before you were let go.  It was intensely unpleasant, but it was SOP when I had the surgery in 2008.  I've had my fair share of lung related problems (pneumonia after surgery, a recurrence of the EC in a lung, and emphysema this year), but I'm not familiar with a collapsed lung.  It sounds ugly.  You are still fairly close to your surgery, so the weight and eating issues are fairly normal.  I lost 50 pounds through treatment and surgery and I didn't have much to spare to begin with (I went from 165 to 115, but have gotten back to 161 over time).  Many small meals a day along with supplements like ensure are the most common route to build back weight/strength.

As far as the depression goes, that's also fairly common as folks adjust to their new normal.  You seem to be proactive and are trying to do something about it. That's farther than a lot of folks ever get.  The best thing I can suggest is that you try to stay strong, it actually does get better.

All the Best,

Ed

CorgiMom

LorettaMarshall said:

Dad's "New Normal" after surgery for Esophageal Cancer patients

 

Dearest Rhonda78

             Be forewarned, this is a detailed reply and quite lengthy.  Now, seeing that this is your first post on the EC link here, it leaves me no history of your Dad’s problems prior, or during, his radiation and chemo treatments or surgical procedure.  So by reading through your letter, I am to assume that his stage of Esophageal Cancer was Stage III or less, since only palliative measures can be given for Stage IV.  Neither do I know your Dad’s age.  You also say he has never been ill before.  We Esophageal Cancer patients and/or caregivers are always curious as to what symptoms a patient presented with that led to the diagnosis of Esophageal Cancer.  We are always curious, as well, to know the medical facility that performed the surgical procedure and what type of Esophagectomy was performed.

           In any event, in the words of an infamous past president that loved to say, “I feel your pain” whether or not he really did, WE REALLY DO!   I know that as a family member, you have been through your own form of pain, although not the same as your father.  It’s good that you have written to find help and support.  I’m sure others will write as well and share their story of progression back to a “new normal” after their surgeries.  Still, there will be others who were not eligible for any kind of surgery, and would love to be grappling with the after effects of surgery.  Either way, we all possess a unique experience when we, or someone dear to us, is diagnosed with Esophageal Cancer.  If you are like the rest of us, most of us never even heard of Esophageal Cancer or how to “spell it”, even though we knew how to spell CANCER.  But now, it is “up close and personal” and those of us who face it realistically will fare best. 

           So before I proceed further, let me tell you that I am the wife of an Esophageal Cancer patient, William W. Marshall, who was diagnosed with EC Stage III (T3N1M0) in Thanksgiving of 2002.  He is now entering his 14^th year of survival! 

            His only symptom was a persistent hiccup.  After a couple of months, I said, “You need to see a doctor.  Something is wrong with you.”  And so we did.  Two days after an appointment with our Internist, my husband had an appointment with a Gastroenterologist for an Endoscopy.  Afterward, the nurse said, “Don’t let him drive for the next 12 hours.  He should be fine.”  I do wish she had not hustled us out the door quite so quickly.  You see, the next day at 2:30 P.M. the doctor called and said, “I do wish you had stayed around yesterday.  I needed to talk with you.  Your husband has cancer!”  You know that sinking, faint feeling when you hear those words, I am sure.  So that’s how our journey began.  After I asked the doctor how to spell “ESOPHAGEAL”, we began a search to find out about this never-before-heard-of cancer.  And I suppose that’s how so many of our fellow cancer patients felt as well.  We wondered “Are we going to live or die?  Who has survived this?  What did they do?  Where did they go to find help, etc.?”

            I speak in the plural since I’ve always said, “When my husband has cancer, I have cancer.”  Now in reality, at the time of his diagnosis back in 2002, I could never know exactly how my husband felt as the patient with the cancer, nor could he know exactly how I felt as the wife and caregiver.  Nonetheless, it was a “joint effort.”  Now we both know how it feels, as cancer patients and as caregivers, since I was diagnosed in November of 2012 with Ovarian Cancer, Stage IV, which is terminal at some point.  But I am not writing about me, and I thank God I am alive today.  I have just completed a second series of chemotherapy treatments September 25, 2015, so I certainly identify with the “crippling effects and excessive fatigue” that chemo treatments can bring on.  I now know the emotions of both a patient and a caregiver, and so does my husband, William.  We are in this together.

           We are both realists and quickly accepted our diagnoses.  We are ONE.  Our love for each other has grown stronger, as well as in our personal faith.  Personally, we choose to believe what the Psalmist wrote in Psalm 139.  God knows the number of our days, He just hasn’t put the date on a calendar for us.  We know that we are not going to die one day sooner than our “allotted” days on Planet Earth.  So with the promise that God isn’t going to leave us or forsake us, we take each day as it comes, not knowing the circumstances that each day brings.  He is the source of our peace, acceptance and power to cope.

           You need to know that depression is not unusual either before or after one’s encounter with this cancer.  It sometimes is a result of the person’s ability to cope with life in general.  Some are more optimistic than others.  But the fact that your Dad had never been ill prior to this diagnosis certainly comes as a shock to him.  Also the amount of research one does after hearing that they have Esophageal Cancer, will help to allay their fears and inform them of all the possibilities.  Sometimes the patient cannot face this reality, but often a family member or spouse can.  Many times it is the caregiver who writes here and asks questions.  The more informed one is, the more realistic will be their expectations. 

           Your Dad will be less depressed in time to come as he learns more about the “stages of survival.”  I am sorry if his expectations were that he would immediately bounce back after surgery.  It takes time—especially if he has had the more invasive open surgical procedure.  At this point, although you didn’t go into great detail, we will assume that he passed the “swallow test” and did not have any “leaks”. 

           Moreover, we will just assume that he had no residual cancer in any of the lymph nodes that were removed for pathological testing.  If this is so, then he is not facing any post-op chemotherapy, as often patients must undergo.  If this is the case, he is blessed, and should realize that some here haven’t fared as well as he has.  He may not think he is “faring well”, but as far as the surgery goes, we will assume that there were no difficulties.  Understanding what lies ahead and the time frame involved will be helpful.  The more Dad learns from others’ experiences, the more his fears will subside.  No one ever said, “It’s a piece of cake”, but it is doable and there are survivors.  He must take the “long look” and accept that there are incremental stages to returning to normal, although it is a “new normal.”  Not that you are complaining, but contending with sleeping on a wedge, and/or eating mini-meals, is a small price to pay for survival, is it not? So far, he is a survivor, albeit somewhat “worse for wear.”

           My husband is a “poster child” for Esophageal Cancer.  He was first diagnosed here in Virginia Beach, Virginia locally.  We went to the University of Pittsburgh Medical Center (UPMC) for a second opinion.  The cancer diagnosis remained the same, EC Stage III (T3N1M0), but the surgical procedure changed.  UPMC utilizes the latest laparoscopic procedures.  William’s surgery was known as the Ivor Lewis MINIALLY INVASIVE Esophagectomy (MIE).  It consisted of 7 small bandaid cuts.  He did have pre-op chemo/radiation.  There was no residual cancer found in any of the 23 lymph nodes removed during surgery.  He passed the swallow test.  This meant that there were no leaks at the anastomosis (place where organs were rejoined).  He was only in the hospital for 5 days and downtown shopping with me in Pittsburgh on Day 8.  Yes, it was and still is miraculous that he has now entered his 14^th year of survival since being diagnosed first in 2002 and is still cancer free.  But he experienced the same post-op problems as do others relative to eating and especially the “dumping syndrome.”  That is fairly standard for post-surgical patients.  It does resolve itself in time.

           As for the question, “ How long, after surgery, did it take for you to get back to your "normal"?  That depends on several factors.  One of which depends on what type of surgical procedure your Dad had.  There are different types of Esophagectomies surgeons are performing today.  Often it depends on the surgeon whom one chooses, and whether or not that surgeon is adept at the latest technological advances, or whether he/she are still performing the only procedure they learned 30 years ago.  There are 3 basic types of Esophagectomies  performed today, and I won’t delve into them here because Dad is past the surgery stage.

          He is now in post-surgical stage, and that carries its own unique set of survival techniques.  I will say that there are patients posting on this site that have had different types of surgeries and they are all surviving, but have one thing in common, adjustment to a “new normal”,.  The first is usually their “eating habits”.  I will say in that regard, no matter the type of surgery, all will have to cope with learning what to eat when, and how much.  I will put some links below my name that will help Dad IF he will follow them.

           Moreover, usually during an Esophagectomy, the doctor inserts a “J” tube.  That is placed in the second section of the small intestine.  My husband kept his in for 3 weeks.  The formula used was “Osmalite”.  That will depend on each individual patient.  But I must tell you his first meal consisted of 2 Tablespoonsful of Cream of Wheat.  That gives you an idea of the “intake level.”  No, it won’t be steak for quite some time, but some creamed potatoes could come earlier.  Furthermore, Dad should eat the soft mushy foods by themselves, and save his fluid intake for “in between” meals. That will all be explained in the links provided.

           Yes, he will be constantly eating and drinking all day long.  My husband lost 60# during the first year.  It took him about 9 months to level out as far as weight, and has kept a weight range of 215# since his surgery in May of 2003.  He was overweight at 275 and 6 ft. tall, so he didn’t have to worry about being skinny after the surgery.  However, for others weight loss after surgery is a problem when they were never “fat” to begin with.  For some they never return to their former weight prior to surgery. 

           You also say, “He doesn't like most drinks, not even water, and he can't have his usual carbonated drinks. (Is that yet, or ever, I wonder?) Dehydration will certainly be a problem if he isn’t drinking.  No wonder he is breathless when he tries to walk down the driveway.  He should go to the doctor as soon as possible, and request some hydration.  He shouldn’t have to “beg” for it either.  This will make a big difference in the way he feels.  Moreover, I hope that his return checkups are “frequent” at this post-surgical stage.  Whoever accompanies him to the doctor for follow-ups should be speaking in Dad’s behalf if he is reticent and isn’t telling the doctor how he really feels.

           And yes, in the future, he will be able to drink carbonated beverages, just not at this early stage.  Those things are covered in the “post-esophageal diet” link.  You might want to print them out from your dad.  

           Moreover, since you state that he is sleeping for only 3 or 4 hours at best, and that he has slept in a “recliner ever since his surgery. ”  This leaves me to wonder if your Dad had a surgeon who performed the “TransThoracic Ivor Lewis Esophagectomy”, more often referred to as the “OPEN” surgery, since it requires 2 massive incisions.  However, that is just a guess since so many who have the “open Ivor Lewis” surgery are unable to rest comfortably in a bed, and often do sleep in a recliner for the first few months after surgery.  

           You will most likely get a reply from “Paul61” who did have the “open” surgery.  He is now into his 5^th year of survival.  He has a wealth of experience and gives detailed information as well.  In one of his replies, he stated that he purchased a special bed.   Athough it seems expensive, in the long run, it is not because Esophageal Cancer patients must sleep elevated for the rest of their days.   If you can afford it, you deserve it.  We first bought the “bed raisers” that did nothing but make us both slide down to the foot of the bed.  So the bed raisers are good if you need to store high objects underneath the bed, but we found them to be totally worthless for our needs.  We then bought a 7-inch wedge from a local bed/bath store and found that to be of insufficient height.  We then went on the web and ordered a 12-inch wedge.  It works.

          So I surfed the web this morning to find something similar to our wedge and have found this site.  It seems to have many good reviews.  It is not exactly the wedge that we bought, but it looks similar.  Ours came with a removable pillow cover, however, I made an additional cover for it out of a soft knit fabric.  Furthermore, we put a bed pillow on each side as “arm rests” because the wedge is only 2 feet wide.  That doesn’t give room enough to rest your arms on the wedge itself.  We also put a separate pillow on the bed to rest his thighs on so as to keep him from slipping down off the wedge.  This works for us.  We would strongly suggest you purchase something that is at least 12 inches in height.  So here is that link.  We haven’t ordered anything from them, but if you need to know more, there is usually a phone number for customer service which you can call if you have more questions, relative to return policies, if there are any, etc..

 1.  http://www.amazon.com/dp/B009HHLBKK?psc=1

 InteVision Foam Wedge Bed Pillow (25" x 24" x 12") with High Quality, Removable Cover

_______________________________________________________________________

            Okay Rhonda, you have a lot of reading to do.  If you or your Dad would like to talk with my husband, William, send me a private message and give us your e-mail or phone number.  We would consider it a privilege to speak with you anytime.  This also goes for anyone else who might read this entry. Once you have been diagnosed with cancer, you’re living in a different world, and it’s always uplifting to talk with survivors!  We pray that all things will resolve themselves in due time.  Dad needs to be patient.  Things will be better if he knows the “guidelines” for survival.

Sincere best wishes,

Loretta Marshall

Ovarian Cancer Stage IV patient, and wife of William W. Marshall,  EC Stage III, (T3N1M0), Ivor Lewis MINIMALLY INVASIVE Esophagectomy, by Dr. James D. Luketich at University of Pittsburgh Medical Center (UPMC) May 17, 2003

___________________________________________________________________________

 Here are some very informative links for a dietary guide for post-Esophagectomy patients.

2.  http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx

“Diet After an Esophagectomy

An esophagectomy (ee-soff-uh-JEK-tuh-mee) is surgery to remove the esophagus. After this type of surgery, it is common to have some problems eating for a few months.

What can I expect after surgery?

For the first few months after surgery, you may have problems such as:

Weight loss

• Dumping syndrome (nausea, diarrhea, abdominal cramping, light-headedness)

• Excess gas

• Trouble swallowing

  Your diet plan after surgery is designed to lessen your discomfort and allow you to enjoy eating.

  What type of diet will I have?

  You will have several types of diet. Your diet will change slowly based on your rate of recovery and how well you can tolerate food. The amount of liquids that you are permitted to have at one time will vary based on your doctor's recommendation. In general, your diet plan will advance as follows:

 1.     Clear liquid diet, for the first few days after surgery

 2.     Full liquid diet

 3.     Soft diet

 Each person tolerates food in a different way. Your doctor will advance your diet plan based upon your progress after surgery...”

____________________________________________________________________________

3.  http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx

“Dumping Syndrome Diet

 Dumping syndrome sometimes happens after stomach surgery.

 Dumping syndrome is caused by large amounts of food passing quickly into the small intestine. This causes symptoms like abdominal pain, cramping, nausea, diarrhea, dizziness, weakness, rapid heart beat, and fatigue. This diet will help stop the symptoms of dumping syndrome…”

_________________________________________________________________________________

 4.  http://www.oncolink.org/coping/article.cfm?c=3&s=64&ss=158&id=989

 

“Post-Esophagectomy Diet

 Karen Wagner, MS, RD, LDN and Katrina Claghorn, MS, RD, LDN- Abramson Cancer Center of the University of Pennsylvania
Last Modified: December 23, 2014

 Esophagectomy is a surgery to remove all or part of the esophagus, which is the tube food moves through on its way from the mouth to the stomach. When the esophagus is removed, the stomach is pulled up into the chest and reattached to keep the food passageway intact. This stretching of the stomach takes away the ability to eat large meals, as there is no longer a large "holding area" for food to be digested. Nutrition is an important part of healing and preventing weight loss after surgery. Patients can experience nausea, vomiting, acid reflux, and dumping syndrome. This article will review some ways to decrease these symptoms. Check with your healthcare team for specific recommendations for your case.

 After the surgery, the remaining esophagus may not be able to move foods as easily from your mouth to your stomach. Certain foods can block the esophagus or be difficult to swallow. Some people complain of food "sticking", or have midsternal (behind the breast bone) pain. This may be prevented or resolved by sipping fluids when eating solid foods, chewing foods well, eating soft or chopped foods and avoiding tough, gummy, or stringy foods.

 You may also get gastroesophageal reflux symptoms, such as heartburn and reflux of stomach contents, causing intolerance to certain foods, especially acidic, fatty, and very hot or very cold foods. Gas and bloating sometimes occur after surgery. Therefore, you may wish to avoid foods that are known to cause gas.

 Each person is different and will tolerate different foods. Only you can decide which foods 'agree' with you and which don't. Below are ideas that may help you to manage your symptoms. The most important guide is how you feel after eating a food…”

 

                                                End of references

 

 

 

 

wealth of info

Thanks, Loretta, for sharing such a comprehensive reply to Rhonda.  Your husband's and my experiences sound similar, except I had the more invasive 2-incision surgery.  I'm totally new to this site & hope to learn how to navigate it to find valuable information and replies to my posts.

CorgiMom

csacerdote said:

Problems following Surgery

I am 54 years old and was diagnosed with esophageal cancer late last year.  I underwent chemo/radiation therapy in February/March, then esophagectomy surgery at Sloan Kettering in April.

I was discharged 10 days following surgery, but developed a major complication 1-1/2 days after returning home.  My right lung collapsed as a result of "acute leak-induced pneumonia".  (A drink/leak test was never performed prior to discharge.)  I wound up spending another 2 weeks in the hospital, undergoing enormous pain as they tried to drain my abdominal cavity.

Thankfully that's behind me now, although I'm far from out of the woods.  I keep loosing weight - can't eat enough to sustain - and have fallen into a very bad depression.  I've suffered from depression before, and got back onto the a-d drug that's worked for me in the past - prozac.  But I'm still very down, which is probably related to the fact that I can't eat enough.

This process has taken months, I really don't feel better, and I've begun to lose hope.  Any words of advice or hope or encouragement would certainly be appreciated.

Thank you - Craig

 

similar situation

Craig--I just joined this site because I, too, am feeling frustrated.  I had pre-op chemo-radiation in Oct 2015 and surgery on January 12, 2016, so I'm a few months ahead of you.  I just started B12 injections and am working with a nutritionist to tweak my diet for more calorie/nutrient dense foods.  I drink Ensure, but it does not agree with me at all. From all my reading, it sounds like our recoveries take time.  I'm 6 months today and my ribs hurt constantly; my orthopedists says they take a year sometimes to totally heal.  Nevertheless, I'm trying to focus on the present and not get too depressed over feeling less than well.  Finding this site may be a valuable resource.  I wish you the best.

LorettaMarshall

John~Adenocarcinoma is the MOST COMMON Esophageal Cancer in USA

Dear John:

Pardon me but I must take issue with the article by “Placidway” that you posted today (January 29, 2016 http://csn.cancer.org/node/298089  in which it was stated:  “…Squamous Cell Carcinoma (Most Common Type)- Squamous cell carcinoma arises in the middle portion or along the entire esophagus.  Adenocarcinoma - Adenocarcinoma happens when squamous cells (normally found in the esophagus) are replaced by gland cells (mucus-secreting glands), which occurs in the lower portion of the esophagus…  Source: Placidway”

Placid Way appears to be a medical travel agency that arranges treatments in other countries according to this web link

•  http://www.patientsbeyondborders.com/facilitator/placid-way

 “…Placid Way’s top treatments include sports medicine, alternative medicine, cancer treatment and anti-aging care. India, Mexico, Thailand are the destinations most visited by its customers. Placid Way employees speak English, Hindi and Spanish. Forty percent of Placid Way’s customers are from Canada and the United States, and its packages provide extensive travel and hotel booking services… Languages:  English, Spanish, HindiCountries served:  India , Mexico, Thailand…”

That said, only one reference would be sufficient to correct this statement, but I will provide more than one.    Perhaps Squamous Cell might be the main type of Esophageal Cancer in India, Mexico, or Thailand, but here in the United States “ADENOCARCINOMA” is the most common type of Esophageal Cancer.  That fact is verified by links provided below my name.

Respectfully submitted,

Loretta Marshall

Wife of William Marshall diagnosed with Esophageal Cancer Stage III (T3N1M0) “Adenocarcinoma at the GastroEsophageal Junction)

_________________________________________________________

NIH Reference

1.     http://www.cancer.gov/research/progress/snapshots/esophageal

“A Snapshot of Esophageal Cancer - Incidence and Mortality

Esophageal cancer consists of two primary cancer types, esophageal adenocarcinoma and esophageal squamous cell carcinoma. Esophageal adenocarcinoma is more common in the United States. Men of all racial and ethnic groups have higher esophageal cancer incidence and mortality rates than women. Historically, African American men have had higher esophageal cancer incidence and mortality rates than white men; however, increasing incidence and mortality rates in white men and a steady decline among African American men in the past decade have reversed this trend. A downward trend in mortality has not been observed for any other racial/ethnic group.

Risk factors for esophageal cancer include tobacco use, alcohol use, having Barrett's esophagus or gastric reflux disease, and increasing age. Common signs of esophageal cancer include painful or difficult swallowing and unexplained weight loss. There are no standard or routine screening tests for esophageal cancer. Tests and procedures that are used to detect and diagnose esophageal cancer include a physical examination, upper endoscopy, chest x-ray, and a barium swallow test. Standard treatment options for esophageal cancer include surgery, radiation therapy, chemotherapy, chemoradiation therapy, laser therapy, and electrocoagulation.

____________________________________________________________________

This reference is from The American Cancer Society

2.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-what-is-cancer-of-the-esophagus

Esophageal cancer - “Cancer of the esophagus (also referred to as esophageal cancer) starts in the inner layer (the mucosa) and grows outward (through the submucosa and the muscle layer). Since 2 types of cells can line the esophagus, there are 2 main types of esophageal cancer:

“…Squamous cellcarcinoma

The esophagus is normally lined with squamous cells. Cancer starting in these cells is called squamous cell carcinoma. This type of cancer can occur anywhere along the esophagus. Once, squamous cell carcinoma was by far the more common type of esophageal cancer in the United States. This has changed over time, and now it makes up less than half of esophageal cancers in this country.

Adenocarcinoma

Cancers that start in gland cells are called adenocarcinomas.This type of cell is not normally part of the inner lining of the esophagus. Before an adenocarcinoma can develop, gland cells must replace an area of squamous cells, which is what happens in Barrett’s esophagus. This occurs mainly in the lower esophagus, which is where most adenocarcinomas start.

Adenocarcinomas that start at the area where the esophagus joins the stomach (the GE junction, which includes about the first 2 inches of the stomach called the cardia), tend to behave like cancers in the esophagus (and are treated like them, as well), so they are grouped with esophagus cancers…”

________________________________________________________

 

This reference is from Cancer Treatment Centers of America.

3.   http://www.cancercenter.com/esophageal-cancer/types/?source=GOOGLPPC&channel=paid+search&c=paid+search:Google:Sitelink_k_clickid=5715e1bc-f94a-4140-988c-5b6aa800ab0c

Esophageal cancer types

“…Every esophageal cancer patient is different. The cancer experts at Cancer Treatment Centers of America (CTCA) have extensive experience in properly staging and diagnosing the disease, and developing a treatment plan that's tailored to your specific type of esophageal cancer.

Types of esophageal cancer

Adenocarcinoma is the most common type of esophageal cancer. This type of cancer forms in glandular cells in the lining of the esophagus that release mucus. It typically develops in the lower part of the esophagus, closer to the stomach.

Squamous cell carcinoma develops in the flat cells that line the esophagus. This type of esophageal cancer is typically found in the upper and middle parts of the esophagus…”

______________________________________________________________________

This link is from MAYO CLINIC

4.  http://www.mayoclinic.org/diseases-conditions/esophageal-cancer/basics/definition/con-20034316

Definition  By Mayo Clinic Staff

“Esophageal cancer is cancer that occurs in the esophagus — a long, hollow tube that runs from your throat to your stomach. Your esophagus carries food you swallow to your stomach to be digested.

Esophageal cancer usually begins in the cells that line the inside of the esophagus. Esophageal cancer can occur anywhere along the esophagus, but in people in the United States, it occurs most often in the lower portion of the esophagus. More men than women get esophageal cancer.

Esophageal cancer isn't common in the United States. In other areas of the world, such as Asia and parts of Africa, esophageal cancer is much more common…”

_______________________End of References___________________________

 

paul61

Craig,

Like Ed, I am amazed that your surgeon did not order a “swallow test” to check for leaks.

In any case, recovery from a surgery this invasive takes much longer than we would like, and often, much longer than our surgeon suggests it might take. Irrespective of what surgical approach is taken, traditional Ivor Lewis, or minimally invasive laparoscopic, the impact on the inside of our bodies is the same.

I lost over 30% of my body weight between chemotherapy and surgery, and I was at the optimal weight for my height when I started treatment. I was also very depressed after surgery and had frequent “dumping syndrome” events for the first year. I had pain in my back and numbness in my rib cage for almost a year after surgery as well.

But things do get better gradually, unfortunately much slower than we would like.

I first had to learn that I was not going to feel hungry again. I learned I had to treat food like a medication that I needed to ingest at predefined amounts, on schedule, weather I had an appetite or not. I defined a schedule that included six small meals a day that included a mixture of protein, fruits and vegetables, and complex carbohydrates. I followed that schedule even when eating was the last thing that sounded good to me.

When diagnosed I weighed 150 lbs. After surgery and chemotherapy I weighed 108 lbs. One year after surgery I was back to about 120 lbs. but I did not start to gain weight until the last few months of that year. I am now back to about 135 lbs. which appears to be my “new normal” weight.

I learned that I needed to take things “one day at a time” sometimes “one hour at a time” some days were good days and some days not so good. But as time progressed the good days came along more frequently. But I have to admit it was over a year before I felt I had gotten back to about 80% of where I was before I was diagnosed.

The numbness and back pain gradually improved over about a two year period, but I am still an excellent barometer.  When the weather turns cold and damp the surgical adhesions that remain from my surgery stiffen and ache.

Unfortunately we just have to be patient with recovery, but fortunately we are still here to enjoy time with the people we love, and over time to enjoy the things that bring us pleasure.

I am now over six years past surgery and can eat anything I want; in smaller quantities of course. I am back to enjoying the physical things I like. Daily walks, golf, and working in the yard. I have to take things a little slower and listen to my body but some of that could be because I am almost 68 years old.

Try to keep a positive perspective.

Recognize that all days will be good days but not all days will be bad days either.

Have patience with yourself.

Take things one day at a time.

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Six Year Survivor

 

csacerdote

Dear Ed, CorgiMom, and Paul:

Dear Ed, CorgiMom, and Paul:

Thank you all for sharing your experiences and advice.  My surgeon had what sounded like legitimate reasons for not doing the drink/leak test.  But in the end it was a mistake.  The collapsed lung was the most painful and terrifying experience I ever underwent.  And after I was finally stabilized, the pulmonary experts told me I was lucky - the outcome is not often a positive one.  (In other words, the pneumonia resulting from the leak may very well have killed me.)  I believe the collapse lung experience and hearing those words triggered my depression - almost a post traumatic stress response.

I remember the surgeon initially telling me 4 - 6 weeks was the normal recovery time, which I thought was excessive!  Boy was he wrong - from what I'm reading, it sounds like 4 - 6 months would be very optimistic.  He also never shared all the possible complications and difficulties that can and do result.  My latest was a procedure 2 weeks ago to cut the muscle at the end of my stomach.  Apparently it remained frozen following initial surgery, and food would not drain to the small intestine.

Food is draining properly now, although I also have a dumping problem.  Today I was prescribed an anti-dumping med that hopefully will work.  Ensure and other dairy-based supplements and foods go right through me, which certainly isn't helping my weight problem.  (I was 200~210 lbs before diagnosis, 165 lbs following chemo/radiation, and 140 lbs now.  Pretty scary to me!)

Thank you all again.  Please keep in touch.

 

CorgiMom

paul61 said:

Craig,

Like Ed, I am amazed that your surgeon did not order a “swallow test” to check for leaks.

In any case, recovery from a surgery this invasive takes much longer than we would like, and often, much longer than our surgeon suggests it might take. Irrespective of what surgical approach is taken, traditional Ivor Lewis, or minimally invasive laparoscopic, the impact on the inside of our bodies is the same.

I lost over 30% of my body weight between chemotherapy and surgery, and I was at the optimal weight for my height when I started treatment. I was also very depressed after surgery and had frequent “dumping syndrome” events for the first year. I had pain in my back and numbness in my rib cage for almost a year after surgery as well.

But things do get better gradually, unfortunately much slower than we would like.

I first had to learn that I was not going to feel hungry again. I learned I had to treat food like a medication that I needed to ingest at predefined amounts, on schedule, weather I had an appetite or not. I defined a schedule that included six small meals a day that included a mixture of protein, fruits and vegetables, and complex carbohydrates. I followed that schedule even when eating was the last thing that sounded good to me.

When diagnosed I weighed 150 lbs. After surgery and chemotherapy I weighed 108 lbs. One year after surgery I was back to about 120 lbs. but I did not start to gain weight until the last few months of that year. I am now back to about 135 lbs. which appears to be my “new normal” weight.

I learned that I needed to take things “one day at a time” sometimes “one hour at a time” some days were good days and some days not so good. But as time progressed the good days came along more frequently. But I have to admit it was over a year before I felt I had gotten back to about 80% of where I was before I was diagnosed.

The numbness and back pain gradually improved over about a two year period, but I am still an excellent barometer.  When the weather turns cold and damp the surgical adhesions that remain from my surgery stiffen and ache.

Unfortunately we just have to be patient with recovery, but fortunately we are still here to enjoy time with the people we love, and over time to enjoy the things that bring us pleasure.

I am now over six years past surgery and can eat anything I want; in smaller quantities of course. I am back to enjoying the physical things I like. Daily walks, golf, and working in the yard. I have to take things a little slower and listen to my body but some of that could be because I am almost 68 years old.

Try to keep a positive perspective.

Recognize that all days will be good days but not all days will be bad days either.

Have patience with yourself.

Take things one day at a time.

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Six Year Survivor

 

Thanks, Paul

Paul--Your comments are so very encouraging and make me feel not so alone in all this.  I have a follow-up upper GI endoscopy in 2 weeks to be sure my esophagus is open (stent was removed on 6/30) and then my first follow-up CT scan 2 days later.  It's a lot to go through in one week.  I'll admit that I'm nervous about the CT scan; I hope nothing new shows up.  No doubt, my overall sense of well being will improve if I learn that I'm cancer-free.  If not, then I'll just have to take one day at a time and trust my docs.

Oh..I'm orignally from SC and embrace my roots!

Thanks again.

LorettaMarshall

csacerdote said:

Problems following Surgery

I am 54 years old and was diagnosed with esophageal cancer late last year.  I underwent chemo/radiation therapy in February/March, then esophagectomy surgery at Sloan Kettering in April.

I was discharged 10 days following surgery, but developed a major complication 1-1/2 days after returning home.  My right lung collapsed as a result of "acute leak-induced pneumonia".  (A drink/leak test was never performed prior to discharge.)  I wound up spending another 2 weeks in the hospital, undergoing enormous pain as they tried to drain my abdominal cavity.

Thankfully that's behind me now, although I'm far from out of the woods.  I keep loosing weight - can't eat enough to sustain - and have fallen into a very bad depression.  I've suffered from depression before, and got back onto the a-d drug that's worked for me in the past - prozac.  But I'm still very down, which is probably related to the fact that I can't eat enough.

This process has taken months, I really don't feel better, and I've begun to lose hope.  Any words of advice or hope or encouragement would certainly be appreciated.

Thank you - Craig

 

Craig~Look 4 my "short" reply (NOT) on separate topic line here!

 

Dear Craig: 

 

Since my “short letter” is so long, I chose to answer you on a separate topic all its own.  You can find my reply here:  http://csn.cancer.org/node/303734

 

Moreover, it’s always best that when a “newbie” visits the site, that they give us a bit of info on the “about me” page, so that we can know more about your diagnosis and previous treatments.  However, since I have been corresponding with your devoted brother “David” on a more private exchange, I already knew more than you shared with us in your first letter.  However, I recognized you immediately.  I’ve taken the liberty of making public some of the horrendous happenings in your life as a result of your MIE surgery gone awry! 

 

As I stated in my response to you, “your story by far exceeds anything I have read before.”  And so our friends will understand better “where you are coming from and why your depression is so understandably deep.”  Your situation is just the exact opposite of the “normal recovery” for especially an MIE patient.  One can only imagine if you were having to recover from the most invasive of Esophagectomies, the Ivor Lewis Esophagectomy- technically called the “TransThoracic Esophagectomy” – (TTE) which involves 2 massive incisions!

 

So once more, I say, “I’m really glad you wrote.”  Remember the childhood fairy tales that always ended in “And they lived happily ever after?”  Well that’s exactly how all of us here on the site are praying that your story will end!

 

Love & prayers from me and my husband William

 

Loretta Marshall

 

 (Wife of William – “EC T3N1M0” who is now enjoying his 14^th year of remission with no evidence of disease (NED).  Ivor Lewis Minimally Invasive Esophagectomy (MIE) performed by Dr. James D. Luketich at the University of Pittsburgh Medical Center (UPMC) on May 17, 2003.)

 

 

 

LorettaMarshall

csacerdote said:

Dear Ed, CorgiMom, and Paul:

Dear Ed, CorgiMom, and Paul:

Thank you all for sharing your experiences and advice.  My surgeon had what sounded like legitimate reasons for not doing the drink/leak test.  But in the end it was a mistake.  The collapsed lung was the most painful and terrifying experience I ever underwent.  And after I was finally stabilized, the pulmonary experts told me I was lucky - the outcome is not often a positive one.  (In other words, the pneumonia resulting from the leak may very well have killed me.)  I believe the collapse lung experience and hearing those words triggered my depression - almost a post traumatic stress response.

I remember the surgeon initially telling me 4 - 6 weeks was the normal recovery time, which I thought was excessive!  Boy was he wrong - from what I'm reading, it sounds like 4 - 6 months would be very optimistic.  He also never shared all the possible complications and difficulties that can and do result.  My latest was a procedure 2 weeks ago to cut the muscle at the end of my stomach.  Apparently it remained frozen following initial surgery, and food would not drain to the small intestine.

Food is draining properly now, although I also have a dumping problem.  Today I was prescribed an anti-dumping med that hopefully will work.  Ensure and other dairy-based supplements and foods go right through me, which certainly isn't helping my weight problem.  (I was 200~210 lbs before diagnosis, 165 lbs following chemo/radiation, and 140 lbs now.  Pretty scary to me!)

Thank you all again.  Please keep in touch.

 

csacerdote~U R part of our family & we've "got your back" !

Hi Craig -

See my note to your first entry and my reply on a separate topic line.

http://csn.cancer.org/node/303734

All the best,

Loretta Marshall

csacerdote

LorettaMarshall said:

Craig~Look 4 my "short" reply (NOT) on separate topic line here!

 

Dear Craig: 

 

Since my “short letter” is so long, I chose to answer you on a separate topic all its own.  You can find my reply here:  http://csn.cancer.org/node/303734

 

Moreover, it’s always best that when a “newbie” visits the site, that they give us a bit of info on the “about me” page, so that we can know more about your diagnosis and previous treatments.  However, since I have been corresponding with your devoted brother “David” on a more private exchange, I already knew more than you shared with us in your first letter.  However, I recognized you immediately.  I’ve taken the liberty of making public some of the horrendous happenings in your life as a result of your MIE surgery gone awry! 

 

As I stated in my response to you, “your story by far exceeds anything I have read before.”  And so our friends will understand better “where you are coming from and why your depression is so understandably deep.”  Your situation is just the exact opposite of the “normal recovery” for especially an MIE patient.  One can only imagine if you were having to recover from the most invasive of Esophagectomies, the Ivor Lewis Esophagectomy- technically called the “TransThoracic Esophagectomy” – (TTE) which involves 2 massive incisions!

 

So once more, I say, “I’m really glad you wrote.”  Remember the childhood fairy tales that always ended in “And they lived happily ever after?”  Well that’s exactly how all of us here on the site are praying that your story will end!

 

Love & prayers from me and my husband William

 

Loretta Marshall

 

 (Wife of William – “EC T3N1M0” who is now enjoying his 14^th year of remission with no evidence of disease (NED).  Ivor Lewis Minimally Invasive Esophagectomy (MIE) performed by Dr. James D. Luketich at the University of Pittsburgh Medical Center (UPMC) on May 17, 2003.)

 

 

 

Thank you so much, Loretta. 

Thank you so much, Loretta.  I will read your other topic/post shortly.

My brother David has been my advocate and guardian angel through all of this, and words can't express the love and thanks I have for him.

 

paul61

csacerdote said:

Dear Ed, CorgiMom, and Paul:

Dear Ed, CorgiMom, and Paul:

Thank you all for sharing your experiences and advice.  My surgeon had what sounded like legitimate reasons for not doing the drink/leak test.  But in the end it was a mistake.  The collapsed lung was the most painful and terrifying experience I ever underwent.  And after I was finally stabilized, the pulmonary experts told me I was lucky - the outcome is not often a positive one.  (In other words, the pneumonia resulting from the leak may very well have killed me.)  I believe the collapse lung experience and hearing those words triggered my depression - almost a post traumatic stress response.

I remember the surgeon initially telling me 4 - 6 weeks was the normal recovery time, which I thought was excessive!  Boy was he wrong - from what I'm reading, it sounds like 4 - 6 months would be very optimistic.  He also never shared all the possible complications and difficulties that can and do result.  My latest was a procedure 2 weeks ago to cut the muscle at the end of my stomach.  Apparently it remained frozen following initial surgery, and food would not drain to the small intestine.

Food is draining properly now, although I also have a dumping problem.  Today I was prescribed an anti-dumping med that hopefully will work.  Ensure and other dairy-based supplements and foods go right through me, which certainly isn't helping my weight problem.  (I was 200~210 lbs before diagnosis, 165 lbs following chemo/radiation, and 140 lbs now.  Pretty scary to me!)

Thank you all again.  Please keep in touch.

 

Some "Eating" suggestions that may be helpful

Craig,

After my surgery, I had a real challenge gaining weight because I struggled with “dumping syndrome” on almost a daily basis.

Two things that helped:

First my oncologist wrote me a prescription for Lomotil (an antidiarrheal) that I took after each of my larger meals (breakfast, lunch, and dinner). Note that I did not wait until I felt a “dumping” event coming on; I took the Lomotil before things started to happen.

Second I drank a high protein, high calorie smoothie my wife made for me each day that contained:
A banana, 4 large strawberries, 1/2 cup half and half, 1 tablespoon of chia seeds, two scoops of protein powder.

 

I know you will probably smile about the chia seeds but in fact chia seeds are an excellent source of nutrition; and more importantly, they absorb over twice their weight in water (which helps slow things down in our digestive tract.)

 Here is an example of my daily eating schedule:

 

Breakfast                  1 egg scrambled, ½ bagel with peanut butter, grape juice
Mid morning snack     six crackers with peanut butter
Lunch                        ½ ham and cheese sandwich, Fritos, with diet soft drink
Afternoon snack         Two handfuls of “trail mix” (nuts, dried fruit, yogurt)
Late afternoon snack   Smoothie as described above
Dinner                       Small piece of chicken, corn, small salad, Ice Tea
Evening snack            1 apple peeled and sliced into sections
Late evening snack     1 cup of yogurt
 
You will notice I eat about every 2 ½ hours (I am still doing this six years later because it works best for me)

 

Things I avoid that cause “dumping”:

Nutritional drinks high in sugar or dairy (Think Ensure)
Foods high in simple sugar (candy bars, ice cream, deserts, and many processed breakfast foods)
Spicy foods or foods that contain sauces or gravy toppings
Foods that contain baking soda or similar additives (Think pancakes)

 

When I eat a meal I eat protein first and then carbohydrates, our systems process protein slower than carbohydrates.

When I eat, I put my fork down between bites and give myself lots of time to chew each mouthful completely. I find if I don't chew completely I have abdominal pain and sometimes dumping.

I drink very little with meals, I drink liquids a hour after meals. I try to drink a full glass of water a hour after eating. 

I know this sounds a bit strange, but it worked for me, and I have recommended it to several other survivors recovering from surgery, and it has worked for them.

Unfortunately, many of the things that people try to get us to eat when they are trying to get calories into us quickly, create problems with our modified digestive system.

I hope some of these suggestions are helpful.

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009

Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU

 

Six Year Survivor

paul61

CorgiMom said:

Thanks, Paul

Paul--Your comments are so very encouraging and make me feel not so alone in all this.  I have a follow-up upper GI endoscopy in 2 weeks to be sure my esophagus is open (stent was removed on 6/30) and then my first follow-up CT scan 2 days later.  It's a lot to go through in one week.  I'll admit that I'm nervous about the CT scan; I hope nothing new shows up.  No doubt, my overall sense of well being will improve if I learn that I'm cancer-free.  If not, then I'll just have to take one day at a time and trust my docs.

Oh..I'm orignally from SC and embrace my roots!

Thanks again.

That is a lot of "medical fun" in one week

CorgiMom

I know what you mean about lots of medical tests on one week. Lots of waiting, then tests, and then more waiting.

Lovely, Scanxiety, after six years of tests and scans, I still never get comfortable with the process.

The good news is at least there is no “prep” involved in either of the two tests you are going to have. Other than nothing to eat after midnight for the endoscopy, and the wonderful stuff you have to drink just before the CT scan.

I like the endoscopy because I am asleep when they do that so it is over before I know it.

 The most difficult process for me is the wait for the results after the test.  

 I hope things go well and you have “good news” results.

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Six Year Survivor

 

csacerdote

paul61 said:

Some "Eating" suggestions that may be helpful

Craig,

After my surgery, I had a real challenge gaining weight because I struggled with “dumping syndrome” on almost a daily basis.

Two things that helped:

First my oncologist wrote me a prescription for Lomotil (an antidiarrheal) that I took after each of my larger meals (breakfast, lunch, and dinner). Note that I did not wait until I felt a “dumping” event coming on; I took the Lomotil before things started to happen.

Second I drank a high protein, high calorie smoothie my wife made for me each day that contained:
A banana, 4 large strawberries, 1/2 cup half and half, 1 tablespoon of chia seeds, two scoops of protein powder.

 

I know you will probably smile about the chia seeds but in fact chia seeds are an excellent source of nutrition; and more importantly, they absorb over twice their weight in water (which helps slow things down in our digestive tract.)

 Here is an example of my daily eating schedule:

 

Breakfast                  1 egg scrambled, ½ bagel with peanut butter, grape juice
Mid morning snack     six crackers with peanut butter
Lunch                        ½ ham and cheese sandwich, Fritos, with diet soft drink
Afternoon snack         Two handfuls of “trail mix” (nuts, dried fruit, yogurt)
Late afternoon snack   Smoothie as described above
Dinner                       Small piece of chicken, corn, small salad, Ice Tea
Evening snack            1 apple peeled and sliced into sections
Late evening snack     1 cup of yogurt
 
You will notice I eat about every 2 ½ hours (I am still doing this six years later because it works best for me)

 

Things I avoid that cause “dumping”:

Nutritional drinks high in sugar or dairy (Think Ensure)
Foods high in simple sugar (candy bars, ice cream, deserts, and many processed breakfast foods)
Spicy foods or foods that contain sauces or gravy toppings
Foods that contain baking soda or similar additives (Think pancakes)

 

When I eat a meal I eat protein first and then carbohydrates, our systems process protein slower than carbohydrates.

When I eat, I put my fork down between bites and give myself lots of time to chew each mouthful completely. I find if I don't chew completely I have abdominal pain and sometimes dumping.

I drink very little with meals, I drink liquids a hour after meals. I try to drink a full glass of water a hour after eating. 

I know this sounds a bit strange, but it worked for me, and I have recommended it to several other survivors recovering from surgery, and it has worked for them.

Unfortunately, many of the things that people try to get us to eat when they are trying to get calories into us quickly, create problems with our modified digestive system.

I hope some of these suggestions are helpful.

Best Regards,

Paul Adams

McCormick, South Carolina

 

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009

Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU

 

Six Year Survivor

Your suggestions are just

Your suggestions are just what I needed today, Paul.  Thank you very much.  I'm about to run to the store, wondering which foods to get.

My surgeon just prescribed an anti-dumping med.  I'm still waiting for it to arrive at the local pharmacy.

Yogurts, chicken/beef, and pastas seem to go down well for me.

I also dump the Ensure - unfortunate since it contains a lot of calories and nutrients.  Likewise for the processed breakfast foods - my wife got pound cake and muffins, and they seem to go right through me.

Thanks again, Paul.  I'll give your suggestions a try.

 

LorettaMarshall

CorgiMom said:

wealth of info

Thanks, Loretta, for sharing such a comprehensive reply to Rhonda.  Your husband's and my experiences sound similar, except I had the more invasive 2-incision surgery.  I'm totally new to this site & hope to learn how to navigate it to find valuable information and replies to my posts.

"Corgi"~I can keep up w/U btr if U start a new topic line

 Good afternoon “Corgi”

 Hopefully you will find info here that will help you on your recovery process and your new way of life.  Having just read Paul’s letter, I concur wholeheartedly.  Paul is hoping to “catch up” with my husband William, who is now 79 years old, and in his 14^th year of remission.  Naturally, I hope both of them “finish their course” and “keep the faith” and enter the gates of Heaven at their “appointed time” cancer free!  I hope the same for you. 

             May I make a suggestion as to best how to find answers to your questions, and “navigate this site.”  It would be easier for all of us if each time a “newbie” comes on the site that they would “start their own NEW topic line.”  That way, you could always know where you started, and it would make things easier for us who are trying to keep up with each one who needs help.  Now if you want to make a comment on another’s post, well and good, but if you want to keep a dialogue going for your own personal use, that’s the best way to go.  Paul and I are “old timers” now, and have already been where you are going, so you’ll find us all over the place.  I’m trying to say, I don’t want to miss anyone, and sometimes I miss some.

             Just a word of caution about your CT Scans, if your doctor orders one that calls for “contrast”, be sure you drink lots of liquid for at least the next 24 hours to “flush your kidneys”.  And I’ve found that I can drink the “stuff” more quickly if I use a huge drinking straw, about the size of my small finger.  So I keep the contrast in the fridge.  I can “stomach” it better when it’s cold.  Also I make my appointments in the afternoon after 1:00 P.M.  That way the schedule works out so I can have breakfast in the morning.  And after having at least 11 scans thus far since my own cancer diagnosis in 2012, I can tell you that they also cause diarrhea for the next day or so as well.  At least that is the “side” effect, or should I say “bottom” line for me.

             Wishing for you every success, and scans that always read “no evidence of disease” (NED).  Happy to have you on board. 

 Loretta Marshall – William’s wife (DX Adenocarcinoma at the Gastroesophageal junction) Stage III (T3N1M0)- Ivor Lewis Minimally Invasive Esophagectomy @ University of Pittsburgh Med. Ctr. (UPMC) on May 17, 2003.  So far—so good—thank God!            

 P.S.  A bit of info on the "about me" page is always helpful for me when a "newbie" comes aboard.  That way I know a bit more about their DX, when and where they were diagnosed, and what treatments and/or surgery they have had. 

 

csacerdote

csacerdote said:

Your suggestions are just

Your suggestions are just what I needed today, Paul.  Thank you very much.  I'm about to run to the store, wondering which foods to get.

My surgeon just prescribed an anti-dumping med.  I'm still waiting for it to arrive at the local pharmacy.

Yogurts, chicken/beef, and pastas seem to go down well for me.

I also dump the Ensure - unfortunate since it contains a lot of calories and nutrients.  Likewise for the processed breakfast foods - my wife got pound cake and muffins, and they seem to go right through me.

Thanks again, Paul.  I'll give your suggestions a try.

 

Hi Paul:

Hi Paul:

My surgeon prescribed paragoric, which I've been taking for several days now.  I was hoping it would help with drinking Ensure, since Ensure gives you the most bang-for-the-buck in terms of calories, protein, and nutrients.  But no such luck.  Although it appears to delay dumping, I still dump the Ensure an hour after drinking it.  I may discontinue the paragoric entirely since I'm really not dumping the other things I'm currently eating.

What seems to work now is...

Yogurt with fruit
Granola with a little milk
Rice (various types)
Bread/bagels
Pasta with meat (ground beef)
Fish
Non-cream soups

Ensure and sugary cakes/muffins definitely don't work.  My biggest problem now is consistently getting adequate calories without the Ensure.  It's going to be tough.

CorgiMom

csacerdote said:

Hi Paul:

Hi Paul:

My surgeon prescribed paragoric, which I've been taking for several days now.  I was hoping it would help with drinking Ensure, since Ensure gives you the most bang-for-the-buck in terms of calories, protein, and nutrients.  But no such luck.  Although it appears to delay dumping, I still dump the Ensure an hour after drinking it.  I may discontinue the paragoric entirely since I'm really not dumping the other things I'm currently eating.

What seems to work now is...

Yogurt with fruit
Granola with a little milk
Rice (various types)
Bread/bagels
Pasta with meat (ground beef)
Fish
Non-cream soups

Ensure and sugary cakes/muffins definitely don't work.  My biggest problem now is consistently getting adequate calories without the Ensure.  It's going to be tough.

high calorie product

I started working with a nutrionist last week to fine tune my diet so I get more nutrient/calorie dense foods.  While I don't dump Ensure, it does make my pulse race and saps my energy.  I think it's the sugar spike.  My nutritionist suggested a product called Benecalorie and I've ordered it.  It comes in powder & liquid and a single 1.5 oz serving packs 330 calories.  Reviews say it's mostly tasteless.  I'm anxious for the order to arrive & try mixing it with soup or a shake.  Maybe you can investigate & if I can remember after trying it, I'll report back.