New Diagnosis
35 years old, never smoker, have Barrett's, and so does my dad. Just got my diagnosis on Wednesday, CT scan on Friday, and here I am joining this group. I don't know much yet, I was having trouble swallowing two weeks ago, and went to see my doctor, and after more visits to the doctor than I've had before, I'm here. Still not staged yet, don't know how the CT scan went, don't really know what's next. I guess I'm just saying hello, and I hope to be active here for years to come. Thanks.
Comments
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Welcome to the group No-one wants to join
Hello and welcome to the group. I am sorry you need to be here.
It sounds like you must had had an endoscopy and your doctor has gotten the results of the biopsy report. At this point they should know if your esophageal cancer is "adenocarcinoma" or "squamous cell" carcinoma.
Next are the results of the CT scan to determine if there is metastasis; and potentially an endoscopic ultra sound to determine how deeply the esophageal tumor has penetrated into the layers of the esophagus. You should get a staging identifier that should consist of the letter “T” and a number, the letter “N” and a number, and the letter “M” and a number. This identifier will tie to a specific “stage” of cancer development, and will determine the treatment plan.
I will not try to convince you that cancer treatment is easy; it is not. But it is survivable, and many times very effective. Taking things one day at a time, a positive attitude, and a support group of friends and family are key elements of successful treatment, along with finding a knowledgeable medical team.
Esophageal Cancer is a relatively rare cancer in the United States and many doctors are not well versed in the latest treatment approaches and protocols. I would recommend a second opinion at a cancer center that specializes in the treatment of esophageal cancer.
Wishing you the best of luck as your treatment plan moves forward.
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
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Thank youpaul61 said:Welcome to the group No-one wants to join
Hello and welcome to the group. I am sorry you need to be here.
It sounds like you must had had an endoscopy and your doctor has gotten the results of the biopsy report. At this point they should know if your esophageal cancer is "adenocarcinoma" or "squamous cell" carcinoma.
Next are the results of the CT scan to determine if there is metastasis; and potentially an endoscopic ultra sound to determine how deeply the esophageal tumor has penetrated into the layers of the esophagus. You should get a staging identifier that should consist of the letter “T” and a number, the letter “N” and a number, and the letter “M” and a number. This identifier will tie to a specific “stage” of cancer development, and will determine the treatment plan.
I will not try to convince you that cancer treatment is easy; it is not. But it is survivable, and many times very effective. Taking things one day at a time, a positive attitude, and a support group of friends and family are key elements of successful treatment, along with finding a knowledgeable medical team.
Esophageal Cancer is a relatively rare cancer in the United States and many doctors are not well versed in the latest treatment approaches and protocols. I would recommend a second opinion at a cancer center that specializes in the treatment of esophageal cancer.
Wishing you the best of luck as your treatment plan moves forward.
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
Thanks Paul. I've been browsing around here, and you're very active and helpful. It really makes me feel much better about all this. Just got the results of my CT scan from last week, it looks like the cancer hasn't spread anywhere else yet, not even to any lymph nodes. I have an appointment with a thoracic surgeon next Thursday, but they still haven't gotten the radiation specialist or oncologist set up yet. I'm afraid I live too far away from civilization for this to go that well, and I'm leaning toward the larger hospital 2 hours away for my surgery and recovery. Anyway, this place is a huge help. There's only one cancer group I can find around here, and it meets once a month and it's for all types, so no one knows just what this is like. Thank you.
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Sorry you are joining ourcoffeepoet said:Thank you
Thanks Paul. I've been browsing around here, and you're very active and helpful. It really makes me feel much better about all this. Just got the results of my CT scan from last week, it looks like the cancer hasn't spread anywhere else yet, not even to any lymph nodes. I have an appointment with a thoracic surgeon next Thursday, but they still haven't gotten the radiation specialist or oncologist set up yet. I'm afraid I live too far away from civilization for this to go that well, and I'm leaning toward the larger hospital 2 hours away for my surgery and recovery. Anyway, this place is a huge help. There's only one cancer group I can find around here, and it meets once a month and it's for all types, so no one knows just what this is like. Thank you.
Sorry you are joining our club but I think you will find some very knowledgeable people here! Let us know how things go. There are people on here at every stage of the journey. My husband has just had his Ivor-Lewis surgery (T2N0M0). Take it one day at a time.
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Moving Forwardslpmom said:Sorry you are joining our
Sorry you are joining our club but I think you will find some very knowledgeable people here! Let us know how things go. There are people on here at every stage of the journey. My husband has just had his Ivor-Lewis surgery (T2N0M0). Take it one day at a time.
Well, the CT results are good, it hasn't gone anywhere else yet, even the lymph nodes look good for now. I have a PET scan on Monday, a breathing test, and lab work, and I'm meeting with a surgeon on Thursday. Work has been very good to me through this too, even giving me different things to do, as I didn't feel like taking phone calls all day, and sometimes need to get up from my desk and take a phone call from the doctors. Things are going well, except that they still haven't set me up with a visit with an oncologist or radiation specialist yet. I'm feeling good about this though.
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Good luck to you, an earlycoffeepoet said:Moving Forward
Well, the CT results are good, it hasn't gone anywhere else yet, even the lymph nodes look good for now. I have a PET scan on Monday, a breathing test, and lab work, and I'm meeting with a surgeon on Thursday. Work has been very good to me through this too, even giving me different things to do, as I didn't feel like taking phone calls all day, and sometimes need to get up from my desk and take a phone call from the doctors. Things are going well, except that they still haven't set me up with a visit with an oncologist or radiation specialist yet. I'm feeling good about this though.
Good luck to you, an early diagnosis will give you the best chance possible in this type of cancer. Please keep us updated.
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UpdateBinkie22 said:Good luck to you, an early
Good luck to you, an early diagnosis will give you the best chance possible in this type of cancer. Please keep us updated.
The PET scan turned out okay, they thought there may be a bit on one lymph node. They did an EUS to see how much the tumor had permeated the wall, and more biopsies. There were more cancerous polyps further up, and two other lymph nodes that showed traces of cancer as well. I start radiation and chemotherapy on the 24th for five weeks, then they operate 4-5 weeks after the radiation is done.
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Glad to hear the treatment plan is definedcoffeepoet said:Update
The PET scan turned out okay, they thought there may be a bit on one lymph node. They did an EUS to see how much the tumor had permeated the wall, and more biopsies. There were more cancerous polyps further up, and two other lymph nodes that showed traces of cancer as well. I start radiation and chemotherapy on the 24th for five weeks, then they operate 4-5 weeks after the radiation is done.
It is good to hear the testing has been completed and a treatment plan has been defined that includes a tri-modal approach including chemotherapy, radiation, and surgery. Wishing you the best of luck as you complete your pre-operative treatment and move toward surgery.
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 Survivor0 -
Surgery Tomorrowpaul61 said:Glad to hear the treatment plan is defined
It is good to hear the testing has been completed and a treatment plan has been defined that includes a tri-modal approach including chemotherapy, radiation, and surgery. Wishing you the best of luck as you complete your pre-operative treatment and move toward surgery.
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 SurvivorI'm having the minimally invasive esophagectomy tomorrow. They tell me I'll be in the hospital for a week and back to work in 4-6. I'm not sure of that, but it's a good goal. Good luck to everyone on here.
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Best Wishes
Hello,
Just want to pass along my best wishes for your surgery. I hope everything goes smoothly with minimal complications. Let us know how it went.
Thoughts are with you,
Ed
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We'll be remembering you tomorrow- MIE choice is excellentcoffeepoet said:Surgery Tomorrow
I'm having the minimally invasive esophagectomy tomorrow. They tell me I'll be in the hospital for a week and back to work in 4-6. I'm not sure of that, but it's a good goal. Good luck to everyone on here.
Well, hello “Coffeepoet”
I’m not new here but I haven’t answered you on this particular posting. Just want you to know that our heart lept for joy when we read you will be having the MIE. You will be delighted to know that my husband, William Marshall, was diagnosed with Esophageal Cancer (Adenocarcinoma at the Gastroesophageal junction) in November of 2002. Pre-op chemo consisted of Carboplatin and 5-FU. He also had 25 sessions of radiation. After that he went to the University of Pittsburgh Medical Center (UPMC) and had an MIE. As you may know, Dr. James D. Luketich pioneered the MIE back in the mid-90’s. It is now the primary surgery of choice at UPMC.
My husband was in the hospital for 5 days, and downtown shopping with me on Day 8. You will have a “J” tube put in the second section of the small intestine during the surgery. Don’t rush to have it removed. You will need the added nutrition during the first days of your recovery. And if you’re like my husband, you’ll only get to suck on ice chips till you have a swallow test to be certain that there are no leaks at the anastomosis (place where new gastric tube is reconnected shall we say.) That will be your first victory. And even before that probably around 23 lymph nodes will be removed to check for residual cancer. In my husband’s case, he had 23 removed, and there was no sign of residual cancer, so no post-op chemo was recommended.
Now I will tell you that he weighed in at 275 and in 9 months had lost 60 pounds. He has maintained that weight since the first year of his surgery. Since I take pride in not being politically correct, I will say he was “fat” and needed to lose the pounds anyway. But that is not the “recommended diet of choice to lose weight.”
I will tell you that the nurses will have you up and walking in about 18 hours, so expect that. The sooner you’re moving, the better. I will tell you that my husband said this was the “worst pain” he had ever felt when he came out of surgery. I was amazed at all the tubes attached, and will confess he did “look a bit worse for wear”, but in 2 days the pain level had greatly subsided. And what else would one expect after having such a radical readjustment of your inner organs.
My husband is 78. He was 65 when first diagnosed. He is a “poster child” for the Minimally Invasive Esophagectomy. And since his MIE, Dr. Luketich has improved his techniques even further to perfect the surgery. My husband’s surgery consisted of 7 band-aid size cuts. At that time, the one small incision to remove the diseased Esophagus was made on the left side of his neck. But in the past few years, Dr. Luketich has been making that small incision in the side of the chest area instead. This eliminates the possibility of damage to the Pharyngeal and Laryngeal nerves in the neck area.
Just know that we’ve put your name on the calendar for tomorrow to pray that your surgeons will be in the best of health, alert, and with a good night’s sleep. The rest is in the Lord’s hands. We’re praying that all things will go well for you.
Sincerely,
Loretta Marshall (Wife of William) MIE @ UPMC by Dr. James D. Luketich– May 17, 2003- Now entering 14th year of remission and still cancer free! J
P.S. Later on you might want to view how the surgeons actually performed your surgery. So here is one video with Dr. Luketich lecturing a group of surgeons on the latest techniques employed in the MIE. And a video one of his associates who worked with him in the mid-90s by the name of Dr. Ninh Nguyen who operates now out of UC-Irvine in California. These are two excellent videos to let one know how the MIE is performed. The first one is Dr. Luketich’s lecture.
1. http://www.upmcphysicianresources.com/cme-course/minimally-invasive-esophagectomy
_________________________________________________________________________________________________________
2.
https://www.youtube.com/watch?v=hx4hS21AbuI&feature=related Video excerpts of an actual MIE in progress with narration by the Thoracic Surgeon, Dr. Ninh Nguyen. He is a brilliant surgeon as well.
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Sending prayers and positive thoughts for you and your surgeoncoffeepoet said:Surgery Tomorrow
I'm having the minimally invasive esophagectomy tomorrow. They tell me I'll be in the hospital for a week and back to work in 4-6. I'm not sure of that, but it's a good goal. Good luck to everyone on here.
Since your surgery is scheduled for tomorrow I expect you are checked into the hospital this evening and getting your last minute “preps” completed. I am sure there will not be much sleep tonight and I am sure you will be up early tomorrow since they tend to like to do these longer surgeries early in the morning.
I will be thinking of you tomorrow and sending positive thoughts and prayers for you and your surgical team.
I am looking forward to hearing about your successful surgery soon.
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
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Today's one of the most important days of your LIFE!coffeepoet said:Surgery Tomorrow
I'm having the minimally invasive esophagectomy tomorrow. They tell me I'll be in the hospital for a week and back to work in 4-6. I'm not sure of that, but it's a good goal. Good luck to everyone on here.
Good morning “Coffeepoet”
“No coffee for you this Tuesday morning, but something much better!” Today is the “finale” for you after a long journey. Most likely you’re on the operating table and your family and friends are on “pins & needles”.
They anxiously await the results. We pray that when the surgeon comes out to inform the family of how it went, he will say, “Everything went well and there doesn’t appear to be any residual cancer in any of the lymph nodes that were removed.”
In turn, everyone will breathe a huge sigh of relief, and so will you when you get out of recovery. You’ve turned a page and a new chapter begins. Now starts a new journey that many of us are still on. We never take a day for granted anymore, and neither will you. Just wanted you to know, we on this site are keeping you in our prayers especially today!
Loretta Marshall
Wife of William Marshall, EC Stage III (T3N1M0) – MIE @ University of Pittsburgh Med. Ctr., May 17, 2003 by Dr. James D. Luketich- (William now entering14th year of remission.)
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Hi loretta, My husband alsoLorettaMarshall said:We'll be remembering you tomorrow- MIE choice is excellent
Well, hello “Coffeepoet”
I’m not new here but I haven’t answered you on this particular posting. Just want you to know that our heart lept for joy when we read you will be having the MIE. You will be delighted to know that my husband, William Marshall, was diagnosed with Esophageal Cancer (Adenocarcinoma at the Gastroesophageal junction) in November of 2002. Pre-op chemo consisted of Carboplatin and 5-FU. He also had 25 sessions of radiation. After that he went to the University of Pittsburgh Medical Center (UPMC) and had an MIE. As you may know, Dr. James D. Luketich pioneered the MIE back in the mid-90’s. It is now the primary surgery of choice at UPMC.
My husband was in the hospital for 5 days, and downtown shopping with me on Day 8. You will have a “J” tube put in the second section of the small intestine during the surgery. Don’t rush to have it removed. You will need the added nutrition during the first days of your recovery. And if you’re like my husband, you’ll only get to suck on ice chips till you have a swallow test to be certain that there are no leaks at the anastomosis (place where new gastric tube is reconnected shall we say.) That will be your first victory. And even before that probably around 23 lymph nodes will be removed to check for residual cancer. In my husband’s case, he had 23 removed, and there was no sign of residual cancer, so no post-op chemo was recommended.
Now I will tell you that he weighed in at 275 and in 9 months had lost 60 pounds. He has maintained that weight since the first year of his surgery. Since I take pride in not being politically correct, I will say he was “fat” and needed to lose the pounds anyway. But that is not the “recommended diet of choice to lose weight.”
I will tell you that the nurses will have you up and walking in about 18 hours, so expect that. The sooner you’re moving, the better. I will tell you that my husband said this was the “worst pain” he had ever felt when he came out of surgery. I was amazed at all the tubes attached, and will confess he did “look a bit worse for wear”, but in 2 days the pain level had greatly subsided. And what else would one expect after having such a radical readjustment of your inner organs.
My husband is 78. He was 65 when first diagnosed. He is a “poster child” for the Minimally Invasive Esophagectomy. And since his MIE, Dr. Luketich has improved his techniques even further to perfect the surgery. My husband’s surgery consisted of 7 band-aid size cuts. At that time, the one small incision to remove the diseased Esophagus was made on the left side of his neck. But in the past few years, Dr. Luketich has been making that small incision in the side of the chest area instead. This eliminates the possibility of damage to the Pharyngeal and Laryngeal nerves in the neck area.
Just know that we’ve put your name on the calendar for tomorrow to pray that your surgeons will be in the best of health, alert, and with a good night’s sleep. The rest is in the Lord’s hands. We’re praying that all things will go well for you.
Sincerely,
Loretta Marshall (Wife of William) MIE @ UPMC by Dr. James D. Luketich– May 17, 2003- Now entering 14th year of remission and still cancer free! J
P.S. Later on you might want to view how the surgeons actually performed your surgery. So here is one video with Dr. Luketich lecturing a group of surgeons on the latest techniques employed in the MIE. And a video one of his associates who worked with him in the mid-90s by the name of Dr. Ninh Nguyen who operates now out of UC-Irvine in California. These are two excellent videos to let one know how the MIE is performed. The first one is Dr. Luketich’s lecture.
1. http://www.upmcphysicianresources.com/cme-course/minimally-invasive-esophagectomy
_________________________________________________________________________________________________________
2.
https://www.youtube.com/watch?v=hx4hS21AbuI&feature=related Video excerpts of an actual MIE in progress with narration by the Thoracic Surgeon, Dr. Ninh Nguyen. He is a brilliant surgeon as well.
Hi loretta, My husband also had esophageal cancer. He had the transhiatal esophagectomy (THE). Would that be similar to the MIE? Dr. Mark Orriger performed his surgery at U of Michigan.
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Home again
Thanks for all the support. I was in the hospital for 8 days, and then got to come home two days before Thanksgiving. Because I had the J-Tube, they were in no hurry to start anything else, in fact, I'm still on only tube feedings. No ice chips or anything else yet. I have a second follow up appointment with the surgeon (a 2.5 hour drive one way) on Friday, and I may be getting my drain out then. It went well. They tried to have me up and walking at 5:45 AM the morning after the surgery, but there was no way I could move further than from the bed to the chair. By the 3rd day, I was doing several laps around the floor.
Just thought I'd pop in here again and let you all know it went well and I'm doing fine. Looking forward to eating and drinking again soon though, as it's been over 3 weeks since I've had a glass of water.
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Hope U R off your ICE Chips soon-Tips for post-surgical dietcoffeepoet said:Home again
Thanks for all the support. I was in the hospital for 8 days, and then got to come home two days before Thanksgiving. Because I had the J-Tube, they were in no hurry to start anything else, in fact, I'm still on only tube feedings. No ice chips or anything else yet. I have a second follow up appointment with the surgeon (a 2.5 hour drive one way) on Friday, and I may be getting my drain out then. It went well. They tried to have me up and walking at 5:45 AM the morning after the surgery, but there was no way I could move further than from the bed to the chair. By the 3rd day, I was doing several laps around the floor.
Just thought I'd pop in here again and let you all know it went well and I'm doing fine. Looking forward to eating and drinking again soon though, as it's been over 3 weeks since I've had a glass of water.
Good afternoon “CoffeePoet”
At first glance, I thought your name was “Coffee Pot” but upon closer examination, I see that you write poetry while sipping coffee? Anyhow, so glad you made it through the surgery okay. We hope that there was no residual cancer found in any of the lymph nodes removed for examination. If there is even one node with cancer left in it, post-op chemo is recommended always. So that’s always a “yippee yahoo” moment when you find that none was found.
They had my husband up and walking around at the end of his first full day out of surgery. This is good although not welcome words when the nurses say, “ready to go for a walk?” Even though you had the Minimally Invasive Esophagectomy (MIE), different doctors must approach the post-op care differently. My husband had ice chips till day four when he passed the “Barium Swallow Test” and there were no leaks at the anastomosis. He was discharged on Day 5 and we were downtown Pittsburgh shopping on Day 8 after surgery. So you should make rapid improvements soon.
As for the J-tube, it was kept in for 3 weeks and a God-send. My husband’s first “meal” was 2 tablespoonsful of Cream of Wheat. Let’s put it this way, he was fat going into the Operating room (275# @ 6 ft. tall). He lost 60# in the first 9 months after surgery, and then weight leveled out at 215#. That level has been maintained since the end of 2003. So don’t be disheartened. No you won’t be eating any steak any time soon unless you want it blended like baby food. But the hope that all will be back to a “new normal” in time will spur you to follow the doctor’s orders.
Below my name will be a post-op diet recommended by the University of Pittsburgh Medical Center. There will be an additional link that is of equal importance. Due to the “rearrangement of some internal organs” and absence of your Esophagus (all or part) you will more than likely experience problems with your bowels at the very first. I know of no one who has been able to skip this phase. However, we don’t usually cross this bridge until we get to it, and it will be the next hurdle for you. Don’t despair because it will take quite a while for your body to readjust to how it now processes your intake of food.
Today my husband eats anything his heart desires, just in smaller portions and more often during the day. So take the long look and the baby steps you take now will have you back on track. He has no physical limitations except that he is now 78, and some days the body says, “You’re biting off more than you can chew old fella!” You will be the judge of how much you can do how quickly, but basically a change in eating habits and the elevated sleeping position will be the noticeable changes. My husband has no scars. One of the big advantages of an MIE is that there aren’t any big incisions that have to heal .
We met another dear fella on the web who has recently had the Open Ivor Lewis Surgery. He is having quite a time of it relative to strength and eating. We told him about the totally laparoscopic Esophagectomy, but there were relatives who influenced him to choose a doctor that, as I understand it, routinely performed the OPEN Ivor Lewis procedure. Often a patient will be influenced by their familiarity with their physician and his/her recommendations even when the surgeon has not updated his skills to include the MIE. Then, of course, there may be extenuating circumstances that prevent travel, even if the patient wanted to go elsewhere. We understand that also.
And, of course, we can only recommend the MIE, but some post surgical patients now wish they had gone for a Second Opinion with a major medical facility who performs the Minimally Invasive Esophagectomy as their standard practice and has a good record of success. That is why we chose to go to the University of Pittsburgh Medical Center. (Back in 2003 there was no place closer that performed the MIE.) We are acquainted with several patients that have had the MIE. They, and we, could not be happier with that decision.
Once more, so glad to hear from you. Keep on moving and getting up, you will feel better faster!
Loretta
Wife of William Marshall, EC Stage III (T3N1M0) now entering his 14th year of remaining cancer free. (MIE @ UPMC May 17, 2003 by Dr. James D. Luketich)
Links that will be helpful for post-surgical patients.
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http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx
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http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx
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http://www.upmc.com/patients-visitors/education/nutrition/pages/tips-for-increasing-protein-in-your-diet.aspx
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http://www.cancer.gov/publications/patient-education/eating-hints
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http://www.cancer.gov/about-cancer/treatment/side-effects/appetite-loss/nutrition-pdq
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Great to hear things went wellcoffeepoet said:Home again
Thanks for all the support. I was in the hospital for 8 days, and then got to come home two days before Thanksgiving. Because I had the J-Tube, they were in no hurry to start anything else, in fact, I'm still on only tube feedings. No ice chips or anything else yet. I have a second follow up appointment with the surgeon (a 2.5 hour drive one way) on Friday, and I may be getting my drain out then. It went well. They tried to have me up and walking at 5:45 AM the morning after the surgery, but there was no way I could move further than from the bed to the chair. By the 3rd day, I was doing several laps around the floor.
Just thought I'd pop in here again and let you all know it went well and I'm doing fine. Looking forward to eating and drinking again soon though, as it's been over 3 weeks since I've had a glass of water.
It is great to hear that your surgery went well and you are home recuperating. You must have a very conservative surgeon. I was able to drink and eat soft foods after I passed my swallow test 5 days after my surgery. They gave me a popsicle and it sure did taste good!! But nothing wrong with being careful and making sure that things are all healed nicely before you start eating.
Recovery from surgery takes time so you will have to be patient with yourself as your body recovers from the shock of surgery. It took me almost a month before getting out of bed, washing up, shaving and brushing my teeth wore me out so much that I had to sit on the couch and rest for a while.
I started with short walks around the house, then short walks up and down my street, and finally walks around my neighborhood.
Eating normal food took me a while, I had dumping syndrome fairly often for the first couple of months but things gradually got better and now I can eat pretty much anything I want. For the first few months I had to avoid sugar altogether as it would trigger a dumping episode every time I ate anything that contained any amount of sugar.
I see Loretta has given you some excellent references on how to deal with eating and dumping if it occurs. Not everyone has issues with dumping syndrome, I did but it got better with diet control and time.
No discussion about follow up chemo so I assume the pathology report after surgery was good. That is great to hear you now have the difficult time behind you and time to focus on getting stronger and gaining that weight back.
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 Survivor0 -
Finding a new normal
I haven't checked in here for a while, but I went back to work January 3 (Just 6 weeks after surgery, and a week after removing the J-Tube!) but that turned out to be a bit early to try to do full time. I had to work part time for a month and a half before I could work full time again.
Eating is... unpredictable. Overall, I'm down from 208 lbs last February to 150 this January. It fluctuates some now, but right now I'm back up to 156. I tend to lose any gain I've made if I get the flu for a few days, and my immune system still seems to be low. Sometimes I have no problems with some foods, only to have nausea the next day from the same one. Bacon and chocolate are out now though.
I had a CT scan in February, and it came back clear, so that's good. Every 6 months I'll have another. Meeting with my oncologist for the second time since surgery in a couple of weeks.
I got a letter saying the surgeon who did my esophagectomy is leaving May 1, and is being replaced with a much younger one. I'm glad I got the surgeon I did, though the new one may be brilliant as well. I am just glad I got the surgeon who had 30 years experience doing this surgery, rather than the one who graduated from medical school in 2009. Again, I haven't even met the replacement, and I'm sure she's great, I just feel fortunate with the one I had.
So, brief update, and it's going well.
Stage III adenocarcinoma of the esophagus
Diagnosed July 14, 2015
5 weeks paclitaxil and carboplatin
28 treatments of radiation
Iver Lewis performed November 17, 2015 by Dr. Tracey Weigal0 -
CoffeePoet~Good 2 hear U R "perking" right along-Happy 4 Ucoffeepoet said:Finding a new normal
I haven't checked in here for a while, but I went back to work January 3 (Just 6 weeks after surgery, and a week after removing the J-Tube!) but that turned out to be a bit early to try to do full time. I had to work part time for a month and a half before I could work full time again.
Eating is... unpredictable. Overall, I'm down from 208 lbs last February to 150 this January. It fluctuates some now, but right now I'm back up to 156. I tend to lose any gain I've made if I get the flu for a few days, and my immune system still seems to be low. Sometimes I have no problems with some foods, only to have nausea the next day from the same one. Bacon and chocolate are out now though.
I had a CT scan in February, and it came back clear, so that's good. Every 6 months I'll have another. Meeting with my oncologist for the second time since surgery in a couple of weeks.
I got a letter saying the surgeon who did my esophagectomy is leaving May 1, and is being replaced with a much younger one. I'm glad I got the surgeon I did, though the new one may be brilliant as well. I am just glad I got the surgeon who had 30 years experience doing this surgery, rather than the one who graduated from medical school in 2009. Again, I haven't even met the replacement, and I'm sure she's great, I just feel fortunate with the one I had.
So, brief update, and it's going well.
Stage III adenocarcinoma of the esophagus
Diagnosed July 14, 2015
5 weeks paclitaxil and carboplatin
28 treatments of radiation
Iver Lewis performed November 17, 2015 by Dr. Tracey WeigalHi CoffeePoet:
Glad you checked in and sounds like you are progressing normally. The fact that you had no need for post-op chemo is good too. I looked up the name of your surgeon, and looks like you had a great surgeon, who has received lots of awards for being a top doctor. Did you know that you can go on the “Vitals” sight, and write a good review for her, but of course if she is retiring, it will be the end of an era for her. I see she was affiliated with a hospital in Wisconsin as well as in Portland, Maine. It is true that the more years of experience a surgeon has in performing a certain type of surgery, the better it is for the patient. Experience matters. Sounds like you couldn’t have made a better choice. And we are happy that you checked in with us again. We don’t always get a follow-up, but we always wonder how our fella EC friends are faring.
We are always delighted to hear that a patient’s surgery was successful. As for your weight loss, gaining weight is more difficult since you can eat only so much at a time. What is your ideal weight?
Incidentally, earlier you wrote that you were having an MIE, yet you wrote underneath your name that you had an IVOR LEWIS surgery. I’m a little confused. There are two different procedures with the name Ivor Lewis. The original surgery was first introduced by Dr. Ivor Lewis in the mid 1940’s, thus its name. It’s also called the “open” or “TransThoracic Esophagectomy (TTE) and usually just referred to as “Open” or “Ivor Lewis”. This procedure involves 2 very large incisions.
In the mid 1990’s, Dr. James D. Luketich pioneered the first totally-laparoscopic Ivor Lewis esophagectomy that consisted of small Band-aid size incisions. The “formal” name is Ivor Lewis Minimally Invasive Esophagectomy. It’s usually referred to simply as the MIE. https://www.nlm.nih.gov/medlineplus/ency/article/007396.htm
Thanks for putting some of your “vital statistics” under your name. That gives us a better idea of your particular history. Once more, really happy to hear from you and that you’re doing well.
Wishing you continued success,
Loretta Marshall
Wife of William-14 yr. survivor w/NED - EC T3N1M0-Minimally Invasive Esophagectomy (MIE) @ Univ. of Pittsburgh Med. Ctr. (UPMC) May 17, 2003 by Dr. James D. Luketich. _____________________________________________
I see that she has received some prestigious awards, namely:
“Castle Connolly America’s Top Doctors ((2009, 2011 – 2015).
“Castle Connolly America Top Doctor award for cancer in the years (2009, 2011 - 2012, 2014 – 2015).
“Patients’ Choice Award (2014-2015)
“Compassionate Doctor Recognition (2014-2015)
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Oops, of course it was theLorettaMarshall said:CoffeePoet~Good 2 hear U R "perking" right along-Happy 4 U
Hi CoffeePoet:
Glad you checked in and sounds like you are progressing normally. The fact that you had no need for post-op chemo is good too. I looked up the name of your surgeon, and looks like you had a great surgeon, who has received lots of awards for being a top doctor. Did you know that you can go on the “Vitals” sight, and write a good review for her, but of course if she is retiring, it will be the end of an era for her. I see she was affiliated with a hospital in Wisconsin as well as in Portland, Maine. It is true that the more years of experience a surgeon has in performing a certain type of surgery, the better it is for the patient. Experience matters. Sounds like you couldn’t have made a better choice. And we are happy that you checked in with us again. We don’t always get a follow-up, but we always wonder how our fella EC friends are faring.
We are always delighted to hear that a patient’s surgery was successful. As for your weight loss, gaining weight is more difficult since you can eat only so much at a time. What is your ideal weight?
Incidentally, earlier you wrote that you were having an MIE, yet you wrote underneath your name that you had an IVOR LEWIS surgery. I’m a little confused. There are two different procedures with the name Ivor Lewis. The original surgery was first introduced by Dr. Ivor Lewis in the mid 1940’s, thus its name. It’s also called the “open” or “TransThoracic Esophagectomy (TTE) and usually just referred to as “Open” or “Ivor Lewis”. This procedure involves 2 very large incisions.
In the mid 1990’s, Dr. James D. Luketich pioneered the first totally-laparoscopic Ivor Lewis esophagectomy that consisted of small Band-aid size incisions. The “formal” name is Ivor Lewis Minimally Invasive Esophagectomy. It’s usually referred to simply as the MIE. https://www.nlm.nih.gov/medlineplus/ency/article/007396.htm
Thanks for putting some of your “vital statistics” under your name. That gives us a better idea of your particular history. Once more, really happy to hear from you and that you’re doing well.
Wishing you continued success,
Loretta Marshall
Wife of William-14 yr. survivor w/NED - EC T3N1M0-Minimally Invasive Esophagectomy (MIE) @ Univ. of Pittsburgh Med. Ctr. (UPMC) May 17, 2003 by Dr. James D. Luketich. _____________________________________________
I see that she has received some prestigious awards, namely:
“Castle Connolly America’s Top Doctors ((2009, 2011 – 2015).
“Castle Connolly America Top Doctor award for cancer in the years (2009, 2011 - 2012, 2014 – 2015).
“Patients’ Choice Award (2014-2015)
“Compassionate Doctor Recognition (2014-2015)
Oops, of course it was the minimially invasive one. Two surgeons and a robot. Several little incisions, quick recovery. I was up the next morning, and walking 5 laps around the hospital in three days. I was out of the hospital in a week, and back to eating in a month. I'll fix that next time, thanks.
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Hello again~the real MIE is what I thought U meant!coffeepoet said:Oops, of course it was the
Oops, of course it was the minimially invasive one. Two surgeons and a robot. Several little incisions, quick recovery. I was up the next morning, and walking 5 laps around the hospital in three days. I was out of the hospital in a week, and back to eating in a month. I'll fix that next time, thanks.
Hello again -
That's what I like to hear. There is a great deal of difference between the laparoscopic procedure and the 2 big incisions. We try to encourage everyone to consult a Thoracic surgeon who is "proficient" at the Ivor Lewis Minimally Invasive Esophagectomy. (MIE)
A lady wrote here once, and said that her husband was having an "Ivor Lewis", and wanted to know what she could expect. I told her there was a great difference between the Ivor Lewis and the MIE. She said she had never heard of the MIE, and she would ask their surgeon about performing the less invasive procedure. Well, obviously she did consult the surgeon. She replied, "My surgeon said that this MIE MUST BE SOMETHING NEW and that he had never heard of it. He said, he wouldn't TOUCH IT!" And at that point, she chose to believe her doctor, but her husband is the one who had to recuperate!
So, obviously this doctor had not updated his skills, to the point that he had not even HEARD of the laparoscopic procedure that had been around since the mid 1990's. The lady never returned to comment on how the surgery went. The doctors that were trained to perform the oldest of the Esophagectomies, the Ivor Lewis (open), surgery can be very confident that they can perform the surgery. That's not the question for me. Which surgery has the best stats, the quickest recovery, and the least morbidity are most important to me. So while every one cannot have the benefit of going where the MIE is standard procedure, we want them to know that there are choices for this type of surgery, and that "one size doesn't have to fit all." Hopefully, they find out about the different types BEFORE they are operated on. And it's a blessing just to be able to have surgery.
Actually, we have learned more about Esophageal Cancer SINCE our initial MIE, than we knew BEFORE. In the beginning, you are caught up in such a whirlwind of tests, treatments, questions, doubts, fears, anxiety, etc., that unless you have some guidance by some "senior survivors" as in "been-there-done-that", one might easily conclude that one is just as good as another. Now you'll be able to enlighten others along the way. You are doing really well, and your recuperation is right in line with what MIE post-op patients can expect.
All the best,
Loretta
P.S
Incidentally, there is a way you can "correct, insert, or delete" any parts of the letter you wrote yesterday. For instance, if you wanted to "change" the line underneath your name to read "Ivor Lewis Minimally Invasive Esophagectomy", or MIE, look for the word "EDIT". It will be either at the bottom of your letter on the right side of the page, or "up top" on the left side. On the bottom, it will say, "Edit, reply, flag this." Simply click on your post, and up will come your letter in a mode that only you can change. Simply "delete" the words you don't want, and type in anything you wish to add. Then when you hit "SUBMIT", your edited version will appear. The only thing that usually changes is the "date and time" depending on when you make a change.
And if you want to send a private message to anyone, when you click on their name up will come their "about me" page, and you can send a private message if that person has elected to receive private messages. Sometimes there are simply things you would rather really keep "private."
And if you don't put a separate heading in thelong block above your post, part of the first line of your letter will appear there.
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