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I am a new Member 47 Yr Old Woman-6 Mos Post MIE

ShellyMac
Posts: 18
Joined: Jun 2012

Hello All.

I joined earlier this month and have been following many of your journeys and I can't even begin to express how grateful I am to have all of you "out there" so very willing to share both your own personal stories as well as your knowledge.

I am a 47 year old woman (I was diagnosed at 46) who has never smoked and up until 9/29/11 was in excellent health. After experiencing some trouble swallowing and odd sensations in my upper back I was diagnosed with Squamous Type EC of the upper esophagus. An endoscopic ultrasound showed that the tumor had just barely penetrated the esophagus and a few lymph nodes looked compromised. I was comforted when told that at that stage it was operable and curable. I underwent five weeks of daily radiation and chemo one a week. On 1/10/12 I had Minimally Invasive Esophagectomy performed at Brigham & Women's Hospital in Boston by Dr. Raphael Bueno M.D.. I was hospitalized for 14 days. Now, almost six months post surgery, I am able to take 3-6 mile brisk walks with my dog and am starting to feel like myself again. Most days I feel great. Others, I can't get out of my own way.

I have two questions: 1) do any of you have issues with a cough? It has gotten better as time has passed but still exists
2) do you have bouts of hypoglycemia? My 17 year old son is a type one diabetic so when I feel poorly I actually test with his tester and I have been as low as 46. This can be quickly remedied with a glass of juice but it creeps up on me at times. I have been mindful of protein intake and do not eat many simple carbs(since my son is a diabetic I got a quick education on nutrition when he was diagnosed).

Lastly, since my surgery, I have had 7 esophageal dilations. My esophagus begins to close up. For the first four I had to travel back to Boston so that my surgeon could perform them (I live in NH) now I have them done at my local hospital which is much more convenient.

I know this very lengthy and I apologize but I truly would appreciate any advice or input. Thank you and God Bless!

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hi Shelly

And welcome to our family. As you've already noticed, the pioneers here are extremely helpful - I was also blessed to find this site when my husband was diagnosed 11/21/11. I knew the right questions to ask and things to look for in order to head them off quickly.

Don had his THE surgery in March this year, so he is not as far out as you are, but recently he has started that darned coughing almost immediately after eating. I am going to suggest to him to call the surgeon and see if it is possible that he needs a dilation - he doesn't indicate that anything is getting stuck so I'm not sure if coughing is a sign that a dilation is needed.

I am concerned about the coughing - it was pretty bad right after surgery then kind of went away and now it's back. It frustrates him, but concerns me.

Maybe some of pioneers know the answers for us. Again, welcome and like they told me "sorry you had to find us, but so glad you did". We get through this battle with the help of each other.

Hugs,
Judy

ShellyMac
Posts: 18
Joined: Jun 2012

Thank you for your reply Judy. I can tell you that my coughing was really bad shortly after the surgery, seemed to subside somewhat but not completely. I had my first dilation a month and 1/2 after the surgery. It seemed worse initially but then seemed to get better. As I said in my initial post, the coughing is now nowhere as bad as it was six months ago but it comes and goes. I have been told that it is part of the healing process after MIEs but not many on this site allude to coughing issues.

My surgeon thought dilations would help the cough and I suppose over time they have(along with the much needed stretch to my esophagus). Drinking and eating can bring on the cough some of the time but not all. Hard to figure this all out!

I wish you and Don the best and please convey to him that it has been just within the last two months that I have really begun to feel strong so he can have that to look forward to. Please keep me posted as to his coughing issue. I hope it subsides for his sake. I know how terrible it can be.

Hugs back to you,

Shelly

BMGky
Posts: 666
Joined: May 2010

It is good you were eligible for surgery. I am sorry that I don't have any answers to your questions as I don't have such information. I just wanted to post to let you know we are concerned and are wishing you the very best. BMGky

ShellyMac
Posts: 18
Joined: Jun 2012

Thank you BMGky for your kind and comforting words......I appreciate your warm wishes.

Shelly

ShellyMac
Posts: 18
Joined: Jun 2012

Thank you BMGky for your kind and comforting words......I appreciate your warm wishes.

Shelly

flmo's picture
flmo
Posts: 72
Joined: Jan 2011

Mu husband had a MIE with Dr. Luketich at UPMC 16 months ago. He had a cough for about a year after surgery. It was a dry cough usually brought on by talking. The cough has just about disappeared,so maybe it just takes time. He had one dilation 3 months after surgery which didn't seem to do anything for the cough.

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

I had the THE in January and like everyone else I had coughing initially after surgery but it seemed to go away pretty quickly. I haven't had any recurrent problems with coughing or with the esophagus closing up. There have been no problems with that at all. My surgeon, Mike Mulligan at the University of Washington, says that he has never had a patient need dilation after a THE. I know that's quite a claim but from my experience accurate. If You are coughing and its getting worse I would have it checked out.

It is great to hear how active you are and how overall well you are feeling. Keep up the good work!

Dave

tmcjay's picture
tmcjay
Posts: 40
Joined: Jun 2012

Hello Shellymac

It will be a year Aug 5th since I had the surgery and I still have a cough. Strangely it mostly happens when I eat, but not when I eat everything. I have mentioned it to my doctors in the past and they didn't seem concerned but it is annoying and sometimes embarrassing. I am going to mention it again at my next appointment , will let you know what they say. It sounds like you are recoverying very well from your surgery 6 months ago. I can tell you that I was'nt anywhere close to walking 3 to 6 miles a day post op 6 months, but then I didn't walk 3 to 6 miles a day before surgery either so maybe that's why. lol Continued success on your recovery.

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Hi Shelly.
The bouts of hypoglycemia are likely related to dumping syndrome. My husband has had some trouble with dumping syndrome, and in the late phase of dumping you can often experience hypoglycemia. That happens because as the food is suddenly released into the small intestine, the pancreas is alerted to the sudden potential rise in blood sugar and it releases insulin and you also have other hormones that are released like cortisol and adrenaline. So when you do have the hypoglycemia do you also have stomach cramps or any other signs of dumping ? That would be my first suspicion as to why this is occurring. If you make some alterations - small frequent meals and try to prevent the dumping, you'll prevent the hypoglycemia.

Cora

Cora11's picture
Cora11
Posts: 177
Joined: Sep 2011

Also, the cough is common and is likely related to reflux. Are you sleeping with the head of your bed elevated? It's also good to not eat 2-3 hours before going to sleep ? Are you on a proton pump inhibitor like Prilosec ? All of the above might help. Also, a cough can occur prior to needing an esophageal stretch- sometimes secretions can get hooked up where the anastomosis is and cause you to cough.

All my best,
Cora

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

I wonder if using a humidifier would help. Mom had a horrible cough and nothing seemed to help. She did not, however, have any surgery. Sadly she was never a surgery candidate from the get go. They gave her breathing treatments with a nebulizer and that helped. They also suctioned her. She really hated the cough. I think it was more radiation-related than anything else, but I don't really know.

ryckej1's picture
ryckej1
Posts: 29
Joined: Jun 2012

Hi ShellyMac

I had my esophagus removed 10 months ago after chemo and radiation. My story is very similar to yours. Physically, I am doing well. I am able to run and do all of the things that I was able to do before. The cough has been THE most annoying thing for me post-surgery. It only really happens when I go to bed. About 15 minutes after I lay down, it starts. Sometimes it is so strong, if feels like my ribs are sore!! It is sometimes accompanied by reflux, but other times just a weird tickle in my throat. My bed is propped up, and I use wedge pillows, and that helps a bit, but not completely. The coughing does stop as soon as I sit or stand up. I am seriously considering sleeping in my recliner, or looking into purchasing and adjustable frame bed. Others do not appear to have as much trouble with this, so I am still hopeful that it gets better.
I also have trouble with the hypoglycemia. I have been trying to eat better, but have a long way to go. I have only had one dilation since my surgery, and that did not do much for me. I don’t have too much trouble getting food down as long as I take small bites and chew properly. I usually only have trouble when I am in a hurry.
It sounds like you are well on your way to recovery and are doing all of the right things.
Jeremie

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