Stage III and my update after surgery


Diagnosed in May 2012,  T3N1MO,  Was treated at MD Anderson in Houston.  I did 5 1/2 weeks of combined Chemo and Proton Radiation (5 days a week) and completed that Sept 13th, 2012.  Chemo was Xeloda (5FU in Pill Form) twice daily and Docitaxol once a week on Mondays.  I waited until Nov 14th before I went through a modified Ivan Lewis Procedure.  I had been married for about 20 years with 3 grown kid, divorced her for about 7 years and when she was diagnosed with Ovarian Cancer and I was Diagnosed with EC cancer we decided we needed each other and decided to remarry.  I delayed the surgery,  we were remarried on Oct 27th with our kids being our groomsmen and bridesmaid and our 3 grandkids being the ring bearers.  We flew off to Vegas and drove to the Grand Canyon for a week and came back for my surgery.  We both had the Grand Canyon on our bucket list and I'm so glad we did the trip before my surgery.

Surgery was Nov 14th.  They had me up and walking that night after my surgery that day.  It was a chore with the Gastro Nasal Tube, 2 Chest Tubes, J-Tube, catheter, and IV's all in me but the Nurses were great.  After a few days the Nasal Tube was driving me crazy and caused me the most discomfort.  They finally removed it after 5 days and me promising not to swallow anythiing.  I'd swish water around in my mouth and use a suction tube like a dentist to make sure I didn't swallow.  I walked around the hospital floor about 6 times a day.  I was released after 8 days and did the formula feedings through the J-tube for 2 weeks and nothing allowed by mouth including liquids. 

On Nov29th I had the Barium Swallow Leak test which I passed. My first meal after passing the test was Chik Filet Nuggets and it was soooooo great to actually eat something again.  We also purchased an inflatable wedge for the bed that is automatic and works great.  I still have my J tube in and use it for water flushes to stay hydrated.  I go back to the Dr Jan 3rd and  If I can maintain my weight and not take anything through the J tube they may actually remove it on the 3rd.  I struggle at times to keep my weight constant though.  I was 260+ pounds when I started this and I struggle to stay at 230 now with supplementing with the J tube. If I eat more than small amounts I tend to throw up a small amount and I can always tell because I have this feeling in my throat.

I have had about 3 bouts with severe acid reflux while sleeping that makes me wish I had never done the surgery.  It wakes me up,  I chew a handful of Tums and swish water to try and stop the burning.  It usually lasts for about an hour. I'm still on a learning curve and I think if I don't eat or drink anything at least 2-3 hours before going to bed it helps.  I was always a side sleeper until my surgery and now it has only been on my back with the inflated wedge but for the last 2 nights I have been able to lay on my side again and not have a problem with reflux.

I have gone through some "Woe is Me" times and not being back to 100 percent yet questioned having the esophogectomy since they told me the Combined Chemo and Radiation had gotten the Cancer.  But then I read others on here that have gone through so much more than I have and I then feel guilty for feeling depressed at all.  I am Cancer Free and a survivor.  The inconviences that I experience are nothing compared to what it could be like.Laughing




  • Amjosmom
    Amjosmom Member Posts: 212
    Excellent outlook
    That's wonderful news that you are cancer free!! It may be depressing to not be 100%, but the bright side is you at least have the chance to get there! My Dad is Stage IV and wasn't given the opportunity to be cancer free. Every day is a struggle to just be alive. You are so blessed to recognize the great gift you have been given! Enjoy every moment and don't let yourself get down!! You have so much to live for!! Make the most of it and share your stories so the rest of us can be happy, too.

    Best wishes for a GREAT many years to come!!
  • o2bnsf
    o2bnsf Member Posts: 19
    Stage III surgery

    Thank you for sharing the details of your journey. My husband was diagnosed in sept 2012 with ec t3n1mo. He treated at the university of Penn in Philadelphia for the Proton Therapy.  The chemo was a problem as he was to be on a 24/7 5fu pump for 28 days but after 10 days he became toxic and all chemo stopped. He was in the hospital for 10 days in Nov but we continued with Proton 

    which ended Dec 3.

    his pet scan was New Years Eve and we received good news today, the cancer has not spread and we will move forward with surgery within the next two weeks.


  • paul61
    paul61 Member Posts: 1,391 Member
    Glad things are going well

    It is great to hear that things are going well. Sounds like things are proceeding very normally. I had Ivor Lewis surgery in 2009 and it took about a year till I was back to "normal". Things get much better the second year. I am sure you will be happy to get rid of the feeding tube I know I was happy when they took mine out. I have found that if I eat an apple about 2 hours after I eat my evening meal and about three hours prior to going to bed I very seldom have acid reflux at night. 

     Best of luck in a rapid and full recovery.

     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

     Three Year Survivor


  • jim2011
    jim2011 Member Posts: 115
    side sleeper

    I was also a side sleeper and now after 19 months post surgery I am sleeping on a wedge and very happy about that. I still get acid reflux and I am going to try the apple as Paul mentioned. Good luck to you and yours!!

  • sandy1943
    sandy1943 Member Posts: 824
    Welcome, I am a stage 111

    Welcome, I am a stage 111 five year survivor. Things will get better, but there will be permanent life changes. I take omeprozole in the morning and a zantac 150 before going to bed.I try not to eat anything within three hours of going to bed. If I do this and don't roll off my wedge, I can controll the reflux, but I do have my tums handy beside my bed just in case.

    Congradulations on the two of you remarrying. sometimes bad things happen to make us realize what is really important. I pray for each of you to keep good health in the future


  • kaimai
    kaimai Member Posts: 3
    Side sleeper

    Hi, I had the Ivor Lewis surgery 2 years ago. I am a side sleeper too but what I did was raise the head of my bed with a couple of wooden blocks and I sleep really well, comfortable and no reflux at all.

  • TinasVoice
    TinasVoice Member Posts: 8

    I originally posted to this discussion board in May of 2012, right before my surgery. I received alot of good info, but the surgery was done. I had an esophagectomy and laryngectomy. I lost my ability to talk, but am now cancer free as of CT and Pet scans done last week. It took a whole year to get to this point, but am grateful for all the doctors that helped me get here. It took two surgeries, the first one did not get all the cancer. The second one left me with scars to cover up first stoma. Stoma had to be moved lower to cut away more trachea. Also my left pectoral muscle was cut to help with covering first stoma. So I am in physical therapy to help regain strength and movement in left arm. I am able to eat almost everything in moderation. I still struggle at times with eating to big of a meal or snack. I also am still working on gaining my strengh back. I just finished follow-up chemo treatments after surgery in November. It is good to talk to other people that have gone through so much, like me. I will continue to post, still learning how to communicate better....Tina Smile