New here sharing my story Adenocarcinoma of Esophagus

Mogley98

Hello all,

 

FIRST A PSA ANYONE with a diagnosis of ESOPHAGEAL cancer check on SS disability this cnacer qualifies as a compassionate allownace and can be approved in a couple weeks.

 

I was getting an annual chest Xray as a precaution for being an ex smoker when they found an enlarged lymph node. It took months due to Covid to actually get in to finally have an endoscopy which confirmed a esophageal cancer diagnosis.

I was Stage IIIB, I had no difficulty eating at that time and wasn't suffering any symptoms other then the GERD I have had for years.

I started Chemo and Radiation, I was not at the time a candidate for surgery the cancer had spread to local lymph nodes. I had a bad reaction to the Taxol but they added more Steroid and expanded the time to infuse the chemo and I tolerated that for a few weeks.

The radiation of course was easy at first, I drove myself had no issues but by week 4 I couldn't continue on my own, towards the end of the radiation my esophagus closed up and I lost 20 pounds no feeding tube due to not wanting to damage the stomach.

About a month to a month and a half after Chemo and radiation I started feeling much better, Pet scan showed cancer still in esophagus but lymph nodes looked clear. I was now a candidate for surgery but really hesitant about the surgery I hated the idea of going backwards and was deciding if I should live at 100 MPH for whatever I had left or go with the surgery. I was told 1 out o 3 have complications and all the life changes afterwards to still most likely die from cancer reoccuring.

Anyway I decided to go forward, I woke up in ICU after 8 hours of esophagectomy and neck disectomy for lymph node harvest. 5 days in ICU then straight home with 24/7 feeding tube. Gastric distress is the term I'll use for how difficult my stomach was at first.

I walked when I got home every day I could with a cane at first but eventually after a few weeks got up to a mile a day in less then thirty minutes.

I dont have a great appetite in the am so I find it very hard to eat, I've used an appetite enhancer to try to increase my desire to eat.

I've managed to maintain my weight since discharge, the feeding tube was awul to deal with, the Dr said getting it off depended on my not losing weight so I loaded my p ockets and wore my heaviest stuff along with ankle weights but I got that tube off!

Now a month after surgery I'm just weak not up to my old self yet, I hear it takes more time, I'm 62 and was working fine up to diagnosis. I look forward to less gastric distress and stronger days but God has been good to me.

 

 

 

 

paul61

It looks like you are making good progress

Hi Mogley,

I was 61 when I had my Ivor Lewis surgery. Your progress sounds similar to mine. It was almost a year before I felt like my post diagnosis self and started to gain the weight back that I had lost. It does take time. I retired early so I did not have to go back to work. I found just taking one day at a time was the best approach. I am now 11 years out from surgery. Happy to be here!!!

Best Regards,

Paul

 

marydee2021

paul61 said:

It looks like you are making good progress

Hi Mogley,

I was 61 when I had my Ivor Lewis surgery. Your progress sounds similar to mine. It was almost a year before I felt like my post diagnosis self and started to gain the weight back that I had lost. It does take time. I retired early so I did not have to go back to work. I found just taking one day at a time was the best approach. I am now 11 years out from surgery. Happy to be here!!!

Best Regards,

Paul

 

I was recently diagnosed with

I was recently diagnosed with this type cancer too. Have 1st meeting with a Radiation Onocologist and a Thorasic Surgeon next week. One thing I'm learning is nothing happens fast when it comes to tests and Dr Appts here. 

Scott334

New diagnosis also

I'm just in the middle of the testing and consultation process.  Biopsies showed adenocarcinoma.  Have a PET in two days.  CT showed spread to stomach, intestines, liver, lymph nodes.  I feel fine.  The only symptom that brought me in was a slight problem swallowing, nothing serious.  I have the special problem that my wife is stage 6 alzheimer's.  She needs 24/7 care, though she is still fully aware of what is going on around her, she is ambulatory and otherwise healthy.  We have three grown children, one close by, the others a few hours away and they are supportive but the reality is they have families, careers, lives, etc.  I worry if I'll be able to deal with my wife's needs.  I've always sworn that I'll never institutionalize her and still hold to that.  I contacted an in-home care company in the area and need to follow through on that.  We certainly are not wealthy, just get by comfortably on SS and pensions and a small nest egg.  So, the future has taken this unexpected turn.  I'm 68, healthy, weigh same as in HS, never smoked, saw DR. on regular basis... now this.  Anyway, I'll be checking in for info and advice.