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capergal56
Posts: 11
Joined: Aug 2013

Hello everyone, i posted on Oct. 8th about new developments in my  ongoing fight with the after effects of " esophagectemy" . I thought i was well on the road to being cancer free. three and a half yrs  and was doing great. Now i'm having problems..the posting i had on about my neck was minor compared to this.

I don't show it to others ..but i'm starting to feel really afraid of what the tests will show and i feel the changes in my body..subtle changes ..but they are there. I'm seeing my doctor today about the results of bloodwork i had done..which i had requested since i hadn't had a full blood work up since May of 2011.

After reading all the postings on here i came to the realization i wasn't being as well cared for as i should have been. I had my surgery in a small local hospital and the surgeon had a very good reputation, but i was shell shocked and didn't ask a lot of questions. it was a miracle i survived I found out recently there had only been a few of these surgeries done before me. Before that they were sent to a major city 5 hrs away. Rumour has it i was the first one to survive in my local hospital.

The surgeon who performed the operation has moved and my surgeon now has given me more info than i needed to know...apparentely when he operated ..the way he connected the point at the junction is to put it bluntly weird. my doctor asked if i was losing weight or had food coming back up. I do sometimes. If this happens on a reg basis they would have to operate again  and this surgeon now said he wouldn't touch it. I'm so stressed about this ..along with the MRi looking for tumors in my brain..i just can' think straight.

Sorry for the long rambling letter..thanks for being there

paul61's picture
paul61
Posts: 1105
Joined: Apr 2010

For those of us who have had an esophagectomy, surviving the operation, unfortunately is just the first step in the journey. Then there is learning how to eat with our new digestive system, the difficulties with digestion, and occasional “after meal” surprises that have to deal with. But probably the most difficult thing to learn to live with is the constant concern about “recurrence”. When most people have a new pain or strange sensation or change in their body appearance they just assume it will pass or can otherwise be dealt with at the doctor’s office if it doesn’t pass in a few days. Those of us with a history of esophageal cancer always go to the “worst case” scenario. We have to learn to live with a constant state of uncertainty. It takes real courage to move forward in spite of the fear in the back of our mind. But I guess that is what survival is all about.

I think the value of having an oncologist that follows NCCN guidelines in terms of the recommended treatment follow up protocol for esophageal cancer patients is that we at least have the peace of mind of knowing regular surveillance exams and tests are completed to identify issues early in the process. It sounds like you are now under the care of a doctor who is following an appropriate protocol. Try not to stress too much over the tests. For those of us who are survivors, there will always be another test on the horizon. We just need to learn to view them as insurance that a regular look is being taken to insure our “strange feelings” are just the typical difficulties all people go through as survivors and not something dangerous.

If indeed there are some “mechanical” issues in how your surgery was completed; there are surgeons out there who specialize in minimally invasive repair in our area. Probably the best know is Dr. James Luketich http://findadoc.upmc.com/PhysicianBioQuery.aspx?EPCDID=439

I hope your tests come back with no significant findings of concern. Perhaps a visit to a major EC treatment center like UPMC could yield some answers to address some of the other issues you have been dealing with.

Wishing you the best,

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

 

capergal56
Posts: 11
Joined: Aug 2013

Thank you for your message Paul and the link you provided, but i live in eastern Canada and i'm afraid it wouldn't help me. I'm on here because the Canadian Cancer Society doesn't have an online support group for esophageal cancer survivors.

I do have some news from my blood work up and it does explain a lot of the symptoms i've been having, my B 12's are extremely low and i'm now getting shots and on supplements. My diet has also changed to include lot's of B 12. So hopefully i will be seeing some good results soon. I have my MRI on the 30th ..they are checking for tumors on the brain and right ear. I' m not so worried about that now.

Thank you very much for listening

Sharon

Sydney, Nova Scotia

Canada

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