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Post Escophagectomy Testing/Surveillance

David2013
Posts: 3
Joined: Feb 2014

Thank you all who post on this forum.  Very valuable information is provided.  This is my first posting.

I was diagnosed with EC (Stage 3) in January 2013.  I had my esophagectomy (MIE) in May 2013 with major complications.  Because of the compliacations, I subsequently had to have a colonic interposition (a portion of my colon was used to replace the removed esophagus) in December 2013.  My recovery is going well so far.  I had complete pathologic response from the chemoradiation prior to the colonic interposition and remain cancer free or No Evidence of Disease (NED).

My question to those interested is what follow-up testing are people experiencing in terms of regularly scheduled exams or scans.  I was originally informed that I would have CT and/or PET scans quarterly (every 3 months) for the first 2 years, then every 6 months or yearly for years 2 to 5.  I was recently told however that my follow up visits will consist of a clinical exam only, and that scans and lab tests will be dictated by any clinical findings during these visits or symptoms that I might report to my oncologist in between visits.  It appears to me from postings on this forum that most folks are having regularly scheduled CT and/or PET scans, not just clinical exams.  This concerns me because I didn't experience symptoms from EC until it became a serious issue and diagnosed as Stage 3.  It seems that regularly scheduled scans would be prudent for early detection of recurrence.  I would appreciate reponse from others describing what type of post esophagectomy testing/surveillance they undergoing or what has been recommended by their doctors.

I'm inclined to disagree with my oncologist and request regularly scheduled scans instead of just  clinical exams (a doctors visit).  However, reputable sources do recommend clinic visits only  with imaging tests "as needed" (from the National Comprehensive Cancer Network [NCCN]).  "As needed" was not descibed so I'm not sure what that means. Perhaps because of my NED status, that is why my oncologist is recommending only clinic visits.  ANY THOUGHTS?

Thank you in advance for your responses.

Sally.L
Posts: 38
Joined: May 2012

Hi David,

My husband was diagnosed stage 3 in May 2012.  He had an MIE August of 2012.  He was cancer free after the chemo and radiation.   The cancer center he had been going to told him basically the same thing you were told.  No further scans unless something suspicious was detected.   His oncologist explained their reasoning was that the scan itself poses certain health risks so they feel it’s in the patients best interest not to do them unless something gives them reason.

For financial (and other) reasons, my husband decided to continue his follow up care with a different hospital beginning in January of 2013.  He goes every three month, but he only gets a scan every 6 months.  He seems to like this schedule and feels he’d rather take his chances with the scan risk rather then waiting for something suspicious to show up.  So far he is doing great.

 

Wishing you many years of cancer-free health.    Sally

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

David,

It has been four years since I had my Ivor Lewis esophagectomy. For the first two years I had a physical exam with blood work and CT scan every six months and endoscopy every year. In year three and four I had physical exam with blood work every six months, and CT scan and endoscopy every year.

I would say my follow up surveillance is typical of most esophageal cancer survivors. I think insurance companies tend to challenge the need for scans after year one in the absence of any symptoms of concern. So that may be the basis of your oncologist’s perspective on follow up. But no scans in the first three years is certainly not typical.

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 - Four Year Survivor

David2013
Posts: 3
Joined: Feb 2014

Paul,

I saw a reply that you submitted in reponse to a posting back in May 2013.  You mentioned in your response that "My second year I started to notice the pain and numbness in my right chest area and back started to improve . . ."  I too have pain and numbness in my right chest and back related to my initial surgeries in May 2013 and not related to the colonic interposition in December 2013.  The pain/numbness has been chronic since May 2013.  I wanted to find out from you 1) what the source was for your pain (obviously from the surgery but anything specifically), and 2) did you have any treatment for the pain (i.e., medication or other). 

A little background.  My situation is probably different than yours in that because of the complications I encountered during my initial MIE, my subsequent surgery resulted in my haveing many incisions including a large incision in my back (if you want to know why I can respond).  As a result, my pain and numbnes has been clearly diagnosed as nerve damage pain and I was told this could last a year or more.  I'm sorry to hear that your pain/numbness lasted 2 years, but seems it did eventually go away (or did it?).  

I can tell you that my pain/numbness is not terribly bad, about a 3 to 4 (without medication) on the 0-10 pain scale, but it is chronic (since May) and very bothersome.  As a result, I've continued to use oxycodone, but I've recently been prescribed medication specifically for nerve pain as an initial treatment.  The pain specialists that I saw described several other treatment options for chronic nerve pain including invasive treatments that I want to stay away from since my pain is not terribly bad.  How was your pain managed?

Thank you in advance.  If you want to reply more privately, please use my email address at dlamadrid1007@gmail.com

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

David,

I am happy to report that the numbness and pain in my right chest and back area continues to improve with time.

I think I also had pain related to nerve damage because while I was in the hospital after surgery I contracted an infection in my surgical incisions. As a result, they had to be re-opened to treat the infection. The large incision in my back took almost six months to heal after I was discharged from the hospital.

Initially I would say my pain was about a 4 or 5 on a scale of 1-10 and was almost constant. After about a year it became an issue only after doing some repetitious activity like walking a long distance, or raking the lawn, of lifting something heavy. After about two years that also improved.

I am now four years out from surgery and I still have pain when I do something like wax the car, or play 18 holes of golf, or rake the lawn, but now the pain is more like a dull ache on about a scale of 2 or 3 and it goes away after I rest for a bit.

The only other thing that causes me an issue is that I am always sore when first getting out of bed in the morning and I can forecast the weather because cold damp weather also causes a low grade ache. But I am also 66 years old so lots of aches and pains anyway.

In terms of pain management I took Tylenol for a while on a regular basis and still do if the weather is cold or I have been doing something strenuous. Most of the time I just put up with it; part of the price for still being alive after cancer.

But things do get better with time.

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 - Four Year Survivor

dfd24
Posts: 79
Joined: Mar 2011

hello,

my husband's recurrence was found by a ct scan .he had no symptoms. except for the first time when it was 3 months after the operation he was having scans every six months . his recurrence occurred 18 months after the operation. . 

I myself would favor scans to catch things early. 

wish you all the best,

danièle

JKGulliver
Posts: 81
Joined: Apr 2013

My husband was diagnosed with Stage 2 EC in April, 2013.  He went on a clinical trial.  The trial is very prescriptive regarding follow up  care.  It calls for CT scan every three months with blood work, for two years.  Every six months afterwards for five years.  

Bloodwork will not diagnose a reoccurance of EC.  It is mostly a report card on the quality of your remission state.  Neither is a CT scan diagnostic.  The cancer has to be advanced enough to be picked up on CT.  However, both are better than nothing.  This change of procedure by your doctor may well be related to insurance.  I would contact your insurance company if you want CT every three months for two years.  You have to be relentless.

Our medical industry does not practice anything preventative for metastisized cancer.  It waits until it occures, then treats it. The industry also does not operate for early detection.  People who are diagnosed in Stage 1 and 2 mostly found the cancer by luck.  Many people complain about symptoms for some time before Stage 3 or 4 is finally diagnosed.  This is what I think.

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Hello David,

My husband is almost two years post Ivor Lewis op for stage 3 ardenocarcinoma.

His op was done a four and a half hour drive from our uk home and his only exams

have been clinical since his op. We too questioned the lack of scans and got the same

B*** S*** that a lot of people get. Scans are damaging etc. 

We think that the lack of scans is a financial decision on the part of the hospital,  coupled

with the fact that even if mets were discovered, they would not operate again anyway.

In our opinion, early detection would at least provide some help when having chemo or

radio theraphy, if mets were discovered. We are going to try changing hospitals now to

see if we can get a scan done.

Having said all this, he remains quite well, with no obvious signs of a return except that

he tires easily. That said, he always did fall asleep when he sat down, even before the 

cancer,

Love and hope for all the people still fighting to slay this horrible beast. Keep well. 

Prayers and hugs,

Marci x

 

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