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Not again I hope!

tcaba's picture
tcaba
Posts: 41
Joined: Nov 2012

I was diagnosed Sept 2010, went thru chemo and 35 hits of radiation with esophogetomy on Dec 21, 2010. Recovery was pretty uneventful and all my checkups have been good until three weeks ago when my gastro doc/EGD saw something and the biopsy results came back abnormal. Now I'm facing an endoscopic ultrasound and all the damn fear, worry and unknowns associated with it.

My oncologist has told numerous times that blood test are the best way to monitor this monster and mine have always come back negative...Still I worry that something was missed or did not show up.

I don't know if I am an oddity or what but I never really experienced the fear, anger, denial stages. I simply said OK, let's get this fixed. But now I
Find myself in those places, mainly the fear. Fear for my wife, my children, my friends but not really myself. I hope that if God has chosen this time for me then there has to be a reason for it all!

Let us all pray for each other that this hideous and disastrous disease does not win the battle but only serves to make each one of us and those we love that much stronger ;>}

In any event I'll know for sure after Wednsday.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Fear is a four letter word... don't let this consume you. You sound like a fighter, so just prepare for the worst and HOPE for the best! Tell us a little about you. Did your team offer you post surgery chemo? What was your Stage before your esophagectomy? I hope this isn't a recurrence for you! Please keep us updated. Lots of prayers for you and your family.

~Jayme

Dad Stage IV
DX 8/ 2010

tcaba's picture
tcaba
Posts: 41
Joined: Nov 2012

All my test and I mean, CAT, PET, MRI, EGD were very encouraging pre-surgery. My surgeon removed apps. 15 cm of esophagus, pulled my stomach up told me envy thing went great and released me 16 weeks later. I was staged at 2 as the cancer had not spread to any other organs or lymp nodes. It was mainly contained within the esophagus and had not progressed to even the outer layer. My surgeon made special effort to say we got it all.

I had an encounter with achalasia some 34 years ago and went thru the various treatments of that time including muscle relaxants, stretching, herbal witch doctor brews and finally my first thorocotomy. I was not yet 21 and had been married to the love of my life just 6 months earlier. The surgery wasn't bad...at that time they were still giving morphine shots so I was pretty oblivious to the pain, but i was hospitalized over the Christmas holidays so that was a bummer. I learned best I could in those pre-Internet days of the dangers of GERD and Barrets and lived life as usual with the exception of swallowing difficulties. Not only did I have achalasia but my entire esophagus was essentially a dead tube with no muscle action at all. When I got out of the hospital I was 6 feet tall and weighed 134 pounds.

Fast forward 34 years with several EGDs and checkups I'm not 235 pounds. I remember in June of 2010 feeling like I had the flu...low grade fever, muscle aches, tired, but then it would go away and I'd feel good for a week or two. But then again those symptoms would reappear. In August we went to the beach. The same year as the oil rig blew in the Gulf. Rates were wonderful, a whole week for less than $600! I felt fine, ate well and had a good time with the fam.

Then on Monday as if on que the stuff started again. I was becoming a little concerned so I schedule an EGD for Thursday September 26th. I remember awaking to the nurse saying cough, cough. As it turns out the scope had gotten down there and loosened up a bunch of the food I had eaten the week before along with the mucus and I had aspirated to the point that they had to be intubated. The EGD was called off to allow me to recover and the doctor to begin breathing again. On Friday they decided to try again this time under full sedation. It was a long weekend waiting on the biopsy results but I knew what the answer was going to be so maybe that had something to with my attitude of not being overly freaked. Wednesday was port day and Friday started the first 72 hours of chemo ending Sunday afternoon and home I went after 10 days. Plans were 3 day chemo every 2 weeks. Followed by 35 beams of radiation and then surgery. Post surg. Chem was a possibility depending on how things went. Turns out my body didn't like 72 hours of poison so they had to adjust but my oncologist was satisfied with the progress. Radiation overlapped two chemo sessions. No hair loss, some weakness and listlessness, a little depression and a fair amount of nausea which wasn't helped by any legal medication. Thanks to a few good friends and my family I made it through the first phase of treatment.

Let me divert a minute. The radiologist office did not code the treatments correctly which resulted in my insurance MVP Healthcare(Cigna) of Rochester, NY, my employers(Eastman Kodak) chosen one not paying one red cent of the bill !!!!!!! Fortunately for me the office wrote it off as there mistake but it was a pretty harrowing ordeal for a few days to the tune of $35,000. I didn't know this until after surgery sometime in February.

I meet the surgeon December 13th. I pushed for surgery before year end for the benefit of my wallet since I was at 100% coverage. On the 21st at 5AM they put me in that famous gown for all the world to see and off I went. Surgery was actually the scariest thing for me. The pain, the unknown, the risk, the IMAGINATION. But all went well and 10 days I was released. I was now 54 years old and a Survivor!

So here we are, 2 years post surgery, a 2 year/ 3 month survivor and this stupid crap, I'm afraid has crept back into my life. I hope I'll know Wednesday afternoon one way or other. I'm not ready to wait any longer lets get this train moving

I'm sorry to be so long winded but I think maybe it helps us all to just vent a little some times.

Tonight is my last night in Gatlinburg with my loving wife who has stood by my side through too much thick and thin and I want to publicly say...Rosey I love you with all my heart and I pray that we are able to come up here many more times.

Sally.L
Posts: 38
Joined: May 2012

Hoping you get only good news on Wednesday. My husband will have his first post surgery scan in a couple weeks. The waiting is the worst..

Sally

AngieD's picture
AngieD
Posts: 504
Joined: Sep 2011

I think fear and anger are perfectly normal responses to where you now are. Like you mentioned, once you know what you are dealing with and have a plan, it is somehow easier than living with a huge unknown.

What blood test does your doctor use to monitor your status? I'm curious because our MO just uses CT or PET to monitor my husband.

You and your family are in my thoughts and prayers. Hoping for good results for you Wed. Keep us posted.

Angie, wife of Larry, DX Stage IV EC June, 2011

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

First, I like your prayer. Secondly, I hope you get answers Wednesday; the waiting is a very hard part I have found. Third, I would like to know what blood test they are monitoring with you. They are doing CT's and Pet's on my husband.

You are right venting can be a good release! This is a good place for that :)

tcaba's picture
tcaba
Posts: 41
Joined: Nov 2012

CEA(carcinoembryonic antigen), is what my Oncologist watches. As of September 25th my level is 0.6, every test since February 2011 has been at or below 1.0 and trending downward to the 0.6 range. Normal ranging for a non-smoker, which I am, is less than 2.5 ng/ml.

There is some discussion that CEA is not a reliable indicator of EC and just as many discussions that it is a valid indicator for any gastro related cancers not specifically EC.

So I guess we'll see how good CEA markers are at following EC.

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Prayers and good vibes are aimed at you today!! Best wishes for good results.

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Praying for good results from your test. Be sure and let us know tomorow.
Sandra

tcaba's picture
tcaba
Posts: 41
Joined: Nov 2012

well, I just got home and the wait continues...a brief history....October 23rd my old swaller hole was 8mm. Doc stretched it to 12mm just to get the instrument in. Today they found it had again constricted and required dilation before the EUS instrument could be inserted. A large amount of scar tissue and some nodes were seen and biopsies were sent out, hopefully the results return by Friday and with good results!

He told my wife that I MUST consult with my surgeon about the large amount of scar tissue. That worries me almost as much because I do not know how this can be remedied. I certainly don't want another thoracotomy. That would be number 3 in 34 years...guess maybe they should put a good heavy duty zipper in there.

Anyway does anyone out there have any experience with scar tissue out there?

I'm thinking now why not go to Lowe's and buy some water hose...maybe the bright green or yellow stuff...can you imagine what the surgeon would say when he cut me open...What the h*** is that!!

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

We will have you in our prayers tomorrow.

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Wish the garden hose were a possibility. Sure would make the surgery, as well as eating post surgery easier. And the choice of designer colors! Wow :)

Please keep your spirits up - it makes a world of difference in how well you take the treatment. But you knew that already.

Prayers are with you for good results.

Terry
PROUD wife to Nick, age 49
lost battle to EC, June 19, 2012

tcaba's picture
tcaba
Posts: 41
Joined: Nov 2012

Well it took them a while for this report 7 days and I'm still in the dark as are my docs. They want to say NO cancer but cannot rule it out so I'll have a ct/pet next week and hope and Pray for a good ending. A this point any ending(maybe not ANY) is better than the last 5 weeks of bewilderment and worry. I seem to have an inordinate amount of scar tissue and lots of inflammation.

birdiequeen's picture
birdiequeen
Posts: 329
Joined: Mar 2011

I will add my hope and prayer for you too.

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