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A Difficult Question

callerid
Posts: 99
Joined: Dec 2012

When we first learned of my husband's diagnosis of Stage 4 and his prognosis, it was as if time stopped. I immediately began research and found the stories on this forum both encouraging and heartbreaking as well as a little bit frightening. When I hear of how much suffering people with EC have gone through, I can't help but look ahead. After 2 months (which was the low end of prognosis) he still appears healthy.

Many caretakers have noted that their spouse/mate/relative had no other health issues and appeared healthy when diagnosed. My question is; can you tell me about the progression of the disease that you experienced?  

 

 

 

Cokecola kidd
Posts: 1
Joined: Feb 2013

mine went fast, i wish i would had months, i was diagnosed augest 27 2012 by end sept my tumo  had grown to where they could not run a scope down my esophagus any more to check its size, i started chemo weekly on oct 3 and radiation daily same day, for 6.5 weeks they opperated on jan 4 2013 and remover most my stomac and most my esophagus i am now battling a weight loss of over 100 lbs and trying to eat, i sleep in an upright possistion to hinder acid reflux, there are some good  days but mostly bad ones at this point,

 

bingbing2009
Posts: 179
Joined: Feb 2011

Hang in there. You are still relatively early post-op. I felt terrible for quite some time after my surgery. I literally threw up everything I ate, suffered horrible reflux when I tried to sleep despite being elevated, and had no energy or strength. I lost about 70 pounds. My husband thought I would be an invalid for the rest of my life. I really was in bad shape.

You should see me now, though. I'm a teacher and went back to work in August of 2010 after my surgery in February of 2010. I have only missed one day of work and that is due to having an MRI on my shoulder. It really does get better, so hang tough.

 

Melinda

dx Oct. 2009

Nov. and Dec. 2009--chemo and radiation (cisplatin and 5-FU)

Feb. 2010 Ivor Lewis Surgery

Altra's picture
Altra
Posts: 27
Joined: Apr 2011

I wouldn't have known anything was wrong with my dad at all until he started chemo and radiation- which really threw him for a lope. After the brief pause in chemo before his surgery, my dad was back to his old self- hiking, canoeing, doing projects around the house...The surgery really, really set him back, and he never truly recovered from it. He was stage III when diagnosed, and at the time, going through chemo/surgery was the most practical option. But seeing his decline after the surgery really makes me wonder if we made the best decision.

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

My husband was diagnosed as Stage IV in June 2011.  He was on a chemo break from June 2012 until Jan 2013 after a progression.  He is now back on Taxol which worked well and was well tolerated before. I think many of us don't even want to hear any projected time ranges.  Doctors are not God , regardless of what some of them may think.  And everyone is a statistic of one.  There are some Stage IVs that are living full lives 6-8 years out. As for your question, EC can and does progress in different ways for different people.  Some, including us, think that the best quality of life for the longest period of time is a good goal for Stage IVs.  This disease sure makes you realize that each day is precious.

FlorenceNightin...
Posts: 9
Joined: Oct 2012

Dear Altra –

 

Your letter touched me.  I sense a lot of regrets and looking back which Dad would not want.  Hope this season of grief will soon be mellowed with more memories of happy times he spent with you.  Yes I know it hurts, but better times will come. Rest assured Dad made all the right decisions.  Remember him for all he did to preserve life so he could spend more time with you and the rest of his family. 

Wrote you a separate letter here - http://csn.cancer.org/node/254526.

 

Praying for you especially on March 13th

“Flo”

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

Your Nick (dad) and my Nick (husband) - so similar in so many things!  I know you miss him.  I understand that so much that it huts.  I remember you when you were posting here and going through the treatment / surgery times.  I recall "talking" with you then.

Don't 2nd guess yourself or your dad.  He did what was right for him, what was right for a chance to beat this beast.  Doing anything less would have been not your Dad or not my Nickel.  You know this type of guy - he will meet the world head on and do his damnedest to make it march to his tune!  And bless them - they tried hard, very hard :)

Hugs to you!  I share your sorrow and sadness.

 

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

paul61's picture
paul61
Posts: 1111
Joined: Apr 2010

When we hear “Stage IV” we frequently expect the worst. Unfortunately, Stage IV Esophageal Cancer is a grim diagnosis. But there are people who survive, some for a substantial period of time. Jane Picket is the longest term Esophageal Cancer survivor I am aware of, who has not had the benefit of surgery. I know this is an "exceptional case" and certainly not a “typical case” but hope is like love, it is free, and there is never too much.

I am sure Jane would not mind if I duplicated her post of the first of this month.

 

Subject:

http://listserv.acor.org/archives/images/b-blank.gif

39 years of survival

From:

http://listserv.acor.org/archives/images/b-blank.gif

Jane Pickett <YazooPic@AOL.COM>

Reply-To:

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Esophageal Cancers Discussion List <EC-GROUP@LISTSERV.ACOR.ORG>

Date:

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Fri, 1 Feb 2013 01:05:27 -0500

I just wanted to share this milestone with all of you,  particularly the

newly diagnosed EC patients and their caregivers. 39  years ago this month, I

began this journey with EC.  I was only 34 at the  time and had never heard

of esophageal cancer, I didn't even know the type of  doctor I should see. 

I first went to two ENT's only to be told my  swallowing problems were due

to nerves.  After two years of suffering from  what I thought was indigestion

and problems with swallowing, I found an  internest who immediately put me

in the hospital and ran some test.  It was  a whirlwind of being examined by

different doctors, surgery to do biopsies  (three) at two different

hospitals.  The first two were done in Miami  because the surgeon wasn't satisfied

that the results of the first biopsy were  correct, the second showed

squamous cell carcinoma of the esophagus.  A few  days later we were flown to ST

Louis for a second opinion and another biopsy to  determine if I could be a

candidate for surgery.  This proved not to be the  solution for me.  My

cancer was inoperable, it began at the top of the  esophagus and was quite large

and had broken thru the wall of the  esophagus.  My husband and I were told

to get our affairs in order,  that I only had two weeks to six months to

live.  The doctor was not sure  that anyone would accept me for radiation

treatment, but because we knew of a  doctor in Gainesville, Fl who had trained

under this doctor, he made the  arrangements for me to be seen.  I lived in

Gainesville with friends and  was experimentally treated with radiation.  This

was in 1974.  Many  improvements have been made since then in the treatment

of EC.  I probably  would still not be a candidate for surgery due to the

location, but for some  unexplained reason I have survived this terrible

cancer and am doing very  well.  I have met many of you personally over the

years and treasure the  memories.  I have been saddened by the loss of quite a

few of my EC  friends, Dennis, Ray, Jim  and now George and others, but I

have also been  encouraged by the long term survival of many others that I have

met, Micky,  Steve, Colin, John, Colleen, Sissy ,

David and Eric and so many others that  serve as inspiration to the newly

diagnosed, that there can be survival.   Who would have thought I would be

here writing to you 39 years later.  I  pray that you will all join the ranks

of the above mentioned, they are an  incredible bunch.

 

Jane Picket

 

 May your husband have a long survivorship as a Stage IV.

 

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 

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