A Difficult Question

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.

Altra said:

I wouldn't have known

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.

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.

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.

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