Philosophoenix~U can find survivors here - but B prepared-it's probably 1 of the toughest battles Da

LorettaMarshall
LorettaMarshall Member Posts: 662 Member
in Esophageal Cancer #1

I have chosen to make a new topic forum for "Philosophoenix" and to give my answer here. So her entry will be first and then my remarks. __________________________________________________________

"https://csn.cancer.org/comment/1582230#comment-1582230

Philosophoenix

I am a hopeful but terrified realist

Just found out this week that my beloved dad has stage 3 esophageal adenocarcinoma - awaiting PET/CAT scans to see where/how far it's spread. We see the specialist this Friday. Can't tell you what a huge relief it is to see survivors in here, despite being an utter realist and fully aware of the viciousness of this cancer, I have to admit I wept with joy at your stories. Dad is prepared for a fight (I am so very grateful for the Aussie health system!!), but it's going to be a big one - it's so comforting to know there's others out there who've come out victorious. Thank you all for sharing xxx"

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Dear Fellow Realist!

You’re a woman after my own heart.  Kiss Now as to all your questions about Stage III Esophageal Cancer.  I’ve progressed all the way from asking our gastroenterologist “How do you spell Esophageal” to sharing a success story now entering our 15th year of survival. 

Like your dad, my husband had Stage III Esophageal Cancer, (Adenocarcinoma at the Gastroesophageal junction (GE).  We went to the doctor because my husband age 65, would have just ONE hiccup each time he started to eat.  After a couple of months, I insisted we go to the doctor to see if he knew what might be causing it.  He concluded that it was gastrointestinal in nature, and arranged for an immediate Endoscopy.  Wow another word I couldn’t spell or pronounce properly.  But I’m a quick learner.  I always said, “When my husband has cancer, I have cancer!”  Little did I know that I would be diagnosed as Stage IV Ovarian Cancer in November of 2012.  This letter is not about me, but I share that with you so that you know I “come with some experience in the cancer field.”  I’ve worn 2 hats, one as a caregiver and another as a Stage IV cancer patient myself!  So you might say, “I cover the waterfront.  And it would not be presumptuous for me to say, “Believe me, I KNOW how you feel!”  And I know that your life has taken a “U turn”.  You’re now on a road which I hope will be only a “detour” for a time, but a very long time.  Remember I’m speaking from a realist’s point of view.

It does no good to wish for what once was, yesterday’s gone and tomorrow isn’t here yet.  So first things first, what do you have to do today?  And in that regard, I’m delighted to know that you’re searching for survivors.  That was one of the first things I wanted to know.  Is my husband going to live or die?  Oh my soul, we need to make funeral arrangements, as well as write a will, while we’re searching out what on earth to do, where to go, and what’s-this-all-about? whirlwind we were caught up in.  All of a sudden, strange names were filling in the dates on our calendar!  Man oh man, I hope they all made A’s in school.  Although we use the words “practicing method” in a positive sense, believe me, there are some who are only doing that—practicing and we didn’t want to wind up as a “failed experiment!”  You know what I mean.

Now briefly looking at Australia’s health care plan, I see that you can choose to be treated by a specialist that you may choose and there are private plans that you can purchase in addition to the general health care provided by their “National Health care” program.  Believe me—YOU NEED A HIGHLY TRAINED THORACIC SURGEON thoroughly familiar with treating Esophageal Cancer, and one trained in the latest laparoscopic procedures for Esophagectomies.

That “unasked” for enrollment in the medical field began in November of 2002 for my husband.  But I and many others here know EXACTLY your emotional state right now.  As for me, all I knew was that my husband had cancer.  I had never heard of it, but I just automatically viewed cancer as a pending death sentence.  Now I feel a bit more at liberty talking to a realist, so I’ll tell you exactly how I felt.  After asking how to spell Esophageal, and finding that my husband had Esophageal cancer, there was a lot more to learn.  I started in “EC Kindergarten” and worked my way up.  My first emotions were not necessarily one of unbelief, because as we age, we learn to somewhat “roll with the punches”.  And by the time you’ve raised 3 boys of your own and had custody of 4 grandchildren, you’ve learned a good deal about life.  Well, in hindsight, everything else has paled by comparison when we encountered CANCER!

At first, we were so naïve that we said to ourselves, “Chemotherapy—no way that stuff will kill you!”  But the thoracic surgeon in our hometown said, “Please don’t rule it out.  The secretary called us at least 3 times to plead with us to meet with the oncologist.”  That’s how little we knew.  Now we know that clinical trials have concluded that “tri-modal” treatments provide the best outcome for Esophageal Cancer patients.  That means chemo/radiation and then surgery in that order.  However, sometimes doctors perform surgery first, often thinking that the cancer is not that advanced.  And after the operation begins, they find that it is much more invasive than they first imagined.  In that case, if more cancer is found in the lymph nodes that have been removed for pathology, more chemo will be prescribed.  Not one cell should be left untreated!

My time to talk is limited because I have some appointments of my own today, but if I could give you a prescription for treatment for Dad, it would be this.

  • PRAY for guidance from the “Great Physician”
  • Thoroughly research this cancer.  Accept reality—don’t live in denial. (I don’t think you will live in denial—that’s good.)
  • Have a SECOND OPINION.  Most often 2nd opinions will differ in a variety of ways and methods.
  • Bite the bullet, and don’t discount the value of Tri-modal treatment, preferably in this order.
  • Hopefully Dad isn’t a smoker or a drinker, because those are not conducive to being a long-term survivor!  Hopefully, he doesn’t have other medical problems that would preclude aggressive treatments for this cancer.
  • Chemo – radiation & then total laparoscopic surgery known as the Ivor Lewis Minimally Invasive Esophagectomy.  (MIE) Dr. James D. Luketich is the pioneer of this procedure, and any doctors in Australia will have taken their training which first was initiated by University of Pittsburgh Medical Center in Pittsburgh, PA.
  • Be prepared for a tough road and surprises along the way.
  • PRAY SOME MORE – PROCEED FULL SPEED AHEAD
  • After knowing the full extent of Dad’s cancer, he will best be served by having a Medi-port placed in his chest through which the chemo will be administered. My husband’s chemo was Carboplatin/5-FU.  (See Chemocare.com for further info on these drugs.)
  • Scans will be performed along the way to check the effectiveness of the pre-op treatments.  Then surgery will follow.  MIE patients, precluding unforeseen circumstances will fare much better in the recuperative period as far as returning to normal activities, because they have no massive incisions which must be healed.  There is less blood loss during surgery—recovery time is greatly shortened.  Now there is an “adjustment period as to a new way of eating and sleeping” but Dad “isn’t there yet”, so skip that info for now.  But we’ll be here when you need to check back in and say, “Now What???”

Okay will go for now, but happy to talk with you.  Others here will share their own personal stories of survival.  Hopefully, your fears will be allayed, and you’ll be writing here in future days to share your Dad’s survival stories with other new patients who will be traveling this “often weary road” and needing help.

I’ve often said of my husband and me,

 “We’re just a couple of beggars telling another beggar where to find a piece of bread!”

God bless you as you journey on,

Loretta (& William aka Billy)

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P.S.  A few links you will find helpful.

1.  https://csn.cancer.org/comment/1548791#comment-1548791

My letter to “Mister_eko” detailing my husband’s treatment schedule and multiple references that will be helpful.

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2.  https://csn.cancer.org/comment/1548793#comment-1548793

Additional letter to “Mister_eko” sharing my own experiences with chemotherapy

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3.  http://www.upmc.com/media/experts/Pages/james-d-luketich.aspx

Here is a brief bio of our fabulous surgeon who pioneered the IVOR LEWIS MINIMALLY INVASIVE ESOPHAGECTOMY in the mid-90s.  The totally laparoscopic procedure is the surgery all Esophageal cancer patients receive unless there are extenuating circumstances that require open surgery. 

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4.  http://www.upmc.com/Services/esophageal-lung-surgery-institute/treatments/esophageal-surgery/Pages/minimally-invasive-esophagectomy.aspx

How UPMC treats Esophageal Cancer

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