Sherdave-More Homework - Gleaning gems of advice from others who've gone B4 U will serve U & Your hu

LorettaMarshall

 

Hello Sheryl:

Pull up a comfortable chair and we’ll continue the chat I started with you earlier. 

It occurs to me that the information that Paul61 and I have posted is vital to every "newbie."  He and my husband have gone through one of the most intense and major surgeries one can have.  Yet they are both alive to tell about it.  Paul approaches it from the angle of not knowing about the Minimally Invasive Esophagectomy at the time he had his surgery.  And though he had his "insides rearranged" in the same manner as did my husband William, their recoveries took an entirely different route.  You see while there are many similarities between them, there are many differences between the routes their recovery took.  Paul61 and I have covered the most important facts a “newbie” needs to know.  He wants to make sure that anyone that is a candidate for an Esophagectomy knows that there are 3 basic types of surgery to remove the cancerous Esophagus.  I am glad he posted those for you, because my letter is written from the standpoint of my husband’s totally laparoscopic Esophagectomy (the latest surgical approach) while Paul is able to tell you what repercussions can occur from having the “original” OPEN Ivor Lewis Esophagectomy, known as the TransThoracic. 

For all newcomers all these terms are understandably confusing.  For those of us who have already “been through it”, we know all too well, the perilous pitfalls that one can experience.  That is why we take the time to compile some information that newbies need to know.  The smartest patients will learn from others’ experiences.  And believe me, there is a wealth of information to be learned, but unfortunately what we know and say is not always well received, although our intentions are good.  After one has been diagnosed with Esophageal Cancer you certainly do fall into a different world that you never knew existed before.  And either you can pretend that you will handle this like all the other problems in life you’ve had to tackle, or you will say, “Oh my, I’m gonna’ need some help!”  So we have some who write here and then totally disregard all that we have to say.  Others write and say, “Thank you for alerting me to the essential things I need to know about this cancer.”  That is where you are smart to bypass the “denial” stage and plunge into the world of reality.  You’re here now, and finding out how your husband gets out alive is your main goal.  So make yourself a little notebook of entries, because as you progress on this journey, things that we share with you now will make more sense later.   We can tell you what to look out for because we’ve already been where you are going!  So we applaud you for being smart enough to ask questions.  In that regard, here is a link that will inform you on some of the first questions you should ask once you realize “wow I think we’re in over our head.”  Yes you need some help, and it’s our joy to share our personal EC experiences with you.  I sense you are a “good listener.” 

This is a well-written web link that breaks down all the different things one needs to consider after having been diagnosed with Esophageal Cancer

1.     http://news.cancerconnect.com/newly-diagnosed/ 

Here you will see the diagnosis of cancer broken down into topics, one of which is “Questions to Ask”…

Newly Diagnosed Topics

 What is Cancer?

 Diagnosing Cancer

 Introduction to Cancer Treatment

 Your Cancer Treatment Team

 Optimizing Your Treatment

 Questions to Ask

 A Word about Clinical Trials

 Getting a Second Opinion

   The Role of Caregivers

Then specifically on this same site, you will find information on important things to know  about Esophageal Cancer in particular.

2.      http://news.cancerconnect.com/types-of-cancer/esophageal-cancer/

Topics - Esophageal Cancer Management

 Overview of Esophageal Cancer

• Barrett’s Esophagus

• Stage 0

• Stage I

• Stage II

• Stage III

• Stage IV

• Recurrent

• Surgery

• Radiation Therapy

            You will want to pay specific attention to this subset of topics relative to the Staging of Esophageal Cancer.  We cannot tell you how many patients never bother to inquire about the drugs they are taking, or the Stage of their cancer.  My husband attends a monthly EC support group here and when he asks “What stage are you? CLUELESS, they shrug their shoulders and say, “I’m just doin’ what the doctor says.”  That can be both good and then again "not so good".  Choosing to not inform oneself can be a recipe for disaster.  There are different treatment options for different stages of EC. 

          For instance, if you’re a Stage IV EC patient, sad to say, you are NOT going to qualify for an Esophagectomy.  Palliative measures such as radiation, chemotherapy and feeding tubes are often the standards but no surgery to remove the diseased Esophagus.  At this stage, it has already metastasized (spread) to one or more other major organs.  If feeding tubes are a part of the treatment, then there are different types of feeding tubes, and some are better than others.  And as for stent placements, they have  NOT been found to be a magic bullet either.  And like other devices, there are different types of stent designs as well.  More often than not (for patients surveyed on this site),  stents have posed as many problems as they have helped.  Back aches, constant coughs, and migration which necessitated removal just to name a few.  Sometimes the stent becomes embedded with the tumor itself and cannot be removed. 

           As usual, my disclaimer here--these are my personal observations gleaned from conversing with countless EC friends, yet my info should not be taken as the final word on what you need to do.  That's for you two to discuss with your physicians.  But knowing that such problems can exist is helpful if and when stents might be a part of your husband's treatment.  Hopefully, the subject will never come up. If the patient has a stent, and is undergoing radiation , radiation can often shrink the tumor and cause the stent to migrate downward and it will have to be surgically removed.  That's what I mean by migration.  But you're not at that point now, thankfully.  Don't worry about that now.

            So, in short, (which I never am), I’m proud of you for “doing your homework” and being armed with good information from reliable sources as you proceed down this “yes treacherous” road.  It will take many turns from diagnosis to recovery.  However, laying out a good EC map, will enable you to avoid a lot of detours along the way.  Paul61 will be able to give you deep insight from the standpoint of having had the OPEN Ivor Lewis surgery with two massive incisions, and the problems he encountered.  Our EC journey is from a different perspective of having had the “modified” totally laparoscopic Ivor Lewis Minimally Invasive Esophagectomy and his recovery process.  Both experienced the same aspects of “after-surgery” adjustments to a new way of sleeping and eating, even though recovery times were quite different. So after surgery, there are many similarities as far as the new "gastric conduit" becomes operable.  Don't plan on chomping down on steak for quite a while, and expect some weight loss.  Paul will readily tell you he wishes he had known about the Ivor Lewis MIE at the time of his diagnosis.  So do we, but we had not met at the time of his diagnosis.  We're now good friends.  He and my husband William, are both elated to be alive to tell about it!  Presently, they are both celebrating and enjoying a great quality of life for which we thank God.    

          For now, your major decisions are: 

• 
  
  Am I sure this is the right diagnosis?
  
  
• 
  
  Are these the best chemo "cocktails" for my husband's stage and type of cancer?
  
  
• 
  
  Should I have a Second Opinion or just trust what my first doctor is telling me?
  
  

• 
  
  Will my husband be a surgical candidate?  If so, what types of surgeries are there?  If so, which one has the best outcome overall?
  
  

          And that is why you are so wise to ask patients who have actually traveled this road before you.  And so as not to repeat myself too much, I will reference my other letter to you here.  It says even more than I have said here, plus an extra letter in my files from my dear friend Sherri whose husband was diagnosed with Stage IV at the age of 48, and passed away at the age of 50, leaving her with 3 beautiful children to raise.  Her experience and vast knowledge is unique.  And so from time to time, I will be sharing helpful suggestions from her in my writings here for EC patients.  But for now, I will go and just tell you that my husband and I are so pleased to know that you are “collecting all your thoughts NOW, so you can avoid some of the detours that less-informed patients will take.

            So here is the reference for my other letter to you entitled “Sheryl-What? Where? When? Life-altering choices U2 must make! “--- http://csn.cancer.org/node/299233#comment-1526579

As always, we wish you and your husband all the best.  May God give you the wisdom to choose wisely.

Loretta Marshall

Still a Happy Caregiver from so long ago now, to my husband William, who is entering his 14^th year as a cancer-free Survivor of Esophageal Cancer, Stage III (T3N1M0).  Dr. James D. Luketich at the University of Pittsburgh Medical Center (UPMC) performed the Ivor Lewis Minimally Invasive Esophagectomy (MIE) on May 17, 2003.  

 

 

sherdave

Thank you!!

Loretta and Paul, thank you so much already for the information. It is a lot to absorb and we are going to review it carefully. I really appreciate your taking the time to share so much.

Sheryl