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Steve~Life's more than a game of Russian roulette or a coin toss

Dear Steve –

Although I’m on sort of a self-imposed sabbatical because I am currently on chemo treatments for my own Stage IV Ovarian Cancer diagnosis, I feel compelled to answer you.  I have two good “responders” on this site who are always helpful and they’ve been doing the “heavy lifting” for some time now.  I see Paul has answered you and please take his advice.  He knows what he is talking about.  However, I cannot resist answering your questions.

Steve – you’ve asked some very direct questions and I’m not averse to giving you some very direct answers coming from the viewpoint of a cancer patient myself, with a terminal diagnosis.  So bear with me.  For tonight, since it is late already, I will only cover the basic questions you have asked.  Normally, I compile a very detailed list of things each “newbie” should know, but for tonight, let me give you some “sage advice” from an “oldie” writing to a “newbie”. 

FIRST off, don’t write yourself off at age 69!  With a Stage III diagnosis and no lymph node involvement and no metastasis (spread) to distant organs you are in a good place.  I imagine your diagnosis is Adenocarcinoma at the Gastroesophageal junction.  Although it is never a diagnosis that you would desire, you are in an enviable position.  If you were a Stage IV, you would only be eligible for palliative surgery that would most likely include radiation and chemotherapy, and even then the meds would depend on where the cancer had spread.  Different chemos work differently on different diagnoses.  So count your blessings to be able to have the prospect of surgery in your “long-distance vision.”

SECONDLY – You may fare well with the chemo and radiation or it may send you for a loop that will make you wonder if you will survive it.  You haven’t included any extra info on your “about me” page, so I have to guess at what you’re going to be having in the way of chemotherapy.  The schedule you’ve outlined is normal for a person after all tests have been completed.  Since chemo is cumulative, you will probably have an interim CT scan to assess your progression and how the chemo is working.  Then after completion of the 6^th cycle (that depends on an individual as to how often the chemo is given and how often the radiation is given).

At the end of treatments, it is not unusual to wait 3 weeks or so to perform the final PET/CT scan to see how effective the treatments have been.  And because scar tissue buildup is common from the radiation especially, a surgery date will then be scheduled.  So this is taking for granted that all will go well, and that the neo-adjuvant (pre-op) treatments will all go along well without a hitch.  I would suggest that you key in http://chemocare.com/.  Then find the names of the drugs that you are receiving and you will understand the side effects that many of us will experience.  Some sail through with little difficulty while others are “sick as a dog” to use an old phrase, meaning “bad off!”  Remember, I’m not about dancing around the truth about Esophageal Cancer. 

THIRDLY, you write “My concern is more on my location and the number of these operations that are performed every year.  I do have a surgeon that is no doubt qualified but I have to ask myself how long has it been since he was doing them on a weekly basis and how many since he moved to here as well as how much of his skill has deteriorated over that time period.”…………………..Now Steve, are you talking about the location of your cancer or the place where you live?  Are you wondering about the medical facility at which you are currently being treated and wondering just how well qualified your surgeon is to perform the operation.  I believe you’re talking about where you’re being seen presently.  Those are very important questions to ask.  There are surgeons and then there are “surgeons” and they didn’t all make the same grades at school.  I know some very bad surgeons at performing esophagectomies and I know some excellent ones. 

And mind you, you may be saying just who is this lady and should I listen to her?  I’ll save my “credentials” to the end if you don’t mind.  For now, I’m concerned about you and your present state of mind as far as your future is concerned. Believe me—my husband and I have had all the misgivings and misconceptions you are presently entertaining.  We know you are in a dither and don’t know what to do.  And believe it or not, we’re glad you wrote here.

 FOURTHLY -     If I were you, I would always have a second opinion, and that can take place by presenting your medical records to a well-known hospital that specializes in Gastric surgery, the category under which Esophageal Cancer is listed.  You’ve got some legitimate concerns there.  There are different types of esophagectomies ranging from “TransThoracic (TTE) “open” (the most invasive) to totally laparoscopic (Ivor Lewis Minimally Invasive Esophagectomy) – aka MIE – the very least invasive.    I would settle for nothing less than the totally laparoscopic surgery. 

Then it would also have to be at a highly-rated hospital that has as one of their specialties the “Minimally Invasive Esophagectomy”.  Don’t “settle” for less than the best, and sounds like you may have good insurance since you’ve been taking care of your finances very well.  So much for that on surgeries for now--remembering that it’s late already tonight.  You’re getting a condensed version of what I would normally write.

FIFTH – You write:  “I keep coming back in my mind to the same place and that is what is more important to me at this time in my life.  I am 69 years old and will be almost 70 by the time we do the surgery.  The question I keep asking myself is this.  Is the quality of the rest of my life more important than the few years I might gain?  If the chemo and radiation are successful and when we do the pet a few weeks later and it looks to have killed it do I flip the coin and hope for the best and do a booster to make sure we killed all of it or do I go thru with the surgery…”

Steve, 70 years old is not ancient and esophagectomies have been performed on people in their 80s. So don’t let your age be a factor.  Now you haven’t told us what your symptoms were that made you go to the doctor in the first place.  Most often people complain of difficulty swallowing and as a result change their eating habits or suffer with heartburn and take some kind of acid reducer trying to stop the pain.  Nevertheless, forget your age—that’s immaterial here!

You ask, “Is the quality of the rest of my life more important than the few years I might gain?”  Seems to me you are “figuring out how the rest of your life will go if you don’t have surgery and if you do!”  Since you’re a newbie, I’ll accept the fact that you’re in a dither and rightly so.  But Steve, you’re not in charge of the rest of your life, are you—I’m certainly not! 

You seem to be saying I’m not feeling so bad right now so do I want to forfeit the way I feel presently and take a gamble on surgery that may or may not work?  Steve, this chemo may not be a “piece of cake” and you may ask yourself if you’re gonna’ live through it, so you’d better take it one day at a time, instead of getting that far ahead of yourself.

Steve, when my husband was diagnosed his doctors told him that even if the pre-op chemo and radiation prove to be successful and checked out as completely eradicated on the follow-up PET scan, you will have the surgery.  They explained that even with scans, there are sometimes cancers that are not actually discovered until the actual surgery is being performed.  So there’s no guarantee that “it’s all gone” and there certainly isn’t any “booster shots” to make sure it’s all gone.  I must tell you that “recurrence” is always a possibility.  The earlier the stage, the better the chances that it will not recur, but you need to know that Stage III Esophageal is not “early”—it is in the advanced stage category!  So forget that notion please!

Your life is worth more than the “flip of a coin” Steve. I liken a person that thinks that chemo and radiation will completely eradicate esophageal cancer to a game of Russian roulette.  Only in this case, instead of one chamber loaded with a bullet, how about all the chambers but one are loaded with a bullet?  That’s the game you would be playing.  So if there are 6 chambers, and 5 of them are loaded, do you want to take that chance?  And with the flip of a coin, there’s a 50% chance you’ll be “dead wrong” in your decision-making process! 

STEVE – SHORT ANSWER – YOU GO THROUGH THE SURGERY and be darned thankful that you are a surgical candidate!

You also write: “I went back to work after 5 years last year and pulled my family pretty much out of debt and am supposed to go back this year about the time I am supposed to have the surgery.   I work seasonal so time is always a factor when I work. 

 Do I put my family first and try and pull us completely out of debt so if the worst happens they are debt free and our home is in good condition so they do not have that burden or do I say to heck with it and do the surgery and become a burden for at least the next 9 or ten months and never have the chance to go back to work like I can now.”  

Well Steve here again I’m glad you asked.  My husband was 65 at the time of his Stage III EC diagnosis, T3N1M0 meaning all 4 walls of his esophagus were infiltrated and two of the local lymph nodes near his esophagus.  As newbies, we heard the words “chemotherapy” and thought, “Heck no way—that stuff will  kill you!”  Little did we know. 

The surgeon explained that if we wanted to see our grandchildren grow up, we would take care of ourselves first or else they would be without one of their surrogate grandparents.  And Lord knows, I didn’t want to be a widow at age 63 with 4 grandchildren to raise all by myself.  That put things in perspective.  In other words, if you care about the rest of your family, you will do what you have to do NOW or you won’t be around to raise your grandchildren!

So Steve, if you want to be certain that your family is “taken care of”, you must first take care of yourself.  Does that clarify things for you?

 
LASTLY – You ask, “Do I say to heck with it and do the surgery and become a burden for at least the next 9 or ten months and never have the chance to go back to work like I can now.”  

Steve—that is not so difficult to answer if you’ve lived with a Stage III cancer survivor as long as I have.  YES—YOU SAY “TO HECK WITH IT”—I’M GOING FOR THE SURGERY!

I believe your wife will be glad to have the opportunity to be your caregiver, because she wants you to be around for a long long time!

If you read my “about me” page by clicking on the photo of me and my husband, you will find a summary of our story.  It’s difficult for me to be short, but in summary—

My husband was diagnosed at age 65 with Adenocarcinoma at the GastroEsophageal (GE) junction – T3N1M0 in November of 2002.

He had pre-op treatments of Carboplatin & 5-FU plus 25 radiation treatments here locally.  We live in Virginia Beach, VA.

After treatments, Final PET/CT showed tumors completely eradicated.

SECOND OPINION @ the University of Pittsburgh Medical Center.

We chose to have the totally laparoscopic minimally invasive esophagectomy performed at UPMC by Dr. James D. Luketich.  He pioneered the MIE in the mid-90s.

Surgery took 7 hours, although some may take less—some may take more. 

Surgery date was May 17, 2003 and was totally successful—no complications.

He had small Band-Aid size cuts—no massive incisions. 

Total hospital stay of 5 days—only one day in ICU. 

Discharged on Day 5 and downtown shopping with me in Pittsburgh, PA on Day 8. 

Recovery time is shortest with the MIE and husband’s energy level was back to normal within 5 to 6 months. 

The first 3 months after surgery, we toured 3 different states and he did ALL the driving.

Nowadays his limitations are based solely on being 81 in February.  All of us “oldies” know what that is like.

We are proud to be able to share our story of success that took place 15 years ago! Our grandchildren are grown now and we have 3 great grandchildren.  We are blessed and even though all will not enjoy the same joyful story, who knows that yours will not be similar to ours.

So Steve—don’t play Russian roulette or flip a coin—your life is too precious—take care of yourself first so you can take care of your wife for hopefully many long years to come! 

Most sincerely,

Loretta (William’s wife)