Pamelaann5543-Info 4 your Son-in-Law's Stage IV Esophageal Cancer DX

Dear Pamela Ann,

For the sake of keeping up with your future posts and questions, I’m taking the liberty of putting my answer on a separate topic line, so we can keep up with you should you have more questions.  It helps when “newbies” post on a new topic forum here, so we can follow your story under your original post.  So with that in mind, your first letter of inquiry was listed here - http://csn.cancer.org/node/302026. 

That way folks can read Ed’s reply to you as well relative to your daughter’s husband who has just been diagnosed with Stage IV Esophageal Cancer with metastasis to his Liver.  But, if you don’t mind, I prefer to answer your letter on a “new page”.  So Pamela, as your daughter’s official “researcher”, you’ve been given a tall order.  But she and her husband are going to have to know everything that you know, otherwise, they won’t understand what is happening.  And remember that the doctors will use lots of big words that are familiar to them but “foreign” to you most often.  I always ask them to spell it for me, so I can go home and look it up.  Moreover, someone should be taking notes each time your Son-in-law has a visit anywhere. 

First of all, Ed has given you some very good advice.  And he should know, since he has “been through it all.” It’s an uphill climb just having pre-op chemo, radiation, and surgery, but to then have a recurrence is all too often insurmountable.  But the Lord has our life in His hands, and He alone knows the number of our days. I also have a personal friend here that has lived almost five years as a Stage IV Esophageal Cancer patient.  So her story and Ed’s should give you some hope that there are some Stage IVs that do “beat the odds.”  Naturally, we hope that something good will happen in the case of your Son-in-Law.   

I’m convinced the United States of America has the very best surgeons that know how to care for Esophageal Cancer patients.  That said, Ed described it well.  With Stage IV, cancer is on the “loose” and that goes for any Stage IV.  As much as we would like to “contain it” and “rip it out” of our system via surgery, that is just a dream.  But be bold and ask specific questions of the medical team that you choose for treatments.  If you’re well informed, they will answer your every question.  If you don’t know what to ask, you will have much more anxiety wondering why this or that was done or not done?

We all are shocked when we find we have cancer, but “denial” will be an enemy and not a friend when dealing with the reality of it all.  Pray as we may, it is not going to disappear.  You’re heartbroken, just like we all are.  And each time we meet another person here, we really do grieve for them and pray that they will find the very best care.

So a SECOND opinion at a major hospital who deals with Esophageal Cancer as one of their specialties is where you need to go.  Both we and Ed have been treated at hospitals that rank near the top for Gastroenterology and GI surgery.  Also you should check with your SIL’s insurance to see if he is in a network that limits the medical facilities where he can be treated.  That is sometimes the case.  And some places require a referral from another physician while others do not.  Dr. Luketich does not require a referral.

I would suggest that your son-in-law keep a record of places he has been tested, and ask for copies of all his records, scans, etc.  It will be his responsibility to carry those with him when he goes for another consultation in some new place.  Sometimes the doctor’s office will forward records, but leave nothing to chance.  Sometimes things that need to be done are NOT always done in a timely manner.  You will find that the cancer patient must often be his own advocate, intercessor, watch dog, and sometimes the “physician’s assistant.”  In other words, you have to question everything.

Your daughter-in-law is going to have to “take the bull by the horns” and consider what’s at stake here.  There are some surgeons that are “aggressive” and there are others that will just tell you to go home, get your life in order, because there is “nothing” that can be done.  I would never accept that as a final opinion.

By having a SECOND opinion, (and most insurance companies will pay for one) we averted the most invasive surgical procedure for Esophageal Cancer known as the Ivor Lewis Transthoracic Esophagectomy (TTE) aka “OPEN”.  

Our 2^nd opinion presented an entirely opposite surgical option, that of the least invasive surgery, the Ivor Lewis Minimally Invasive Esophagectomy, (MIE).  So we were ecstatic to be able to travel to the University of Pittsburgh Medical Center and have the surgery back in May of 2003.

You can read more “about us” on my “about me” page, but I’m writing on the Esophageal Cancer forum because my husband is a survivor now into his 14^th year of surviving Stage III (T3N1M0) and it is all by the grace of God I believe.

That said, by way of introduction, my roots are in Southwest Virginia as well.  I was born in Bassett, VA – a small furniture factory town – booming in the 50’s but now all the jobs are in China.  SAD -- When I ride through the town now, all my great childhood memories come to life and I wish the town were still bustling with furniture factories and knitting mills as it once was.  The best part of it was only a couple of street lights, one movie theatre, one drug store and if you closed your eyes you had driven through town without knowing it.  Ahhh to live in a little town again with only a 3,000 population.  Well enough of reminiscing Pamela.  Now we have to get back to reality.

At this point, if the diagnosis is correct, the hopes of having surgery to remove the diseased Esophagus is not an option.  But I know that chemotherapy and radiation are options—“rough though they may be”.  I’m the type of person who wants to know it all upfront, so there will be no surprises, and if the “best” happens to be my lot, then just thank God.  But with a Stage IV diagnosis, trying to slow its growth will be the primary aim because there’s no way to just go “snipping and cutting” out the cancerous parts throughout the body.  How I wish it were that simple.  So below my name I will give you some helpful references to help you understand just what Esophageal Cancer is and how it is treated.  At the end are links to the USNews &World Report rankings of the top hospitals for Gastroenterology and GI Surgery. 

Ed has mentioned HER2 testing.  Some cancer patients possess an “overexpressive” gene that causes the cancer to multiply more rapidly than usually happens.  And most often, if the patient doesn’t ask for that testing to be done, it isn’t mentioned by the doctors treating the patient.  So if your SIL has that overactive gene, then a drug called HERCEPTIN should be prescribed.  It is not a chemo drug, but will be given in addition to the chemo drugs that are prescribed.

As for my husband, he was given the chemo drugs Carboplatin and 5-FU, as well as 25 treatments of radiation and then the MIE surgery.  This is a common prescription for many patients who present with Esophageal Cancer.  And as frightful as the words chemotherapy and radiation are, hopefully they will be a life-extender for your SIL.  Now if someone is going to have to “hold your daughter’s hand” then find that person quickly because decisions made now are going to be critical, because time is of the essence in treating this cancer before it spreads elsewhere as it loves to do!  So halting or curtailing the spread is urgent.

There is one precaution I would want to share with you.  The more informed the patient and caregivers are, the more intelligent questions they will know to ask.  I’ve learned that most doctors will only tell you as much as you ask about.  And of course, they don’t have time to “spoon feed” us.  That’s where some good help from others who have traveled this road before you can be of help.

With that in mind, I will tell you that difficulty in swallowing is a common problem.  And it is often the reason that people finally succumb and go to the doctor.  Then when an Endoscopy is performed, they learn they actually have Esophageal Cancer.  As for my husband, his only symptom was a pesky hiccup, so you can imagine how shocked we were to learn that “hiccup” could also be pronounced “cancer.” Moreover, heartburn can also be spelled cancer.  Now who goes to the doctor complaining of heartburn?  And even if they do, not many doctors will refer you to a Gastroenterologist to have an Endoscopy.  Usually, they will only prescribe some kind of Omeprazole (acid blocker) and send you on your way.  Oddly enough, that is precisely why some patients present with Stage IV EC from the very beginning.  Nexium can actually “mask the symptoms” of Esophageal Cancer.  That has been confirmed several years ago now.  And actually, the instructions indicate they are not for long-term use.

But not unless one has an Endoscopy will they learn to their dismay that often they already have cancer. So yes, heartburn and hiccups can be indicative of cancer.  Now smoking and drinking are culprits as well, but my husband doesn’t smoke or drink, and neither do a good many of the people who come to be diagnosed with Esophageal Cancer.  And as you can see, it is not relegated to “old people” although most are older when diagnosed.  We had one young girl here who was only in her early 20’s when diagnosed with Stage IV.    

I’ve said all that intending to say this.   If difficulty swallowing is a problem for your son-in-law, I’ve learned from many former patients on this site, that a stent is NOT the best way to go.  Usually, it causes more problems.  Some have said, they never had another well day after the stent was put in.  Some started to have constant coughs and others had terrific back aches. Also others had food that went through the stent, and then pooled at the bottom and never made its way to the stomach.  On other occasions, the tumor became embedded with the stent itself, and could not be removed.  I’m not a doctor, but I have read of all these happening when an Esophageal cancer patient had a stent placed in their Esophagus to make swallowing possible.  So I say, “A word to the wise is sufficient.”

That is why a J-tube is preferable.  He will have a better quality of life, and be more able to tolerate the chemo therapy treatments he will have.  He must keep up his energy because “fatigue” is most often a companion of chemotherapy. Also, loss of appetite and nausea are side effects of chemotherapy, and if one is unable to eat, a stent will do no good either.  Whereas, the J-tube is a small tube that is surgically implanted in the second section of the small intestine known as the Jejunum.  From here all the food will be used by the body and he will be able to keep up his strength.

Moreover, a big gastric tube (G-tube) is cumbersome by comparison.  And even then the stomach may not cooperate as it should.  There’s a big difference between a “J-tube” and a “G-tube”.  So just in case swallowing and rapid weight loss are problems, and they often are, be sure to ask for a “J-tube” right away—don’t just settle for whatever the doctor first suggests.  A stent would be the very last thing I would want, then second to that would be the “G-tube” where food is poured into a tube manually.  I wouldn’t want that either.  My husband had a “J-tube” implanted during his surgery.  But some patients have one surgically placed when eating becomes almost impossible prior to any surgical procedure.  Weight loss is not uncommon with chemo treatments, as nausea is usually a “pal”.  But so much for that now.  In order to sustain long-term benefits from medications, if swallowing is a problem and the patient is unable to eat, a “J-tube” is preferable. 

And also, by all means, a medi-port should be put in place for long-term chemo infusions. So be sure your son-in-law has a medi-port put in place prior to any chemo sessions.  It is a small device implantable on the right side of the chest up close to the clavicle (collar bone).  Medications of other kinds can be given there as well.  It is a wonderful device.  I have one, and so did my husband when he was having his chemo.  It will require “flushing” every 4 to 6 weeks by a nurse trained in that field.  It’s a Godsend and keeps one from having to suffer with collapsed veins from repeated treatments. 

In years gone by, I made friends with a wonderful intelligent caregiver named “Sherri” whose husband was diagnosed with Stage IV EC when he was only 48.  I will tell you that he lived 2 years, and in that time Sherri was like a nurse, so intelligent and a great researcher and source of information.  She doesn’t post here now, but I have kept copies of most of her writings.  We became good friends and I have her permission to repost anything that I consider useful for those with whom I speak. With that in mind, I hope that many of the references I share will point you in the right direction.

The most we survivors can do is tell you where to go to find some help.  So Pamela, hold on because it’s going to be a rough ride, I may as well be truthful.  I’m not one that will rub “Rosebud salve” on a cancer.  We’ve got to face the day.  And you are doing just that.

So hopefully you can soon decide as to the very best place to seek treatment for your SIL.  And just because the Cancer Treatment Centers of America does a lot of advertising on television shouldn’t cause you to rush there.  There are many comparable medical hospitals of equal capability to handle Esophageal Cancer patients.  But you will have peace of mind when you have two opinions.  Sometimes the SECOND opinion will serve to verify all that you learned from the first opinion.  Then again, they may do more testing and suggest a different approach.  So that’s the advantage.  In this case, “Two heads really are always better than one!”

So Pamela, forgive me for trying to tell you everything I’ve learned since 2002 about Esophageal Cancer, but more is always better when one doesn’t know which way to go.  Believe me, we all were in the very same place that you are now—needing to know oh so much more in order to make the best decisions. 

And as for second opinions, I wouldn’t even count a “community hospital” as a first reference, I would either have the doctor set me up an appointment with a great hospital or call myself.  Your Son-in-law’s choices will obviously depend on his ability to travel and his insurance carrier.  Finding one of the best aggressive Thoracic Surgeons would be my first choice as to which hospital to consult.  Of course, my very first recommendation is Dr. James D. Luketich at the University of Pittsburgh Medical Center, because that is where we received such excellent care.  And Ed likes Johns Hopkins.  Both are critically acclaimed and rank near the top of all hospitals in the U.S. for Gastroenterology and GI surgery.

And one last thing, HYDRATION is extremely important to maintain energy.  Don’t let the doctors pretend this isn’t a necessity, it IS!  You will find that if you insist on something that you know would benefit the patient, then the doctors will usually go along.  I informed my oncologist that I wanted a medi-port and I also wanted hydration after each chemo treatment, and he said, “NO problem.”  So I’ve never had a problem with getting all the help I’ve needed, and haven’t had to BEG for it. 

Now Pam, you have your homework assignment cut out for you.  When you finish this “assignment” you will feel like an expert.  You will know what questions to ask, but be sure to choose a medical team that is highly skilled in the treatment of Esophageal Cancer.  There are several to choose from here on the East Coast, so at least you don’t have to travel to California.  I will say this, when making a choice, check out the doctor’s credentials.  Has he written any professional papers that have been accepted by top medical journals for publication?  This will give you some idea of their level of expertise, and of course, they will have served at some of the top hospitals.  If you have a local doctor whom you trust above all others, ask him for a recommendation.  Then check out that person on a site such as http://www.vitals.com/ as well as in the USNews & World rankings listed below as a reference.

At “Vitals.com” you can search by specialty, condition, topic or name. It may well be that after you have had two opinions and both are in agreement, the treatments may be administered by an oncologist closer to home.  UPMC kept in close touch with our oncologist here at home.   Chemo and/or radiation treatments will be of a long duration, and so being close to home for the actual treatments is best.  BUT … when you’ve decided on a treatment then the two teams—the oncologist and the team making the recommendations—should be in close contact.  They should be “sharing” all tests results, etc. 

I know you have a heavy heart, and are overwhelmed at this point.  For sure, this is an overload of information, but since I’ve already been where you are going, this info will help by pointing you in the right direction.  Believe me, none of us knew which way to turn when we learned we had cancer.  I’m just sorry to know that Stage IV is in the picture.  But by all means a “Second Opinion” is a must to be sure of what treatments are best for your Son-in-law’s specific diagnosis.  So here’s praying that God will guide you to make the very best choice, and that your SIL will have treatments that will afford him some quality of life even though surgery seems not to be an option.

Sincerely,

Loretta (William’s wife) William’s diagnosis Adenocarcinoma at the GE junction, pre-op chemo and then MIE surgery on May 17, 2003 @ University of Pittsburgh Medical Center by Dr. James D. Luketich.

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(Letter from my friend Sherri) –

“APRIL 15, 2010 - 6:29 P.M. - FOR THE “NEWLY DIAGNOSED

You are about to enter the roller coaster from Hell.  Unfortunately, you don't have time to feel sorry for yourselves.  You must move on to fight the beast.  Whether you are stage I or stage IV, only believe half of what is told and rely on your own knowledge of yourself or your loved one, with the exception if you get a doctor who is upbeat and willing to go the extra mile for you.  Remember whatever they tell you is statistical, clinical or factual, and that they don't know you as an individual.  Since coming on in June of 2009, I have read many stories whereas the patient, or the spouse, is afraid to confront the doctors, or to get a second, or even a third opinion.  I have also read where the caretaker is afraid to take control of the situation due to either fear or an uncooperative spouse or patient.

Remember to question everything and anything and if the doctor doesn't like this then find another.  Remember that you are the patient and that they are working for you.  Research everything and talk about it in your appointments.  Never be frightened to ask questions.  Even better is when you are with the onco staff, ask then whom I may call to get immediate answers.

Know your cancer!  Look up where it may metastasize to and be one step ahead with questions or clinical trials.  Don't hesitate to ask them about the HER2 gene and has my tumor been tested? Remember to ask about supplements that can help you while you are on chemo or radiation.  Ours allowed us to do what we wanted, especially for chemo-related neuropathy.

When you are first diagnosed, we sit their numbly, dumbfounded, afraid, intimidated, shell-shocked and can't believe what we are hearing.  Well believe it quickly, take a few deep breaths and begin the fight. The ones that delay treatment are the ones that suffer in the long run.  Don't dwell on "I should haves," or "I could haves," it's too late for that. Get going on the cure or the treatment.  You can still lead a productive life.  Push yourself and do not give up hope.  Ever!!!

Only God knows when it is your time.  Have faith in yourselves and know that you are not alone.  We are here to answer your questions to the best of our ability.  We have been through heartache.  We have lost loved ones dear to us. We have cried together over someone we have never met.  We are a family and you may not like what we have to say but we care and have the experience.

You will meet people here that have experienced it all.  We have people that have been fighting for their lives all along but continue success.  We have our "not-a-surgical-candidate" patients that have overcome their projected life spans and are doing well.  We have people that have had the surgery and have been cured or are in remission.  We have had many who have lost their loved ones but still come on to help others.  They share their experiences without a second thought.  Many give out their personal phone numbers to help some and others become great friends even though they have never met.  Just remember that you are in the right place and you will get honest, experienced answers from people who have walked in the shoes of esophageal cancer.

Good luck and best wishes to all of you in your fight against esophageal cancer.  There will always be someone here to answer your questions the best they know how to.  Remember that we here have had success no matter how old you are.  Our goal is to beat it now or in the future by helping others. You are never alone!

Sherri"

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References for you to research