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

LorettaMarshall

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

 

LorettaMarshall

Pamellaann5543-Part 2 of my ltr re your SIL's Stage IV EC DX

Pamela - These are the references that simply would not "post" with the rest of my letter to you.  So I am trying to make a separate post, as you need to know about each one of these.  You might say this is your "homework" assignment since you say you are the researcher.  But your daughter needs to "take the test" after you supply her with all this info.  Your Son-in-law needs to know all this as well.  Now I know this is "information overload", but I suggest you print it out, and just make yourself a little journal.  Then you can reference it at will, and won't have to return to this link to see what was said.

Let us know how things go.  I'm pleased to be able to share this information with you but saddened to have to do so at the same time.  May God bless you, your daughter and your son-in-law, and all the other family members and friends that will be walking this road along side you.

Loretta Marshall (William's wife)

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references -

1.  http://news.cancerconnect.com/newly-diagnosed/questions-to-ask/ 

Questions to Ask Your Doctor about Cancer Treatment

Being educated and informed will help you make the best decisions about your cancer treatment. Get all the information you can as early as possible concerning your evaluation, treatment, and possible side effects. The sooner you know about side effects and possible treatments, the more likely you are to protect yourself against them, or manage them more effectively.Your doctor and nurse are your best sources of information, but you must remember to ask questions. There is no such thing as a dumb question. Don’t be afraid to ask anything that is on your mind. To make the most of your opportunities to learn from your health care providers, read as much as you can and make a list of questions before each appointment. Also, ask family, friends, and your support team to help you remember the questions. These approaches will help you talk more effectively with your doctor or nurse. Finally, you or your caregiver should consider taking notes during your visit to ensure you remember what you learned.

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 2.  http://www.webmd.com/cancer/features/cancer-when-do-you-need-a-second-opinion-and-why

“…After you’ve been diagnosed with cancer and your doctor has outlined your treatment, you may still have a nagging doubt: what if my doctor is wrong? No matter how much you like or trust your oncologist, it’s natural to wonder if something was missed or if a new treatment is available. If you have any doubts, get a second opinion…”

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3.  http://www.cancer.gov/types/esophageal/hp/esophageal-treatment-pdq#section/all

 NIH Esophageal Cancer Treatment–Health Professional Version (PDQ®)

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4.  http://www.gastrojournal.org/article/s0016-5085(08)01431-5/fulltext

“…HER2 Amplification in Micrometastatic Esophageal Cancer Cells Predicts Prognosis - Herceptin is a humanized antibody, designed to target and block the function of HER2, a protein produced by a specific gene with cancer-causing potential. The mode of action of Herceptin is unique in that it activates the body’s immune system and suppresses HER2 to target and destroy the tumor…”

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5.  http://www.roche.com/media/store/releases/med-cor-2010-10-21.htm

“FDA approves Herceptin for HER2-positive metastatic stomach cancer…First targeted medicine shown to improve overall survival in HER2-positive stomach and gastroesophageal junction cancers…”

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

“Esophageal Cancer Information Center

Knowledge is power. Are you facing a new diagnosis, recurrence, living with metastatic disease, or supporting a loved one through their cancer journey? The Cancer Connect Esophageal Cancer Information Center has current, evidence-based information for you. Get the facts about esophageal cancer early detection, treatment, and survivorship, and stay up to date with ongoing esophageal cancer research that could impact your treatment decisions through our daily cancer news…”

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7.  http://chemocare.com/chemotherapy/drug-info/default.aspx

Chemotherapy Drugs and Drugs often used During Chemotherapy.  I find this link most informative.  It will list side effects of each chemo drug, and how to best cope with them.  It’s extremely important to have hydration and there are injections that will boost the white blood cells (immune cells). Two drugs are available, Neupogen and Neulasta. I always went back in each time after treatment and was given an injection.  If the white blood cell count drops below a certain level, that will temporarily halt the chemo treatment, until it builds back up, so it is important to not miss a session.  It’s also smart not to allow visitors who have any kind of sickness.  I have worn a mask to some sessions to keep from catching other’s germs.  Once I had to go to the Emergency room in the winter, and there was so many coughing and hacking people in there that I feared I would come home with more than I went in with!  The only way to get preferential treatment is to be hauled in on a stretcher.  I know once that’s how I arrived!

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8.  http://www.healthline.com/directory/3dbodymaps

A great resource that gives 3-dimensional views of all the body parts, so you can understand the closeness of one organ to another.

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9.  http://www.cancerresearchuk.org/about-cancer/what-is-cancer/how-cancer-can-spread/where-cancer-can-spread

Good information on what cancer is and how it spreads.

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10.  http://csn.cancer.org/node/301791

This is a letter I wrote to Brad when he came here to ask questions when he discovered he had Esophageal Cancer.  You will, no doubt, identify with much that is written herein.

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11. http://csn.cancer.org/node/301620

Here is the link that I posted on the “Peritoneal Cancer site” addressed to “BrianFromTheNorth”.  My own Stage IV cancer is Peritoneal Carcinomatosis/Ovarian Cancer Stage IV, so I am monitoring 3 sites.  So here is that link for tips on things I learned to better manage during my chemotherapy sessions. These tips will be helpful when he begins chemo treatments.

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12.  http://csn.cancer.org/node/302026

In this link, I wrote to both “Daddyshelper” and “Rjollie”.  They are very long letters.  These are some good references, however, I believe “rjollie’s” brother is going to be a candidate for surgery, so the type of info will differ as to treatment for a Stage IV patient.  However, as in Ed’s case, he is enjoying a good quality of life still as a Stage IV EC patient.  So there is hope for longevity, even for the most advanced stage.  Of course battling cancer in the Liver and the Esophagus is a “double whammy”, and takes a toll on bodily functions.  But you will want to seek out a hospital that is willing to try aggressive treatments. 

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 13.  http://news.cancerconnect.com/clinical-trial-information/

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14. http://news.cancerconnect.com/clinical-trials/

“…Although there is currently no single, comprehensive source of available clinical trials, eCancerTrials.com’s provides information on more than 2,000 clinical trials being conducted by leading cancer researchers from all 50 states. These clinical trials evaluate novel treatment approaches and new cancer drugs in all major cancer types, including breast cancer, colon cancer, prostate cancer, lung cancer, lymphoma, leukemia, and many others…”

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15. http://www.cancer.gov/about-cancer/treatment/clinical-trials/search

Search for a clinical trial sponsored by the National Cancer Institute by typing in the diagnosis and zip code.  There is a chat-line number on this site so you can call and ask more about clinical trials. 

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16.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-what-is-cancer-of-the-esophagus

This is a comprehensive guide to Esophageal Cancer.  Followed step by step, you will have learned all the basics of Esophageal Cancer. 

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17.  http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-treating-by-stage

This link covers how each stage of Esophageal Cancer is treated. 

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18. http://health.usnews.com/best-hospitals/rankings/cancer 

 Best Hospitals for Cancer -

 You can find information here about 902 hospitals in Cancer. All treat significant numbers of difficult patients – a hospital is listed only if it treated at least 241 such inpatients in 2011, 2012 and 2013. The 50 top-scoring hospitals are ranked. The rest are listed alphabetically.

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19. http://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

Best Hospitals for Gastroenterology & GI Surgery -

You can find information here about 1,572 hospitals in Gastroenterology & GI Surgery. All treat significant numbers of difficult patients – a hospital is listed only if it treated at least 567 such inpatients in 2011, 2012 and 2013. The 50 top-scoring hospitals are ranked. The rest are listed alphabetically.

________________End of your homework assignment Pamela____________

 

pamelaann5543

son-in -law

Hi Loretta,  first I can't thank you enough for the time and care you put onto your response.  It is just good to know that we are not alone and there is a community of people willing to share their knowledge.  I am so glad you gave my posts a new topic line so it is easily found. I was concerned I might forget where I posted originally.  Because there is so much great information And encouragement I forwarded this link to my daughter.  Sometimes I think the message is clearer taken directly from The source. And these are things they need to know firsthand  

As you might expect we were shocked and devastated by this diagnosis  however we are fighters and have hope for a better outcome.  I too believe that only God knows our days and statistics do not factor in the individual spirit.  With that being said I have already been working on  My homework and have started a list of possible centers for our second (or third) opPinion. The sites you provided have been wo useful and have expedited my research.  As you mentioned we don't have time to sit around feeling sorry for ourselves.  Also lots of prayer along the way

i wanted to tell you a little about our family.  I have two daughters, the youngest is 33 and it is her husband Trae who has been diagnosed.  They have been married less than 2 years.  My oldest daughter owns a restaurant in southwest Virginia and my younbest works with her.   So needless to say they are very close which is a good thing as we move through this treatment.  I retired here last year to help with the Grandchildren, my oldest has 3 so they keep me busy.   My husband spends his time writing and playing his guitar. And of course he helps with the grandchildren.  

i am about to get back into my research but wanted to touch base with you today.  I am sure we will have questions and comments that we will post later.  i will be sure to post updates but for now I have my work cut out for me.  

 

God Bless You

Pam

LorettaMarshall

Pam~I can see that U R a "Go-getter" kind of woman~that's good!

 Hello Pam,

 It's good that you passed along the info to the others.  And yes, it’s good to know where to post your next questions.  When several people “drop in to say hello” on a certain link, and then ask a question of their own, it is easy to forget where to find them “in the stack” of comments.  And another thing, if you should be reading a post, and think you would like to ask them a question regarding their comment, please check the date of “their post”.  I see some people answering “old posts” and the people often have even passed away.  I know because I’ve been observing things for quite some time now.  So a good way to tell if they are still actively posting or not, is to “click” on their “name” in the blue section.  Up will come their “about me” page, and you can see the time they first joined and the time they last viewed this site.  That will give you a good idea of whether or not you are going to receive an answer from them.  If it has been in the last few months, chances are they are still out there somewhere.  If it has been years, most likely they are no longer actively posting on this site.

  I know "exactly" that "LOST" feeling of not knowing initially which way to turn.  So first I had to learn how to spell ESOPHAGEAL.   And contrary to what some doctors say, "Stay away from the Internet", the things I have learned through research have given me total peace and confidence that "we're on top of the situation" and are on the right road.  I'm not one to "take detours" and read all the "kooky" sidebars that crop up while I'm looking for something specific.  By now I know the roads to take, since I've been on it for a while now.  And I can actually watch entire videos of surgical procedures without "feeling sick to my stomach."  But when I first started out, I would start to view especially the "OPEN" Ivor Lewis Esophagectomy.   I couldn't watch it for very long.  There were all those "tools, hands, blood, etc."  and I would say, "Ugghh I don't think I can watch this."  But I've gotten a stronger stomach now, and they give me a better understanding of what the written words mean. 

 Moreover, when I'm looking up something for the first time, I can always put "UPMC" on the end of my search, and then I know what UPMC is saying or doing about a certain thing.  Also I've found Mayo Clinic has a very "user friendly" site, more so than many others.  So when you're looking for something, put in the words you're wanting to know more about, and then type in "Mayo Clinic" on the end.  I find their explanations simplified and easily understood.  Mayo is one of the highest rated hospitals in the country.  So that's just a clue as where to look also.

 And as for grandchildren, I can tell by the age of your children that you're much younger than me.   You know we women go through what we call "the change OF life".  Well, some of us go through some tremendous "changes IN our lives" just when we think we've got it all together.  My husband and I found ourselves "surrogate" parents to a set of 4 grandchildren all from the same family.  As a matter of fact, initially he had ruled out going to UPMC because we had no one to "take care of "our children"".  Your daughters cannot know the love you have for your grandchildren.  Your love is just as great as the love you have for them, and no sacrifice of time and/or money is too great.  Although when you're in your 50's, you're not exactly thinking that eventual retirement will find you raising a second family.  Anyway, the Lord provided a great lady who stepped up to the plate and kept all four of our grandchildren during the summer of 2003, while we were away in Pittsburgh.  And now it seems like only yesterday that all this took place.  Time is flying by. And if for no other reason than these children needed us, the Lord has let my husband survive Esophageal Cancer for so long now. 

So I’m hoping that your son-in-law will also find and be given the very best care possible, and that’s where you are playing a vital role.  Your daughters are certainly busy running that restaurant and there are only so many hours in a day.  And one does have to “fit in sleep somewhere”, and your grandchildren live in a little world all their own, most likely oblivious to the turmoil in your lives.  There’s no need for them to know more at this time than that their “uncle” is very sick, and you’re finding some good doctors to help make him feel better.  It all depends on their ages, but they can’t be very old, so the less said about it the better at this point.  So you have a lot of lives to “juggle” in the process.  You’ve got to be calm around the children, even though you’re torn within.  We know that feeling too.  Our youngest grandson turned 8 the day after my husband had his surgery.  So that’s a delicate time in their lives. 

 My husband is now 79 and was 65 when first diagnosed, and I don't mind saying I'm 77.  Now we're both beginning to add the "and a half" back in because we're both grateful to still be here.  Remember when we were young, we were always wanting to be "older" than we were, so we'd always add “and a half" to whatever age we were.  Then as we reached our 30's we dropped the half.  Now we're going back down the other side of the hill so we're adding the "halves" back on.  So let's see in August, I'll be "77 and a half!" 

 You’re putting your own life’s desires on the back burner to make an "investment" in the lives of your grandchildren.  And even though it can be exhausting emotionally and physically at times, you wouldn’t be anywhere else at this time in your own life. 

 Now my grandchildren are sending me special cards especially on “Mother’s day” thanking me for taking of them in some delicate times in their life and recounting some pleasant memories.  Three live in our area, Tidewater, and one lives in Michigan.  Now I’m a great grandmother, but I’m not taking on a third set to raise.  So far the parents are doing just fine!

 Incidentally, send me a private message and tell me where your daughter’s restaurant is, and if I happen to be in that area, we’ll stop in and say hello.  But most of my travels are along the Route 57 and Route 58 area.  Occasionally, we go out in the Wytheville direction.  We love to browse in antique shops and did even before we became “antiques” ourselves!  But we’re happy to be in as good a shape as we are.    Here’s hoping and praying that your son-in-law will be given an extra “lease on life” and that he will be able to enjoy the love of all of ya’ll for a long time to come.  It’s not easy, but what in life is? 

 Prayerfully,

Loretta (William’s wife)

 

pamelaann5543

I feel like you are my friend already.

Hi Loretta,  my daughter and her husband are doimg their homework tonight.  They are using your research as a starting point and are now busy writing their questions.  They came over for a visit tonight and we had a long talk about being informed and asking lots of questions.  Also demanding the things they feel will benefit Trae and his treatment. My daughter is very strong and will be a great advocate for her husband. Your post inspired me to ensure they learn as much as possible about his condition and how it is treated.  My husband and I come up with several centers we felt would be good candidates for a second opinion.  We provided the sites and why we felt they were good fits.  All were major centers and three within driving distance from home.  I felt they need to complete the research and make the final decision.  AGain I used all of your links to research the centers.  

I also wanted to share that my son in law (his name is Trae) is very positive and feels he can fight this.  I know attitude is very important in battling this condition, it made me feel good.  Even though it has only been a week since this diagnosis we are shaking off thr shock and moving forward. I have Trae on several prayer list and that feels like a positive step for me. 

You and your husband sound like such lovely people and those grandchildren lucky to have you.  Rasing four is amazing, my three keep me very busy. Their ages are 12, 5 and 17 months.  I have quite a range.  The love we have for our families is unmatched. you are so right, no time, money,sacrifice is too great for them. 

You know I did not know how to spell esophageal until a week or so ago now I am talking about chemo, HER, J tubes. You never know what life will throw you. not sure I will be able to look at procedures but time will tell. Thanks for the tip on Mayo I am going to take a look later tonight. 

If you are in the Tidewater area you are not too far from us. Let me know how to private message you. It would be wonderful to meet you. I feel like you are already my friend. 

My daughter, her name is KRISSY wanted me to ask you about his eating.  They meet with a dietitian Tuesday but she specifically wanted me to ask you if you have any suggestions for him.  He has difficulty swallowing and needs to get 3,000 calories a day. He in drinking breakfast drinks, some soups, she tried smoothies but he doesn't like them. Did you husband have any problem swallowing? Did you have any special things you did? Any questions you can think of that are important she ask the dietitian?

thanks for the kind words, sometimes life throws us a really bad ball but we are up to the challenge. We are fighting right along with Trae. 

Dont forget to let me know how to private message you

Pam