Tracii~Re EC Stage IV - USNewsHealth ranks BEST hospitals 4 treating Esophageal Cancer

Dear Tracii ~

These remarks are an extension of the conversation you are carrying on with Ed (DeathorGlory) and Paul61 on the EC forum here.  You wrote about your father’s diagnosis of Esophageal Cancer, Stage IV at this link https://csn.cancer.org/node/312833  dated November 6, 2017.  Since you were short with your remarks, but totally shocked to learn of your dad’s diagnosis of Stage IV Esophageal Cancer, I am certain that you will have to do a lot of research for yourself.  Obviously these doctors? are not providing you with enough information.  And so, I’ve included several reputable sources of information you will find helpful.  No, I do not expect you to absorb all of this in one setting, but it should be used as reference material.  There are so many more I could give you, but these will provided basic insight into how different stages of Esophageal Cancer are diagnosed and treated.  All my remarks are from a personal point of view.  Once you know more about EC, you will be able to ask questions that the doctors should readily answer for you.  So grab a chair, and read on.

Although you have addressed “Ed”, you know we ladies always have to have our say as well.  Since I am a Stage IV Ovarian cancer patient myself, I can identify with what it feels like to “live on Death Row.”  Pardon the expression, but I’m a realist and know how it feels to have “late” stage (terminal) Ovarian cancer as the initial diagnosis.  I say that to say this, although my doctors knew I was terminal from the start, they did NOT say, “Do not pass Go—Go straight to Jail—you’re done for! ” 

Frankly, even if their prognosis proves to be correct, that is no excuse to dilly-dally around and delay palliative treatments.  Only God knows exactly what day I will die.  So let’s begin by saying that many Stage IV EC patients “outlive” their doctor’s expectations.  Admittedly, even though survival times are not as good as we would wish for Stage IV patients, that is no excuse for not acting aggressively if that is the patient’s wishes.  To me, the “wait time” could also be “wasted time” from the standpoint of starting proper treatments.  Proper treatments should definitely include prescribing Herceptin since you say your dad’s tested positive for HER2.  If I were you, I would press for that.  But I don’t feel like the FDA would have approved it for Esophageal Cancer patients had it not been shown to be effective for many of the patients who received it.

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Why did your dad’s doctors even administer the test if they did not intend to follow the prescribed treatment for HER2+ patients?  If Herceptin doesn’t work, why did the FDA approve it for Esophageal Cancer patients? 

1.      https://www.gene.com/media/press-releases/13007/2010-10-20/fda-approves-herceptin-for-her2-positive

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Much like Ed, I’ve been fighting the good fight with the help of the Lord.  God alone knows the number of our days, but it seems that your Dad’s doctors have a calendar that only has “weeks” on it.  It does not appear that they are in any hurry to get Dad into some active palliative treatment.  My current calendar has only one more month after November in the year 2017, but wait a minute, I already have a calendar for 2018 that has 12 whole new months in it.  Seems they aren’t entertaining the idea of long-term treatments!  Hhhmmm…..

Sometimes newbies to Esophageal Cancer, which my husband and I were at one time, are all of a sudden “lost” and don’t know which way to turn.  Then we are introduced to a medical doctor or a medical group which supposedly has a good track record of caring for their patients. 

Judging from treatments that I know other Stage IV EC patients have had, it seems obvious that the medical team, whomever they are, are not being aggressive. (Now please remember I’m stating my own personal opinion, and cannot “prescribe treatments” but doctors do differ.   Some are aggressive while others seem to take a “wait & see” attitude. 

Many oncologists would have had a “J” tube put in right away.  This is a feeding tube that is surgically placed  in the second section of the small intestine known as the Jejunum.  This is preferable over a stent for optimum nutritional needs.  For many who have posted here through the years, a stent was rarely the answer for their problems with swallowing.  There are several types of stents, but stents can become imbedded with the tumor itself and cannot be removed.  At other times, if radiation is administered, the tumor inside the Esophagus can shrink, thus causing the stent to drop down into the stomach.  If that happens, the stent has to be removed surgically.  Most of the people’s experiences on this site have not been favorable when it comes to dealing with stents.  I’ve now been observing this site for 15 years!  My husband is now into his 15^th year of survival from Esophageal Cancer Stage III (Adenocarcinoma @ the Gastroesophageal Junction (GE) (T3N1M0).  We’ve read countless entries since 2002 and have made many friends during that period of time.  “We’ve wept with those that wept and rejoiced with those that rejoiced.”

Personally, if this were my father, I would be very upset at the lack of aggressiveness on the part of this group of doctors.  Waiting 10 days to check out his heart—what’s up with that?  And then to say Herceptin does no good!  All patients should be tested for this over-expressive oncogene and clinical tests have PROVEN that it has great potential for “deactivating” if you will, this over-active process.  It absolutely does help!  But then again, remember I am commenting as an observer, not as a medical person.  Ed can attest to its effectiveness.

May I ask if you have had a second opinion?  While it is true that some people are so far advanced when their cancer is detected that many do not survive for very long.  Yet there are others who have aggressive palliative treatments in the way of both chemotherapy and radiation and live for several years.  I just had a friend to die from Stage IV EC, who had lived for 5 years.

Did you know that there are different rankings for hospitals according to their specialties?  Esophageal Cancer patients should seek an opinion from one of the highly-ranked hospitals where one of their specialties is ESOPHAGEAL CANCER.  Not all hospitals are equally qualified to treat EC.  There are plenty of hospitals who treat “cancer patients”, but not all of them excel in the treatment of GASTROINTESTINAL CANCERS.  Esophageal Cancer comes under the auspices of Gastroenterology and GI surgeries.  So please check out this link to find the very top-ranked hospitals that treat Esophageal Cancer.  Many will be surprised to know that MDAnderson in Houston is NOT the best hospital for treating Esophageal Cancer.  So check out the listings of which hospitals are BEST at what diseases and cancers.  That link is here:

2.      https://health.usnews.com/best-hospitals

“U.S. News Hospitals Rankings and Ratings

The U.S. News Best Hospitals analysis reviews hospitals' performance in clinical specialties, procedures and conditions. Scores are based on several factors, including survival, patient safety, nurse staffing and more. Hospitals are ranked nationally in specialties from cancer to urology and rated in common procedures and conditions, such as heart bypass surgery, hip and knee replacement and COPD. Hospitals are also ranked regionally within states and major metro areas. The Honor Roll recognizes 20 hospitals with outstanding performance across multiple areas of care…”

 3.      https://health.usnews.com/best-hospitals/rankings/gastroenterology-and-gi-surgery

 Now I don’t know if your dad has other medical problems that make him less likely to be a candidate for chemotherapy or not, but the doctors are certainly “taking their time” in their decision-making process!  May I say it’s upsetting, to say the least, when I read a letter like yours and I’m truly sorry that you have been given nothing but the worst of news thus far?   Ed is a “poster boy” for Stage IV EC.  I know he monitors this forum on a regular basis, and is a beacon of hope and a source of encouragement for Stage IV EC patients.  He has certainly been through it all.  He obviously has a group of caring and attentive doctors who are helping at every turn to allow him some quality of life.

Your anxiety regarding the doctor’s decisions, and your sudden shock at having your father being diagnosed with an advanced Stage of Cancer which is inoperable, is an absolute heartache.  Believe me, we who have been dealing become upset when we read about total strangers who are presenting with this cancer.  And you have already waited long enough for more hope than you’ve been given by this “medical group?”  Eight days have passed since your first post and it would appear that the doctors have “ruled out” more than they’ve “ruled in!”  Aggressive—not hardly in my opinion. 

Knowing what I know NOW, I would have wanted a medi-port put in as soon as I learned that chemotherapy could be given, even though surgery had been ruled out. 

Secondly, I would have asked for a medi-port to be placed, so the chemo could have been given through the port and not have to sit there for hours with a needle “stuck in your arm.”  Veins wear out—I suppose you know that.  Even if you didn’t, the docs do!

Like so many patients, you may not be near a major medical facility that has at one of its specialties the treatment of Esophageal Cancer.  You may be in a “one-horse” town where the doc is “jack of all trades/diseases!”  Oh my, I hope not. 

So the most I can suggest is that you learn all you can as quickly as you can about the cancer known as Esophageal Cancer.  Know the possibilities for treatment, and that will depend on the stage.  But in this instance, we “think” we know the stage!  Can you be certain that the medical team has conducted all the tests that should be administered?  Sometimes the cancer diagnosis is “above some doctors’ paygrades” and they need to admit that.  So since I’m not sure where you are so soon in this process, I will give you a few informative links that will enlighten you as to the usual modus operandi for EC patients.  For example, have the doctors conducted a PET/CT scan?  A PET scan shows live cancer activity.  To what organs has your dad’s cancer already spread?  What chemotherapy agents have been suggested in the event Dad’s heart will “withstand” the rigors of chemotherapy? 

Among the things I will send are a couple of letters from a dear friend, Sherri, whose husband was diagnosed as Stage IV at the young age of 48.  He was an avid runner, and ate all the right foods, and without any warning came to be diagnosed with Stage IV.  He lived 2 years and had a good quality of life (all things considered) because Sherri was so devoted to taking care of his every need.  She no longer posts here, but I have many of her letters on file, and have her permission to share any part of them with whomever I think might be encouraged by them. 

Anytime you check in here, if we can be of help, we will do our best to “bring you up to speed” on what Esophageal Cancer entails.  My wish would be that there might be one doc in the group that would treat your father as if it were their own father.  Then there would be no “foot dragging”.  While I have high regard for doctors because I’ve had the pleasure of having some of them take care of my husband and me, seems now and then you meet up with some who could stand a good swift kick in the you know what!  Sorry but from a layman's perspective, I’m not so impressed with the treatment plan or the speed your dad has been given so far. 

Wishing for you more help from your dad’s medical team than I’m reading about up until now.  I think a SECOND opinion is in order NOW.

Loretta Marshall (William’s EC DX was in Nov. 2002 – pre-op chemo/radiation then MIE surgery by Dr. James D. Luketich @ University of Pittsburgh Med. Ctr. On May 17, 2003)

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4.          http://www.gomn.com/news/mayo-clinic-says-get-a-second-opinion-first-ones-are-frequently-wrong/

“MAYO CLINIC SAYS GET A SECOND OPINION – FIRST ONES ARE FREQUENTLY WRONG…(By Melissa Turtinen - April 4, 2017 12:17 pm)

The Mayo Clinic in Rochester did a study (published in a medical journal Tuesday) and found as many as 88 percent of patients who came to the clinic for a second opinion for a complex condition left with a new or more refined diagnosis, a news release says.

The Mayo Clinic says a different or more detailed diagnosis can change someone’s care plan “and potentially their lives.”

The study looked at 286 patients who were referred from primary care providers to Mayo Clinic’s General Internal Medicine Division in Rochester between Jan. 1, 2009, and Dec. 31, 2010. Here’s how the types of diagnostic errors breaks down:

       Only 12 percent of patients left the Mayo Clinic with the same diagnosis.

       In 21 percent of cases, the diagnosis was changed completely.

       In 66 percent of patients, their diagnosis was refined or redefined.

“Effective and efficient treatment depends on the right diagnosis,” Dr.  James Naessens said in the release. “Knowing that more than 1 out of every 5 referral patients may be completely [and] incorrectly diagnosed is troubling – not only because of the safety risks for these patients prior to correct diagnosis, but also because of the patients we assume are not being referred at all.”

A lot of people don’t consider getting a second opinion because they either don’t know that’s something you can do, or because it can be expensive for people to see another doctor who may not be in their health insurance’s network, the Mayo Clinic says.

“Total diagnostic costs for cases resulting in a different final diagnosis were significantly higher than those for confirmed or refined diagnoses, but the alternative could be deadly,” Naessens said.”

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5.      http://news.cancerconnect.com/interim-pet-scans-may-improve-treatment-for-esophageal-cancer/

“…A CT scan uses X-rays to create a three-dimensional picture of the inside of the body. It shows anything abnormal, including tumors. A CT scan shows detailed pictures of tissues and organs inside the body. A PET scan shows abnormal activity from the cancer. So, the two scans together provide more information about the cancer.  PET scans are routinely used to guide therapy decisions in lymphoma but are only now beginning to be explored for this purpose in other cancers.

In the current study doctors administered chemotherapy before chemoradiation and used PET scans after the initial chemotherapy to assess response to treatment in order to see if the early PET scan can help doctors make quick course corrections to maximize patient benefit from chemotherapy…”

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6.      http://news.cancerconnect.com/new-standard-care-treatment-resectable-gastric-cancer/

[My note:  Even though this article is related to patients who are surgical candidates, it seems like this would be a good combo for your dad as well.  But remember, I’m not a doctor, I just always print out things like this report and show it to my oncologist and ask his opinion.]

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

8.      http://news.cancerconnect.com/cancer/newly-diagnosed/

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9.       https://www.cancer.net/cancer-types/esophageal-cancer/diagnosis

“Esophageal Cancer: Diagnosis

 Approved by the Cancer.Net Editorial Board, 12/2016

 ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. To see other pages, use the menu.

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn if cancer has spread to another part of the body from where it started. If this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know whether an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

This list describes options for diagnosing this type of cancer, and not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:…”

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10.   [My note:  These are two letters that my friend Sherri wrote.  Her husband was diagnosed Stage IV from the very beginning.]

 "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 '09, I have read many stories where 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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11.   [My friend Sherri's post] - What every Stage IVb patient needs to know

July 12, 2011 - 4:55pm

"Unfortunately stage IV's sometimes have limited resources at diagnosis. We are quite shell shocked at the news that we are hearing. We aren't equipped at that time to have gained the knowledge or the insight on the "Best Game Plan." Unfortunately, things need to happen and the need is NOW, immediately!

Most stage IV's already present with swallowing difficulties and weight loss. To have the best fighting chance, one cannot muster the strength without the proper nutrition.  Without the means to eat, a spiraling, downward effect will occur, dehydration.  You can ask any stage IV patient's caregiver here on what the downward trend in decline in health is.

 Weight loss, dehydration, not wanting to eat, no appetite. When one is already dehydrated, then there will be no "wants to eat." They are struggling to get in anything under an already-reduced stomach. If by chance they can get in some food, then they will have no room for liquids. If they take in liquids, they will already have become full and will not want to eat.

Many wait on the J-tube saying, “If I need it, then I'll get it later.”  But sometimes, later, they are already too weak to receive it and the damage has already been done. When Jim was diagnosed. He had already lost about 30 lbs. I insisted on that tube and with an esophageal stretch, he was then able to eat by mouth and by tube, taking in at least 6000 calories per day. He went from 172 to 198 lbs. in just under a couple of months.

The J-tube can also be used to ensure hydration, leaving the caregiver at peace knowing that their loved one is getting the proper balance of both nutrition and fluids.  In fact, medications can be crushed or ordered in liquids to be given in the enteral feeding bags.

 It is my opinion that stents should not be used unless it is a last resort for eating by mouth, but with that being said, I still would have a tube placed simultaneously. Just remember that at any given time, to ask for that esophageal stretch! The J-tube can be pulled out at any time.

Many stage IV's will hear at diagnosis that they are not radiation candidates. Remember that at stage IV, you will be treated palliatively. But you're in pain, radiation can then be used to reduce the pain. This is "Palliative" care.

Remember there are many tricks out there for gaining weight.  I, for one, do not recommend going the "Sugar" approach. Empty calories that fill you up in a short time but satisfies the hunger without really wanting to eat more. Eat good healthy foods, enriched with Whey protein.

One can make soups, blenderize them and add Half and Half, and Whey to it. Lentils, cream of anything soups are great too. Carnation Instant Breakfast shakes, with added yogurt, fresh or frozen fruits, ice cream whey, etc...I even made pancakes with cream and I believe that the calories were almost double. Get a juicer and a pressure cooker. They worked wonders for me. And of course don't forget that magic bullet. Hydrate with sugar free popsicles and fudgesicles! Wanting to go out to eat, Panera was a great place for us. I would ask them to put in more cream or water for Jim's soups.

As you approach chemo. Yes, weight loss will probably occur. So you need to always stay one step ahead of the game. Take care of business before you start.

Imodium, stool softeners, anti-nausea (Emend or Zofran) meds, magic mouthwash or melt tabs for taking on the dreaded thrush. Keep a journal on the reactions experienced after the first dosage of chemo.

We were able to pinpoint that on the Wednesday after chemo, Jim would get nauseous, diarrhea and vomit. We knew he would start the dehydration process. So on Tuesday, the next week, we started him up on anti-diarrhea meds, Zofran and IV hydration. In fact, we ordered the hydration for in-home use and I was able to set him up with it here for the duration. It worked wonders.

 Jim throughout his journey with EC cancer never had to be hospitalized once. His blood numbers were always up, never needed any blood nor Neulasta shots. This was all due to proper hydration.

As for supplements. We were given the go ahead to try everything and the kitchen sink.

The one supplement that I feel is essential in a HIGH GRADE FISH OIL. I gave this to Jim three times per day. If they can't swallow, then pop the pill and add it to the J-tube or soup. It helps with Cachexia, cancer induced weight loss!

Just recently I spoke with a woman at our local grocer whose husband had throat cancer. She stated he was given the all clear with the cancer but he was dying of weight loss. No appetite! So I told her about the fish oil and she said she would try. Three months later, she saw me in the store and came over to hug me. Her husband had gained almost 24 pounds and she knew it was the fish oil.

 Our hospital dietician told me to give it to Jim and I do credit this with Jim's ability to maintain weight. It is also great for the circulation system, skin and heart as well. Recently, I was told by my vet to give it to our three year old lab for eczema and allergies.

Don't forget that EXERCISE is very important. Just because you are diagnosed with stage IV, it doesn't mean to curl up in a bed or sit in a chair. Move, walk and exercise. Each day Jim and I would walk 3 miles. He would swim and when he no longer could do that due to bone mets, I bought him hand grips, hand weights and leg weights. An exercised body gets hungry!

As Jim’s cancer progressed, he never stopped the routines. By Jim's last days, he had metastasis to the choroid part of the eye, collar bone, multiple lymph nodes, three ribs, peritoneal cavity, celiac, esophagus, bones and we believe brain.  He said he was feeling great!

Hope this helps and remember that this is my opinion only. I am not a medical doctor, just an experienced Stage IV caregiver. Good Luck and may God Bless.

Sherri"

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