"ttsqky"~Things your doctors should B telling U & all new patients about Esophageal Cancer @ any sta

Dear “TTSQKY”

Let me go back in time to November of 2002, when my husband went to the doctor with a persistent hiccup each time he started to eat.  He had no other symptoms.  A visit to a gastroenterologist for an upper endoscopy resulted in a myriad of emotions.  After we heard the word esophageal cancer, our first thought was, “Does this mean William is going to die?”  Shock, sorrow, sadness, heartbreak, confusion, a feeling of not knowing which way to turn, bewilderment, disappointment, and uncertainty but not disbelief.  We were NEVER in “denial”.

• ·         Which way to go?
• ·         What doctors know how to treat this? 
• ·         Are there survivors?  If so, we want to talk with them to know how they survived.
• ·         If we do survive, for how long? 
• ·         Does this mean we can live a little longer before we die?
• ·         Where are the doctors that know how to treat this cancer, if it can be treated?

            In a Nano second, our priorities were all rearranged, and things that were once thought important lost all significance in light of a predicament we could not control!  All the “stuff” we had managed to collect became just that—STUFF!  It is so true, “a man’s life consisteth not in the abundance of things which he possesseth!” 

And another word we threw around all the time as though we owned it—TOMORROW!  How many more tomorrows would we be blessed to have?  And what about all those “yesterdays” when we traveled through life, not always appreciating the simple things in life, like love of God, family, friends and even the country we are blessed to live in? We were getting along managing to stay afloat with all the normal problems that one encounters in life.  But WHOA—NOW things are in a spin and seemingly topsy-turvy—and indeed they were.

NOW—fast forward to TODAY.  No doubt this is where you find yourself!  And so, I would like to give you a short synopsis as of today—August 31, 2018.  You’ve already heard from 2 survivors and I would like to tell you the good news.  THERE ARE SURVIVORS and your dad may well be one! My husband is into his 16^th year of survival from the date of diagnosis. 

 Although brevity is not one of my strong suits, I will try to tell you in a few words our course of action.  Paul & Ed have given you good information, so I won’t duplicate their words—just agree with them.  I can tell you that we went to the top thoracic surgeon here in Tidewater back then.  However, no one in this area was trained to perform the latest laparoscopic procedure known as the Ivor Lewis Minimally Invasive Esophagectomy (MIE).  So although all our initial pre-op workup was done here at home, for a SECOND OPINION, we went to see Dr. James D. Luketich at the University of Pittsburgh Medical Center.  (UPMC)  He had recently pioneered the latest and least invasive esophagectomy procedure in the mid-90s, and few thoracic surgeons had upgraded their skills early on to include the very latest totally laparoscopic procedure.  The MIE is the surgery of choice, although sometimes it becomes necessary to revert to the OPEN (more invasive) procedure, but that will depend on individual circumstances and what health conditions each patient is dealing with.  The MIE provides a shorter hospital stay, less blood loss, less morbidity, quicker recovery time overall.  Now there is always a period of “readjustment to a new way of eating and sleeping” that all patients will adjust too.  This is a small price to pay for continuing to enjoy life after such a huge MAJOR surgery.  It doesn’t leave a patient “debilitated for life” as some newbies here have suggested.  But keep in mind, they haven’t had the surgery.  So take my advice and listen to what Paul has said.  Clinical trials have clearly shown that patients diagnosed with Esophageal Cancer fare best when they have the “tri-modal” treatment. 

Normally, this will include neoadjuvant (pre-op) treatments of chemotherapy and radiation, and then surgery.  In some cases it’s been found that during the surgery there was residual cancer in some of the lymph nodes removed for biopsy.  If and when surgery is performed, and nodes are biopsied, and some residual cancer is detected, then doctors advise post-op chemo treatment (adjuvant – after).  Once in a while I have read behind some patients that residual cancer was detected in the local lymph nodes near the Esophagus, and the surgeon or the oncologist did NOT recommend post-op chemo or radiation.  Dr. Luketich does not like to recommend post-op radiation after surgery (only more chemo) because of potential damage to the heart and excessive scar tissue buildup.  Incidentally, doctors usually advise surgery as soon as possible after the completion of pre-op treatments since a buildup of scar tissue results from radiation.  The longer one waits after the initial pre-op treatment before they have the operation, the more scar tissue has a chance to form, making surgery more difficult.

Okay, I see that I am now long past “brevity” but I feel all the things I’ve learned are things I want to share with you.  So I will just tell you that my husband had the same Stage III diagnosis as your dad, except there doesn’t appear to be lymph node involvement according to what you have provided here.  My husband’s diagnosis was Adenocarcinoma @ the Gastroesophageal junction.  (Commonly called GE junction).  His was Stage III but with lymph node involvement.  (T3N1M0). 

“T” stands for tumor—“N” stands for node—“M” stands for metastasis.  So interpreted my husband’s cancer had invaded all 4 walls of his Esophagus and spread to 2 of his lymph nodes—but the “M” was zero, meaning that the cancer was strictly confined to his Esophagus and had not spread to any other major organ.  In the case of Stage IIIs, surgery is possible (all circumstances considered of course).  It is Stage IV if the cancer has spread to another major organ, e.g., lungs or liver, bones, etc.

My husband had pre-op chemo treatments consisting of Carboplatin and 5-FU.  He had 25 radiation treatments.  (There was no “targeted radiation” treatment facilities here in Tidewater back in 2002.) His PET/CT scan after those treatments indicated complete success.  HOWEVER, we had already been told by the surgeon that to ensure complete the treatment process that SURGERY would be necessary.  So we never doubted their word.  My husband had 22 lymph nodes removed for biopsy during the surgery, none of which proved to have residual cancer, so no post-op (adjuvant) treatment was prescribed.

My husband was in and out of UPMC in 5 days.  There were “no leaks” in the anastomosis (place where organs are rejoined after removal of the cancerous Esophagus).  He came home with a “J” tube that had been placed below his waist line as part of the surgical process.   It is vital that the patient receive adequate nutrition in order to maintain strength for recovery.  This is placed in the second section of the small intestine known as the “Jejunum”.  From there the food is distributed throughout the entire system.  How long one keeps this tube in will depend on each patient’s need for nutritional support.

Now in view of what you have shared with Ed and Paul, I know that you have some doctors who are not explaining things to you there at some cancer center in Kansas.  This is tragic, so I would tell you what I would do, IF I WERE YOU, knowing what I would do.  Now I don’t know what kind of insurance you have and how well your Dad is able to travel.  But all things considered, if you have health insurance that allows for a SECOND OPINION—your Dad certainly needs one.  You say he is sicker and feels worse than when he first started treatment!

Meantime, he needs a “feeding tube” preferably a “J” tube.  Pegs that go directly into the stomach or stents are not as good as having a “J” tube.  This is done in the operating room.  You say that Dad can’t even swallow.  If he isn’t receiving “hydration” through an IV, he is going to be so weak, he can hardly walk.  No food or water and getting worse are all bad signs.  So below my name, I am going to give you some references that will better explain to you what your dad is facing.  It’s too bad that you are not being given any help from the doctors.  Would you happen to know the name of the chemotherapy your Dad is being given.  You tell us that he has now had his last treatment as of August 30, 2018.  Routinely about 3 weeks out from the last chemo treatment a PET/CT scan is given that will show the results of the completed treatment series.  This will be similar to the one you shared with us at the top of this letter.  Doctors should be able to tell you what the future holds as far as surgery after this report.  So the best thing for you to do is go over the references below.  Make a list of questions that you should ask your doctor.  All doctors have nurses and they should know the answers.  If they don’t they should ask the doctor, if the doctors act like they’re too busy to explain things to you.  This would be the best way that I could help you. 

So here’s praying that you will get some much needed help for your Dad.  In many cases, doctors will only answer questions if the patient asks them.  So the best thing a patient can do is to research his/her own cancer—then ask the questions—and expect answers that you can understand.  Included in my references are a list of the best hospitals that treat Esophageal Cancer.  Not just any old doc will do when your life is on the line. 

Prayers for you and Dad,

Loretta (Wife of William, a survivor now with no recurrence.   Thoracic Surgeon Dr. James D. Luketich performed the Ivor Lewis Minimally Invasive Surgery May 17, 2003.  

P.S.  These references below will have many sub headings.  Each time you place your cursor on one of those lines, it should bring up the entire subject for you.  “Control+Click” should get you there.

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Since Dad is being treated in Kansas, here are two references that should interest you.  The first one will be the best hospitals in Kansas.  See if you can find your hospital listed in this group.

1.      https://health.usnews.com/best-hospitals/area/ks

Secondly, you definitely need a SECOND OPINION based on your inability to communicate with the doctors currently “treating” your Dad.  So I will give you a reference link of top hospitals that have as one of their SPECIALTIES Esophageal Cancer.  Is there any way you can get to one of these?

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

[My personal note:  The category for gastric cancers is Gastroenterology and you will see separate rankings for hospitals depending on the type of cancer they are noted for treating.  For instance, MDAnderson is not the top hospital for all kinds of cancer.  Actually, the MAYO clinic in Rochester, MN ranks #1 for Gastrointestinal cancers and GI surgeries.   Moreover, MDA doesn’t even rank in the top 50 hospitals that treat Esophageal Cancer.  Most people just go with a name, rather than a specialty of that particular hospital.]  Actually HOUSTON METHODIST RANKS #1 for Esophageal Cancers in the state of TEXAS.  They rank #15 nationwide for Gastroenterology & GI surgeries.

So in fact here is the category for Gastrointestinal surgeries. 

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

Best Hospitals National Rankings

Review the 2018-2019 best hospitals in the U.S. from U.S. News. We analyze data from nearly 5,000 medical centers and survey responses from more than 30,000 physicians to rank hospitals in 16 adult specialties including cancer, diabetes, rheumatology and more. Survival rates, patient safety, specialized staff and hospital reputation were among the factors weighed. Nationally, only 158 hospitals ranked in at least one of the specialties in 2018-19. The Honor Roll recognizes 20 hospitals for their exceptional care for complex cases across these specialties, as well as recognizes hospitals by state, metro and regional areas for their work in nine more widely performed procedures and conditions.

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4.      https://hydratem8.co.uk/hydration/why-hydration-is-important-during-cancer-treatment/

[My personal note:  If Dad can’t swallow water, he must be severely hydrated.  This site explains the necessity of hydration during cancer treatment.  It also has a “color scale” to compare the color of one’s urine.  Then you can tell if you are dehydrated, and if so, how severely!  Don’t hesitate to ask for hydration.  I always say cancer patients should not have to beg for water!]

“WHY HYDRATION IS IMPORTANT DURING CANCER TREATMENT…”

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5.       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.

HOW TO ASK FOR A SECOND OPINION

It may seem a little awkward to ask your doctor for a referral to get a second opinion, but don’t worry – asking for a second opinion is pretty normal, U.S. News and World Report says, noting any doctor who is good at what they do will welcome a second opinion.

Here are some tips about seeking a second opinion:

– Don’t worry about asking for a second opinion for the minor things. Instead, seek a second opinion for serious or chronic issues, especially if you’re unsure about your doctor’s diagnosis or if the treatment for the issue is experimental or risky, U.S. News and World Report notes. But it’s important not to wait too long to get a second opinion, because you don’t want to delay treatment for too long, the Patient Advocate Foundation says.

– When asking for the second opinion, tell your doctor you just want to be fully informed about your diagnosis, prognosis and treatment, Compass Healthcare Solutions suggests. You can ask your doctor for a referral to see a specific doctor you have in mind, but WebMD says don’t see a doctor that is affiliated with your initial doctor – they probably won’t contradict them.

– Before you go see the new doctor, make sure you get a copy of your medical records and test results, the Patient Advocate Foundation says. Sometimes tests can be wrong, though so WebMD says you can ask for a second medical opinion and for the lab or pathologist to do the tests again.

– When you go in for your second opinion, remember you’re looking to confirm your current diagnosis – the second opinion isn’t always right, U.S. News and World Report says. Doctors may differ on your diagnosis or a treatment plan, and ultimately it’s your choice to decide what’s best for you, the Patient Advocate Foundation says.

For more information on when and how to get a second opinion, click here."

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6.      https://www.cancer.gov/about-cancer/treatment/types/radiation-therapy

“Radiation Therapy to Treat Cancer

Credit: National Cancer Institute

Radiation therapy (also called radiotherapy) is a cancer treatment that uses high doses of radiation to kill cancer cells and shrink tumors. At low doses, radiation is used in x-rays to see inside your body, as with x-rays of your teeth or broken bones.

On This Page

• How Radiation Therapy Works Against Cancer
• Types of Radiation Therapy
• Why People with Cancer Receive Radiation Therapy
• Types of Cancer that Are Treated with Radiation Therapy
• How Radiation Is Used with Other Cancer Treatments
• Lifetime Dose Limits
• Radiation Therapy Can Cause Side Effects
• How Much Radiation Therapy Costs
• Special Diet Needs
• Working During Radiation Therapy…”

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

Newly Diagnosed

A new diagnosis of cancer can be a shock, making you feel out of control and overwhelmed. Getting informed can help alleviate these feelings. Remember, very few cancers require emergency treatment; you have time to learn about your diagnosis and treatment options, ask questions, and get a second opinion. This section is designed to help you address your initial questions before you move forward with your treatment.

Newly Diagnosed Topics

• What is Cancer?
• Diagnosing Cancer
• Introduction to Cancer Treatment
• Your Cancer Treatment Team
• Your Support Team
• Optimizing Your Treatment
• Questions to Ask
• A Word about Clinical Trials
• Getting a Second Opinion
• Who Should Get a Second Opinion?
• Managing a Rare Cancer
• The Role of Caregivers

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

Management of Esophageal Cancer

• Overview
• Symptoms & Signs
• Diagnosis & Tests
• Stage 0
• Stage I
• Stage II
• Stage III
• Stage IV
• Barrett's Esophagus
• Recurrent
• Surgery
• Radiation Therapy

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9.      http://www.chemocare.com/about/default.aspx

This site will provide you with information about the drugs your Dad is taking, or just finished taking, along with possible side effects and helpful solutions.

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10.  https://www.cancer.gov/publications/dictionaries/cancer-terms/search?contains=false&q=esophageal

This is a National Cancer Institute publication.  Any word you want to look up relative to cancer terms can be found here, plus when you place your cursor on the “audio” symbol, the word will be repeated for you.  All the “big words” that doctors use every day are not part of our vocabulary until we’ve been diagnosed with cancer.  Then it’s our business to know more about them.  I find this to be a really helpful site.

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11.  https://www.youtube.com/watch?v=XWoHVSDuyh4

This is a 5-minute video showing surgical procedure for “J” tube placement. 

Laparoscopic jejunostomy tube placement - UCSF Quan-Yang Duh, MD

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12.  https://www.youtube.com/watch?v=jjPP4zENP9g

This is a 15-min. video on how to use the “J” tube.  Actually one can hook this feeding tube up at night, and sleep with it through the night.  This frees you up to be more active during the day.

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13.  https://stanfordhealthcare.org/medical-treatments/e/esophagectomy/types.html

“Types of Esophagectomies - Overview

Types

• Ivor Lewis esophagectomy
• Minimally invasive esophagectomy
• Three incision esophagectomy
• Transhiatal esophagectomy

Conditions Treated

Types of Esophagectomies

• Ivor Lewis esophagectomy
• Minimally invasive esophagectomy
• Three incision esophagectomy
• Transhiatal esophagectomy

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14.  https://www.neulasta.com/onpro/?gclid=CjwKCAjwzqPcBRAnEiwAzKRgS6Di7Bu7V1pA-Imsnv7F5kFofItVsEH0bUqPd0unVtE_tyNbD6ekohoCBrkQAvD_BwE&gclsrc=aw.ds&dclid=CKuJ4fHqmN0CFY1IDAodfWkCFg

https://www.neulasta.com/support/#glossary

[This is a 6-minute video relative to Neulasta.  This drug can increase the white blood cell count.  White blood cells help fight infection.  Neulasta can reduce the incidence of infections while one is taking chemotherapy.]

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 15.    https://www.cancer.org/cancer/esophagus-cancer/treating.html

 [This article is so inclusive that each topic will have to be read to get a full understanding of the subject. 

“Treating Esophagus Cancer

If you’ve been diagnosed with esophageal cancer, your cancer care team will discuss your treatment options with you. It’s important that you think carefully about each of your choices. You will want to weigh the benefits of each treatment option against the possible risks and side effects…”

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 [My note:  Regarding HER2positive --  This is a clinical trial that is now closed and we hope we will soon get the results of this particular trial.  Heretofore, if I understand correctly, it seems that protocol was only to test patients when they were diagnosed as Stage IV.  Now it seemed to me that it should be a part of the regular testing process initially.  So in the past it seems that the only patients that oncologists were prescribing Trastuzumab (Herceptin) for was Stage IV patients.  But I always questioned who is to say that the patient might have actually had the oncogene that is overactive from the very start, and that if they had received the Herceptin along with the other chemo combo and radiation initially, it might not have ever advanced to Stage IV.  So if I understand this clinical trial, it is to see if including HER2+ testing initially would be able to detect the presence of this overactive gene from the start.  Herceptin is not a chemo drug, but is given in addition to the chemo drugs.  And I know that “DeathorGlory” (ED) attributes his long survival to the addition of his treatments.  Initially he was able to have an Esophagectomy, but then had a recurrence.  At the time of the recurrence the FDA had just approved Herceptin for Esophageal Cancer patients.  That was back in 2011.  Initially, it was thought that only Breast Cancer patients possessed this over-expressive oncogene which caused the cancer to spread much more rapidly.  In due time, it was also found that EC patients were also experiencing the same over-active or over-expressed oncogene, so it then it began to be prescribed for EC patients who tested positive as well.  Now I hope that all patients will be having the tests from the very beginning to ascertain if they possess this overactive gene.  It would seem to me that some the early one is tested—the better.  Then again I am not a doctor, but I do know all the tests are singing the praises of this additional therapy Herceptin.  Human Epidermal Growth Factor Receptor 2is one of a family of several receptor proteins.  If a patient tests positive for this oncogene, it means that the oncogene makes more copies of the gene than it should, thus it makes more protein, which in turn causes the cells to divide more rapidly.  This is how I understand it.]------

 16. https://www.cancer.gov/types/esophageal/research/trastuzumab

 “ADDING TARGETED THERAPY TO TREATMENT FOR ESOPHAGEAL CANCER

 Name of the Trial

 Phase III Randomized Study of Radiotherapy, Paclitaxel, and Carboplatin with versus without Trastuzumab in Patients with HER2-Overexpressing Esophageal Adenocarcinoma (RTOG-1010). See the protocol summary.

Principal Investigator = Dr. Howard Safran, Radiation Therapy Oncology Group

 WHY THIS TRIAL IS IMPORTANT

 Esophageal cancer that is confined to the esophagus and nearby lymph nodes (locally advanced disease) is often treated with a combination of chemotherapy, radiation therapy, and surgery (called trimodality therapy). Although trimodality therapy sometimes cures the disease, relapses are common, and many patients ultimately die from their disease. New strategies are needed to help prevent recurrences in patients with locally advanced esophageal cancer.

Samples of tumor tissue removed during biopsy or surgery indicate that about 20 percent to 30 percent of esophageal cancers express a growth factor receptor protein called HER2 (that is, the tumors are HER2 positive). Treatment with trastuzumab (Herceptin), a drug that targets HER2, improves the survival of women with HER2-positive metastatic breast cancer, and the drug markedly decreases cancer recurrence and improves the survival of women with earlier-stage HER2-expressing breast tumors. Doctors hope that trastuzumab may likewise reduce disease recurrence and improve the survival of people with HER2-positive esophageal cancer…

They now want to see if adding trastuzumab to potentially curative therapy will help patients avoid disease recurrence and death.

 In this phase III clinical trial, people with confirmed HER2-positive locally advanced adenocarcinoma of the esophagus will be randomly assigned to receive preoperative radiation therapy and chemotherapy, with or without trastuzumab. Following surgery, patients assigned to the trastuzumab arm of the study will receive maintenance therapy with trastuzumab for 1 year. The study is designed to determine whether the addition of trastuzumab improves disease-free survival and overall survival…

 “In [HER2-positive] breast cancer, trastuzumab reduces recurrence by about 50 percent. So one would hope that, in patients with esophageal cancer, it will have that same reduction in recurrence…”

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17.   https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCT01196390&r=1

“Radiation Therapy, Paclitaxel, and Carboplatin with or without Trastuzumab in Treating Patients with Esophageal Cancer

 Status: Closed to Accrual and Intervention

 Description

 This randomized phase III trial studies how well radiation therapy, paclitaxel, and carboplatin with or without trastuzumab work in treating patients with esophageal cancer. Radiation therapy uses high-energy x-rays to kill tumor cells. Drugs used in chemotherapy, such as paclitaxel and carboplatin, work in different ways to stop the growth of tumor cells, either by killing the cells, by stopping them from dividing, or by stopping them from spreading. Monoclonal antibodies, such as trastuzumab, may interfere with the ability of tumor cells to grow and spread. It is not yet known whether giving radiation therapy and combination chemotherapy together with or without trastuzumab is more effective in treating esophageal cancer…

“A clinical trial is a study that tests the safety and how well a new treatment works compared with a standard treatment. For example, phase III clinical trials may compare which group of patients has better survival rates or fewer side effects. In most cases, treatments move into phase III trials only after they meet the goals of phase I and II trials. Phase III clinical trials may include hundreds of people…”

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18.https://www.youtube.com/watch?v=pCXiRE-4HzU

[My note:  This is a simplified explanation of what it means to be HER2 positive.  It is 5:40 min. video that helps you to understand.  Just remember that the same info the doctor is talking about here is now applicable to Esophageal Cancer as well. 

“WHAT DOES HER2 POSITIVE MEAN

 Lisa Schwartz, MD - Published on May 23, 2017

  There are three very basic tests that will be run on your breast cancer tissue. The first two are ER and PR and these determine whether or not your tumor is hormone responsive. The next is Her2 and it will determine a very important part of your breast cancer treatment. Watch this quick video to get the whole scoop.”

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