So frightened

Hello Sheri,

Hopefully the minimal symptoms do mean an earlier stage case, like you are hoping.  I've posted this a million times, but I'll do it again for you guys.  The single most important thing you can do is go to a 1st quality cancer center for treatment.  Duke is high quality and certainly worth the drive,  EC is not a sprained ankle that can be equally treated at your local hospital down the street, no matter how "convienient" it is,  EC requires folks who deal with it specifically for a living.  

I would also question the hospital's reticence to do a MIE surgery.  A high quality surgeon can likely do it successfully.  Find that surgeon.  I don't know for sure, but Duke probably has one.

Best wishes,

Ed

Hi Sheri

So far you've not been given any specific information on which the hospital could make such statements such as you describe.  You write:  "So far, we have only been to see the oncologist at the hospital where she had the endoscopy, who told her that she would not be a candidate for minimally invasive surgery because the cancer is located at the juncture between her stomach and esophagus.  I am not sure that is true and am worried that their hospital just doesn’t have surgeons skilled in that procedure.  Also, because the oncologist is not a surgeon, I am not sure that she would even know what type of surgery is possible."  

That statement is totally FALSE.  My husband's diagnosis was "Adenocarcinoma at the GastroEsophageal Junction" aka "GE" junction!  That is precisely the location of my husband's cancer--where the stomach and the esophagus join together. 

You should be encouraged to know that he was a Stage III Esophageal Cancer patient who had the Ivor Lewis Minimally Invasive Esophagectomy at the University of Pittsburgh Medical Center on May 17, 2003.  He is still alive today and it is now 2018 and he has had no recurrence.  Now how's that for some encouragement.  If I were you I would waste no more time at this facility.  Obviously, they are not one of the hospitals that has as a specialty, Esophageal Cancer.   The MIE is totally laparoscopic and is the surgery of choice today.  Many surgeons simply have not updated their skills and are not capable of performing this surgery.  But there are plenty of qualified Thoracic Surgeons who are well trained.  If you would care to tell us the name of the hospital, we can do more research on THEM, and may even prevent another patient from being given the same WRONG information, right out of the gate without even thoroughly testing the patient!  

I do not have the time tonight to go into detail, as I usually do, but believe me, your mom needs to "move on", but not before you know a bit more about which hospitals are the very best for treating Esophageal Cancer patients.  Just because the hospital treats "cancer" does NOT mean that one hospital can treat all.  And judging by this one statement that was incorrect, I would not waste any more precious time with them.  I would be hesitant to trust the results of any test that they would conduct.  

Lastly, I'm just plain "mad" to know that you have been told something that simply is not true.  Now if it is Stage IV, there won't be any surgery, but if it is Stage III or less, surgery is a possibility.  But all that comes after a thorough testing.  So look for a letter from me hopefully tomorrow.  This is not where you want your mom to be.

Incidentally, it may not be classified as "early" just because it was "silent" so hold off on "self-diagnosing" at this time.  Mom needs to move on.  No distance is too far to get the best treatment.  "Convenient or close to home" should NEVER be the criteria for this kind of cancer.  We can help.  You can read more info from those of us on our "about me" page.  Simply click on the name, and up will come up additional information which isn't always written on all replies that we make.

Just sign me "upset" with your mom's doctors???

Loretta Marshall

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Sheri,

Like everyone else here I am shocked at the misinformation your mother has been given. Perhaps she misunderstood the gastroenterologist’s statements; because laparoscopic minimally invasive surgery is definitely possible if the tumor is located at the gastroesophageal junction.

This is the way your mother’s conversation with the gastroenterologist should have gone:

 “Ms. (your Mom) although our visual examination during your esophagogastroduodenoscopy did not show any indication of abnormal tissue activity, we took precautionary tissue samples from your esophagus in the form of biopsies. I am sorry to tell you that the pathology results of those biopsies indicate the presence of cellular inflammation and mutation called Barret’s esophagus, and a cancerous malignancy in the form of (adenocarcinoma or squamous cell carcinoma) Given the location of your mother’s tumor, at the GEJ, it is most likely adenocarcinoma”

“Over the next two weeks we will be scheduling you for a series of tests. You will have an imaging test called a Positron Emission Tomography – Computed Tomography (PET/CT) scan. This test will help us see if the cancer has spread anywhere else in your body. You will also be receiving a endoscopic ultrasound (EUS). This test will help us determine how far into the four layers of your esophagus the cancerous cells have penetrated. Once these questions have been answered we will be able to “Stage” your cancer. Staging is used to indicate the type of cancer that is found, the size of the cancer growth, and how much the cancer has spread in your body. Based on these factors we will define a treatment plan to address the cancer.”

“We will also be referring you to a clinical oncologist who will use the staging information obtained from our tests to define a treatment plan specific to you. That plan may include chemotherapy, radiation therapy, and/or surgery; based on the results of your staging. If surgery is appropriate your oncologist will refer you to a surgeon to explore your surgical options.”

If this is not the conversation that occurred then you need to change hospitals. Esophageal Cancer is a relatively rare cancer not well understood by the general medical community. Your Mom’s best chance for a good outcome is to travel to an esophageal cancer center of excellence near you. Based on your location we can certainly recommend a center based on our experience here. Duke has an excellent reputation.

To answer your questions specifically about “what constitutes a good candidate for a minimally invasive esophagectory”  

 That would be a person in good general health that did not have any significant cardiac, respiratory, or hormonal issues and that did not have any previous surgery in the general area of the tumor location that could have generated excessive scar tissue. It would also be problematic if the tumor were located close to or attached to a major artery or the trachea. I can tell you that you will find many people here who have had minimally invasive surgery with their tumor located at the gastroesophageal junction.

From a personal perspective I can tell you I had a traditional Ivor Lewis “open” surgery for my esophagectomy and if your mother can have a minimally invasive procedure that is the best approach.

I am sorry your Mom seems to have been given such poor medical advice. I encourage you to attend future medical appointments with her if possible. I can also tell you from personal experience that once the person in front of you says “you have cancer” your brain freezes on those words and everything else after that is sort of a jumble that you barely remember.

I wish you and your Mom the best, you will find lots of helpful “survivors” here. Ignore that statistics on the internet they are dated and don’t take into account staging, personal health history, or the person’s support system. It sounds like your Mom has a great support system in you.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009

Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU

Eight Year Survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Hello again Sheri ~

In one of your letters you wrote the following:

“The hospital in question is a hospital in Kenansville, NC, but they are associated with Vident Medical in Greenville, North Carolina.  They have referred her to a surgeon at Leo Jenkins Cancer Center in Greenville, NC.  Looking at the rankings of hospitals for cancer treatment at US News, I can see that both Duke and Chapel Hill are ranked while Leo Jenkins is not.”

My research tells me that NONE of the hospitals in Greenville or Kenansville are qualified to be treating your mother IF she indeed has Esophageal Cancer.  I use the word “IF” because NO ONE is certain about your mom’s exact problem. 

Since there has been no definite diagnosis as yet for your mother, but doctors at a local hospital “suspect” it could be Esophageal Cancer, I did some research for the best hospitals in the NC area that specialize in Gastroenterology and GI series—the category under which Esophageal Cancer is ranked. As you found out--there are two NC universities that are ranked in the top 50 hospitals who list as one of their specialties—Esophageal Cancer.  You might be surprised to learn that: University of North Carolina ranks #30 while Duke University ranks #40. 

On the map, I see that these two universities are only 11 miles apart.  If I were you, I would inquire at both hospitals and ask if the Ivor Lewis Minimally Invasive Esophagectomy is performed at their facility.  If so, I would ask for a recommendation. 

So if Mom isn’t keen on traveling outside the state of NC, these would be your two best choices for testing.  As I’ve said before, I would schedule a work-up with either of these and waste no more time with “Leo Jenkins Cancer Center in Greenville, NC.  Perhaps your mother doesn’t realize that just because a hospital lists “cancer” as a condition which they can treat, it doesn’t include all kinds of cancer! 

In any event, your mother should go to either UNC or Duke University for preliminary testing to see exactly what her problem is.  Either one is fully equipped to conduct all the necessary tests to reach a conclusion as to your mom’s medical problem.

Now you might be so bold as to ask the surgeon at “Leo Jenkins” if he knows of qualified surgeons at either hospital who are trained to perform the Ivor Lewis Minimally Invasive Esophagectomy (MIE). 

You might ask UNC and/or Duke University if you have to have a “special referral” or can you just schedule your own appointment.  So for starters, if it were me, I would place a call to both hospitals and ask about the type of esophagectomy performed there, prior to scheduling an appointment. 

For that reason, I won’t give you multiple references on EC until it is confirmed that your mother actually has Esophageal Cancer.  So below my name are references that should help.

Loretta

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 1.      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."

___________________________________________________  

 [My note:  Sheri – I sent an e-mail at 11:28 PM 3-11-18 to UNC that read—“Do you have thoracic surgeons trained to perform the Ivor Lewis Minimally Invasive Esophagectomy?  If so, can you tell me the name of the surgeon? I have a friend who needs a SECOND opinion, and if surgery is possible, they would prefer the Ivor Lewis Minimally Invasive Esophagectomy. Thanks – Loretta”]

 2.    https://www.med.unc.edu/cedas/for-patients/clinical-services

“Our Services

We provide office-based consultations, as well as the following endoscopic procedures and motility tests:

1. Upper Endoscopy
2. Endoscopic Therapies for Barrett’s Esophagus: 
1. Radiofrequency Ablation (RFA)
2. Endoscopic Mucosal Resection (EMR)
3. Endoscopic CryoSpray Ablation
4. Endoscopic Balloon Cryo Ablation
3. Esophageal Dilations
4. Esophageal Stenting
5. Peroral Endoscopic Myotomy (POEM) for treatment of swallowing disorders such as Achalasia
6. Endoscopic Ultrasound (EUS)
7. High Resolution Esophageal Manometry
8. Esophageal Function Test
9. Impedance and pH Probe Monitoring

For more detailed information on each specific procedure and test:

 CEDAS GI Procedures and Tests

 We offer the most advanced diagnostic techniques and treatments for a wide variety of esophageal conditions including:

1. Gastroesophageal Reflux Disease (GERD)
2. Erosive Esophagitis
3. Eosinophilic Esophagitis (EoE)
4. Barrett’s Esophagus (BE)
5. Esophageal Cancer
6. Esophageal Narrowing and Strictures
7. Difficulty swallowing

For more detailed information on these conditions: CEDAS GI Esophageal Conditions

For additional questions and information regarding UNC Gastroenterology:
UNC Gastroenterology Clinic
UNC GI Procedures Unit
UNC GI Motility Lab…”

________________________________________ 

 3.     https://health.usnews.com/best-hospitals/area/nc/duke-university-medical-center-6360355/rankings

 Duke University Hospital

 #40 in Adult Gastroenterology & GI Surgery Hospitals

Duke University Hospital in Durham, NC is nationally ranked in 13 adult specialties and 10 pediatric specialties.

65.3/100 Gastroenterology & GI Surgery Score

______________End of references for now________________

Hello Sherri, I just spent 2016 going through the same situation. You have caught it sooner than I did, I did have major problems swallowing when I had it checked out. Mine was stage 3 and I went through the radiation and chemo theorapy at WMCC in Kalamazoo, MI. It is very important to get the diagnosis and start the correct theoropy quickly it is a fast growing cancer. It is not a death sentence and can be cured. I had my surgery done at the University of MI, which does 120 esophengectomy's a year. At stage 3 they surgery was a lot more extensive than I think your Mom will need. I was told stage 1-2, the surgery is first and can be done through the esophogeous; after stage 3 Chemo and Radiation first and then surgery. I have recovered and have been cancer free for 2 years. Keep positive, take second opinions to get all the information, and get treatment quickly. I'll pray for your Mom.

I underwent a radical neck dissection back in 08 for stage 4 esophogeal cancer and even though I went to MD Anderson, Luckily for me my new wife at the time was also an RN for some 40 yrs and she cautioned me to not be blinded by the white coat syndrome as she said all it takes to get that white coat is a passing grade and with that being said all I'm trying to impart to you is that if it doesnt make sense or you dont understand ask questions and never hesitate to get a 2nd opinion! Also research alternative medicines My wife is also adept at them and although not for everone she worked mircales for me and I credit her as much as them for me being here today and in all honesty had I listened to her when she tried to get me to go to an ENT doctor after I got hoarse I wouldnt have this traech now! LOL Needless to say when she says I need to do something I simply get up and hug her and say Thank you for caring enough to do what you've done for me because I ruined us financially fighting my cancer and yet she wakes up every morning with the same sweet smile and dispostion, I'm truly broke but blessed and alive! Good luck and God bless!