Esophageal Cancer Type IV no Operation 'Survivor'?

tanseyj

I was diagnosed with Esophageal Cancer on 29 Sep 2014! Immediately had a CAT Scan to confirm no Metastasis. Was givin a port for chemo. Was given a feeding tube 'just in case'? Started series of chemo and then simutanious Radiation (28). Was scheduled for surgery and about 2 weeks prior I discovered a tiny lump under my armpit, now Type IV. Biopsy said malignant and removed. Now no chance of Surgery? Back on chemo for 10 sesions (chemo for 2 hours with the pump for 46 hours) with three more to come! Meanwhile had an MRI, CAT and PET scans! All showed no mets?  Had and Endoscope 3 weeks ago and it showed 'no cancer'?  Nice clear pink pictures?  

Has anyone out there experiened my situation? I am very happy to hear the 'no cancer' of the Endoscope! No talk about an operation, is this normal?  I still am unable to eat through my mouth, even juice does not always go down?  I have been experiencing 'thick white mucus' from my throat for several days now?  Have to keep 'hacking it up. So bad that I cannot go to a store or far in a car without having to do this?  I am scheduled to have my Esopagus 'stretched (dialated?) on Sep 4th at the Univ Hospital in Tucson!  Hoping this will allow me to eat again. I realize it may take a few of these procedures. Anyone had this also? I am 74 years old! Never any major problems! Have had no pain with the cancer? Chemo and radiation presented not much after effects and took them well! With this diagnosis woul I be considered a 'Survivor'?  My hopes are high, and I have always remained optomistic and in good humor over this! I think that helps! I do play softball with a not so senior league? Girls 25 and men 45 and up!  Other than a little fatigue I feel pretty good everall, except for the mucus problem. Am hoping that will go away withthe 'stretching'? Cheers!

PriscillaH

How are you now?

You are the first person after alot of research and reading that seems to have same situation as my mother who was hospitalized this week. She has not been able to eat for months, her biopsy yesterday was negative inside esophagus.... so they want to test the outside? She was told she would do chemo and radiation but so far two attempts to put a scope in for a feeding tube have failed because they couldn't get it down the first time and the second time she was chocking on her own saliva and couldn't stop to even try the procedure. Please share with me anything you may think is helpful. Good or bad. Oh her PET scan was 9-11 do you know what this means. Her hospital is an hour away and I work two jobs, seven days a week so she is trying not to worry me but after less than a week since the cancer would was used, I'm desperate for answers so I can stay strong for her and not feel like I'm hassling her with questions shes not ready to answer or honestly doesn't know either.

LorettaMarshall

Your ltr now makes me have more questions than answers!

Understand that I am not a doctor, but speak from experience as the wife of a 78-year old Esophageal Cancer Stage III  (T3N1M0) survivor now entering his 14^th year of survival.  His latest PET/CT scan conducted on August 13, 2015, showed NED (No Evidence of Disease).  For that we truly thank the Lord. 

First I know that all who share their stories on this site can identify with the pain and suffering that accompanies a diagnosis of Esophageal Cancer.  We make up a unique EC family.  Truly we “weep with those that weep and rejoice with those that rejoice.”  And with this cancer, there are times for both in many cases.

I see that no one has answered your initial inquiry from August, and neither have you given us any kind of update.  It is now November 15, 2015.  Sometimes, we are just unable to answer one’s questions because there are no definitive statements in the original posting that give us a clue.  Your letter is one case in point.  Frankly, your letter has raised more questions in my mind.  Furthermore, I see that “Priscilla” is asking about your present state of health.  And so are we!

Some of your statements arouse my curiosity and raise several questions in my mind as I read your story such as:

What other tests besides a CAT scan did you have to arrive at the diagnosis of Esophageal Cancer?

1. All Esophageal Cancer is defined by a Stage.  What was the actual stage of your cancer PRIOR to finding a tiny lump in your armpit?

2. What was the new stage AFTER the surgical removal of that malignant “lump”?

3. What kinds of chemo were administered?  I understand you had 28 sessions of radiation.  You are blessed to have undergone the chemo/radiation regimen with little difficulty. 

4. When you say you had an Endoscope, did you have a simple Endoscopy?  Or rather, did you have an Endoscopic Ultrasound often referred to as an “EUS”? At this point, usually a stage can be determined.  However, you never stated your stage.  The only number I see is an “IV”.  That number is always scary when someone just puts it out there with no additional explanation.

5.  It appears you are saying that you were first diagnosed with Esophageal Cancer and had chemo and radiation.  But then, a tumor was found under your armpit.  At that point, surgery was ruled out.  Now you want to know if you are cancer free even though you haven’t had surgery.  That is certainly a question I cannot answer.  Did the doctors use the word metastasis?  I hope you have asked your doctors the same questions you have asked us.  Moreover, I hope they have explained it to your satisfaction. If so, please tell us what the answer was.  

For a simple Endoscopy, a gastroenterologist can get a clear view of the digestive tract.  The Endoscope has a tiny TV camera and light on the end of it.  In addition, when it is “fitted” with a miniaturized ultrasound probe, the endoscope can also produce images of organs that lie out of sight of the wall of the stomach. With the help of fine-needle aspiration (FNA), doctors can accurately diagnose suspected cancers, or determine how far they have spread.  And EUS is critical to proper staging of Esophageal Cancer.  That is why I ask about the “initial stage” of your cancer.

Here is a video from the MAYO CLINIC that describes the purpose of an Endoscopic UltraSound, often referred to as an “EUS”. 

https://www.youtube.com/watch?v=NreeQ5eViiU

 6.  You state that an MRI, CAT and PET scans showed no malignancy anywhere.  Yet you say often you can’t even swallow juice, yet the “Endoscope” showed no cancer.  When this procedure was done, did it show a narrowing at any point?  If it did not, then why was a dilation of the Esophagus recommended?  One would think that if you have difficulty swallowing juice that some obstruction would have been noted when the Endoscopy was performed. 

7.  Have you lost weight?  What are you able to eat if juice is often difficult to swallow?  What kind of a feeding tube were you given?  Have you been using the feeding tube?  A “J” tube works well since it goes into the second section of the small intestine called the Jejunum, and from there nutrients are dispersed throughout the body.   That way, even though one is unable to swallow, the body can still receive nourishment.   

 8.  By now, you must have had another CT scan, at the least to see the progress of the completed treatments.  What was the result?

9.   If you only had a problem with mucous, that would be something that EC survivors of all ages may cope with from time to time, but what you describe would appear to me to be something that needs more testing.   You say you can’t eat and even drinking juice doesn’t seem to go down.  These are symptoms that usually one has initially that causes them to see their physician.  At that point, many tests are conducted to find the cause.  Constantly “hacking” up a white foamy substance and not being able to eat, make me question the description of “pretty pink pictures!  ”If this were my husband, knowing what we know now, we would not be content to just have a dilation (a stretching of the Esophagus).   What other tests besides a CAT Scan did you have to arrive at the diagnosis of Esophageal Cancer? 10.   You state that an MRI, CAT and PET scans showed no malignancy anywhere.  Yet you say often you can’t even swallow juice, yet the “Endoscope” showed no cancer.  When this procedure was done, did it show a narrowing at any point?  If it did not, then one wonders why a dilation of the Esophagus would be recommended?  One would think that if you have difficulty swallowing juice that some obstruction would have been noted when the Endoscopy was performed.  11.  Have you lost weight?  What are you able to eat if juice is often difficult to swallow?  Is that still the case?  What kind of a feeding tube were you given?  Have you been using the feeding tube?  A “J” tube works well since it goes into the second section of the small intestine called the Jejunum, and from there nutrients are dispersed throughout the body.      12.  By now you have completed all those treatments you mentioned.  What is the final result?   May I ask if you have had a “SECOND OPINION” at some major facility where Esophageal Cancer is a specialty?  If the Banner University Medical Center is the hospital where you are being treated, Esophageal Cancer is not listed as one of their specialties.  They seem to do best in Geriatrics, Nephrology and Pulmonology.  And if I read the hospital statement correctly, they are not recommended for difficult cancers.  Any time one has a diagnosis of Esophageal Cancer Stage IV, it is a “difficult cancer” and is best treated at a major medical facility where treating Esophageal Cancer patients is their specialty.  Are there any major medical facilities close to you that treat EC patients on a regular basis?  Just in case you haven’t had a 2nd opinion, and wonder about a great place to go, I have listed the UPMC link below.   I would highly recommend a second opinion if you haven't had one.  I can’t comment on why you have not had surgery.  That cancerous tiny lump seems to be the reason no surgery was recommended, but exactly how did the doctors define the location of the small tumor?  That seems to have been the determinant factor.  When a cancer is staged as a IV, it means that the cancer has spread to nodes near or in another major organ.  Did they mention a second major organ?  The Esophagus being the first one, according to all that you say.  Once it has been determined that the cancer has spread from the Esophagus to another major organ for certain, only palliative measures are prescribed. Those measures often include radiation and chemotherapy.  In addition, clinical trials are available in many instances.   Esophagectomies are not performed on patients properly diagnosed as Stage IV.  As for your question am I survivor, you may still well be, even if you are really a Stage IV.  (But honestly from your letter, I am not quite certain of your Stage because your letter is not very specific as to initial symptoms and testing procedures.) On a good note, I have a friend who is diagnosed as Stage IV EC.  She has had extensive chemotherapy, however she has NOT had surgery.  She is now in her 4th year of survival and that's not usually the case.  So in that sense she is a survivor, but cancer left to itself continues to spread.  (That is, unless the good Lord decides to perform a miracle.  And that He can do, but the survival figures for Esophageal Cancer patients is not as good as for some other cancers.)   Recurrence rates for Esophageal cancer are disappointingly high.  So we never say, my husband William is “healed”.  We say he is now in his 14th year of remission.  And we are content with that, and thank God for each day we have together.   It’s good that you have enough energy to “play ball” with the younger crowd.  Hope that's still the case.  Keeping active as possible and having an optimistic outlook that is grounded in “reality” is a good thing.     So play hard—laugh often. “Laughter doeth the heart good like a medicine.”  You will feel better and it makes those around you feel better as well.  Obviously my letter has more questions than answers, but I wanted you to know that we have read your letter.  As a matter of fact, I read it soon after you wrote it, but since I was so “befuddled” by it, I came to the conclusion that I couldn’t give you a good answer.  However, since Priscilla has sent you a letter about her own mother, I thought at least someone here should acknowledge having read your post.  I have answered Priscilla at this link:  http://csn.cancer.org/node/298178 So now there are two ladies who want to know how you are doing.  Hopefully we will hear that all is still well.  If you are out there, let us know how things are going today. Sincerely, Loretta Marshall, (wife of William, currently in 14th yr. of remission) Patient of Dr. James D. Luketich @ UPMC (University of Pittsburgh Medical Center) Minimally Invasive Esophagectomy (MIE), May 17, 2003. 1.      http://health.usnews.com/best-hospitals/area/az/university-of-arizona-medical-center-6860516/rankings According to this link, it appears that this hospital ranks best in Geriatrics. Nephrology, and Pulmonology.  2.     http://health.usnews.com/best-hospitals/area/az/university-of-arizona-medical-center-6860516/cancer “% of doctors in this specialty responding to surveys in 2013, 2014 and 2015 who named hospital as among best for very challenging patients.”  As for the “Cancer Scorecard”—Am I reading this statement correctly?  In the years ’13, ’14 and ’15, this hospital is not rated among best for very challenging patients. 3.     http://www.cancer.org/cancer/esophaguscancer/detailedguide/esophagus-cancer-what-is-cancer-of-the-esophagus A good resource for learning more about Esophageal Cancer. 4.     http://www.upmcphysicianresources.com/cme-course/minimally-invasive-esophagectomy A video of Dr. James Luketich talking about the laparoscopic procedure known as the Ivor Lewis Minimally Invasive Esophagectomy.  This is a fantastic surgeon who pioneered the totally laparoscopic procedure known as the MIE.  This is my husband’s surgeon.  I highly recommend UPMC for a SECOND opinion.  Anyone wanting to know more about EC from one of the top surgeons in this country and around the world, actually, should view this video and keep it in a safe place for further research.  He suggests that often patients are referred to them that come with a Stage IV diagnosis, but upon closer examination, they are really NOT Stage IV, and surgery is possible after all.  That's the importance of a 2nd opinion from a reputable medical facility.  And then, of course, there are others who come to them for surgery, and sadly it is discovered that they are not a Stage III or less, but actually a Stage IV.  So 2nd opinions are really good for that reason.  It may be that one has given up hope when there really is hope.  And in all cases, one should go to a major medical facility where Esophagectomies are one of their specialities! 5.     http://www.ncbi.nlm.nih.gov/pubmed/22668811 “Outcomes after minimally invasive esophagectomy: review of over 1000 patients…  CONCLUSIONS: MIE in our center resulted in acceptable lymph node resection, postoperative outcomes, and low mortality using either an MIE-neck or an MIE-chest approach. The MIE Ivor Lewis approach was associated with reduced recurrent laryngeal nerve injury and mortality of 0.9% and is now our preferred approach. Minimally invasive esophagectomy can be performed safely, with good results in an experienced center.”     ·

 

 

 

SharonMI

Hi, my husband was DX with

Hi, my husband was DX with esophageal cancer, stage 4, he was a 10 year survivor. He also had the stretching procedure which helped him immensley to eat again