Hope this Helps! Heather (AKRN2013)

rose20
rose20 Member Posts: 258
edited April 2013 in Esophageal Cancer #1

 

Hello Heather,

 

So sorry to hear about your dad, how horrible for him to be diagnosed with this dreadful cancer and for all of you. I know this is a journey you all do not want to be on.

 

This month (April), just so happens to be Esophageal Cancer Awareness Month. So many have never heard of Esophageal Cancer, I know I never did until my dear brother was diagnosed with it, stage IV, inoperable in 2010, he was only 51 at diagnosis. My brother fought hard to the end, he went Home with the Lord November 2012, 5 months ago.

 

I knew nothing about this cancer but when my brother was diagnosed I hit the internet to find out whatever I could and I found this site and met some very knowledgeable people who helped me tremendously.

 

Here are some links from reputable surgeons and hospitals that are familiar with Esophageal Cancer and the Minimally Invasive Esophagectomy, from which I hear is the best type of surgery to have.

 

http://www.thoracicsurgery.medicine.pitt.edu/content/Minimally_Invasive_Esophagectomy.pdf

 

Some information I hope will be helpful to you:

 

It is highly unusual for surgery to be scheduled first prior to having pre-op workup with neo-adjuvant chemotherapy and radiation. In the case of a "T3N1M0" diagnosis, this indicates that the tumor has invaded all four walls of the Esophagus and has also infiltrated at least one or two lymph nodes nearby.

 

· The chemo and radiation is administered to help stop any further spread to other organs. Once it has entered the lymph nodes, it is free to travel to another major organ. If it reaches another major organ, no surgery can be performed. In that case only palliative measures of chemo and radiation can be given.

http://www.upmccancercenters.com/pdq_xml/cancer.cfm?id=54

 

· http://www.cancer.net/cancer-types/esophageal-cancer

 

· http://www.oncolink.org/types/article.cfm?c=5&s=12&ss=769&id=9465&CFID=40774200&CFTOKEN=68548714

 

　

 

You posted:

 

"… We finally have staging: Stage 3, T3N1M0. The oncologist is recommending surgery first and then chemo and radiation. She said that chemo and radiation before surgery is an approach they are taking in Europe but not here in the states. I am confused by this because most of my research says chemo/radiation first. I will continue to research.

 

They meet with the oncological surgeon Friday. I have asked to be teleconferenced in. I have concerns that the surgeon he was referred to is not an esophageal expert. He apparently is an expert in pancreatic cancer (in fact he was Steve Jobs surgeon) but I can find no data on his experience with esophageal cancer. …"

 

　

 

Here is a link that indicates tri-modal treatment has proven to be the best course of action when one is diagnosed with EC.

· http://www.medpagetoday.com/MeetingCoverage/ASCOGI/24462

Although Steve Job’s doctor is an expert in Pancreatic cancer, that doesn’t qualify him to be an expert in Esophageal Cancer.

 

It's always good to get a SECOND OPINION. I so wish my brother had done this at the very beginning.

 

　

 

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

 

 

 

you can always research any doctor to see his level of expertise by accessing the web.

 

· http://www.ucomparehealthcare.com/

 

· http://www.healthgrades.com/directory_search/physician/profiles

 

　

 

Their biography should include several medical papers relative to the subject of Esophageal Cancer that have been accepted for publication. This is one way to judge the level of their expertise. Both Dr. James D. Luketich and Dr. Ninh Nguyen will have "exhaustive" lists of articles that have been selected by the medical community for publication.

 

See if you can schedule a SECOND OPINION with Dr. Ninh Nguyen, just call his office and ask who they know in Stanford or UCSF that performs the MIE, and who would be their recommendation. It’s as easy as picking up the phone and calling. Many with EC on the West Coast knows about how great Dr. Nguyen is. He performs the laparoscopic procedure (MIE).

 

　

 

Here is a link from UCIrvine with video narration explaining Esophageal Cancer and treatment.

 

· http://www.ucirvinehealth.org/medical-services/esophageal-disease/videos/esophageal-cancer/

 

I will try to add more information as soon as I can.

 

　

 

Hope this helps!!

 

　

 

rose

 

　

 

Comments

  • rose20
    rose20 Member Posts: 258
    #2
    Computer Problems!!

    Sorry, I am having problems with my computer.

    Hope you can read the above post.

     

    Has anyone informed you of which type of surgery your Dad would be having? Has anyone told you that there are three basic types of surgery for the removal of the Esophagus? The latest being the totally laparoscopic procedure known as the "Minimally Invasive Ivor Lewis Esophagectomy" pioneered by a Dr. James D. Luketich at the University of Pittsburgh Medical Center?

    Here is a description of the MIE procedure as performed by UPMC –

    · http://www.ctsnet.org/doc/6762

    Description of the MIE –

    · http://www.ncbi.nlm.nih.gov/pubmed/21792712

    In this procedure, there are only small band aid size cuts instead of massive incisions. There are other types of surgeries, the "TransThoracic" (TTE) and the "TransHiatal" (THE), both of which can result in a successful surgery but with much more invasion of the body cavity, with more possibilities of complications, morbidity and longer recovery time. The minimally invasive one, MIE for short, is the newer one.

    · http://www.nlm.nih.gov/medlineplus/ency/article/007396.htm

    Fewer surgeons have been adequately trained in the latest laparoscopic technique. You need to seek out a major facility that performs the MIE procedure on a regular basis. There will be different surgeons within the same hospital complex that are trained in different procedures. Try to seek out a Thoracic surgeon thoroughly trained in the latest and least invasive procedure, that being the MIE.

    My brother's oncologist recommended my brother to a surgeon for possible surgery, even though my brother was told at diagnosis he was inoperable. After the visit with that surgeon my brother felt he should not even attempt to try and go with this surgeon who was not even a thoracic surgeon at all, who was unqualified for such a surgery but who was willing to cut on my brother.

    So please be careful!! If my brother would have agreed to this he would not have survived that surgery in his delicate condition.

    It's hard to believe but their are surgeons who are willing to do surgery when they themselves are not an expert in this field. Crazy!!

    There is one young thoracic surgeon who operates out of UCIrvine in California who is thoroughly versed in the new procedure, named Dr. Ninh Nguyen (pronounced "nen wen"). He worked with and trained under Dr. James D. Luketich in the mid 90’s when the procedure was first developed. He is brilliant and a scholar in his own right, having a multitude of articles referencing Esophageal Cancer accepted for publication in the medical community.

    Here is a link to his profile at the University of California Irvine –

    · http://faculty.uci.edu/profile.cfm?faculty_id=5621

    Here is the video link to view an MIE in progress. It is narrated by Dr. Nguyen, and is shown at different intervals of the surgery, and last for 45 minutes.

    · http://www.youtube.com/watch?v=hx4hS21AbuI

    I hope this information  will help in making the very best decisions for your Dad. We thank him for his military service to our country. NOW he deserves the best service in return.

    Prayers for guidance in the decisions you will have to make.

    Rose

  • AKRN2013
    AKRN2013 Member Posts: 22
    #3
    rose20 said:

    Computer Problems!!

    Sorry, I am having problems with my computer.

    Hope you can read the above post.

     

    Has anyone informed you of which type of surgery your Dad would be having? Has anyone told you that there are three basic types of surgery for the removal of the Esophagus? The latest being the totally laparoscopic procedure known as the "Minimally Invasive Ivor Lewis Esophagectomy" pioneered by a Dr. James D. Luketich at the University of Pittsburgh Medical Center?

    Here is a description of the MIE procedure as performed by UPMC –

    · http://www.ctsnet.org/doc/6762

    Description of the MIE –

    · http://www.ncbi.nlm.nih.gov/pubmed/21792712

    In this procedure, there are only small band aid size cuts instead of massive incisions. There are other types of surgeries, the "TransThoracic" (TTE) and the "TransHiatal" (THE), both of which can result in a successful surgery but with much more invasion of the body cavity, with more possibilities of complications, morbidity and longer recovery time. The minimally invasive one, MIE for short, is the newer one.

    · http://www.nlm.nih.gov/medlineplus/ency/article/007396.htm

    Fewer surgeons have been adequately trained in the latest laparoscopic technique. You need to seek out a major facility that performs the MIE procedure on a regular basis. There will be different surgeons within the same hospital complex that are trained in different procedures. Try to seek out a Thoracic surgeon thoroughly trained in the latest and least invasive procedure, that being the MIE.

    My brother's oncologist recommended my brother to a surgeon for possible surgery, even though my brother was told at diagnosis he was inoperable. After the visit with that surgeon my brother felt he should not even attempt to try and go with this surgeon who was not even a thoracic surgeon at all, who was unqualified for such a surgery but who was willing to cut on my brother.

    So please be careful!! If my brother would have agreed to this he would not have survived that surgery in his delicate condition.

    It's hard to believe but their are surgeons who are willing to do surgery when they themselves are not an expert in this field. Crazy!!

    There is one young thoracic surgeon who operates out of UCIrvine in California who is thoroughly versed in the new procedure, named Dr. Ninh Nguyen (pronounced "nen wen"). He worked with and trained under Dr. James D. Luketich in the mid 90’s when the procedure was first developed. He is brilliant and a scholar in his own right, having a multitude of articles referencing Esophageal Cancer accepted for publication in the medical community.

    Here is a link to his profile at the University of California Irvine –

    · http://faculty.uci.edu/profile.cfm?faculty_id=5621

    Here is the video link to view an MIE in progress. It is narrated by Dr. Nguyen, and is shown at different intervals of the surgery, and last for 45 minutes.

    · http://www.youtube.com/watch?v=hx4hS21AbuI

    I hope this information  will help in making the very best decisions for your Dad. We thank him for his military service to our country. NOW he deserves the best service in return.

    Prayers for guidance in the decisions you will have to make.

    Rose

    Thank you so much Rose!

    Thank you so much for all of the information.  I will pour over it today.

    I am so sorry to hear about your brother. This is truely a devastating disease.  So, We will meet with the Surgeon at Stanford today to determine surgical options.  I have tried to research all of our options and will be the medical reference for my family.  I happen to be a pediatric ICU RN with a specialty in pediatric oncology.  While this is not a pediatric cancer I am familliar with many of the tems and the treatments.  Unfortunately, my parents have the attitude that Dr knows best so it is up to me to advocate for his health.

    I have no problem asking for a second opinion and will definatly push  it if I do ot feel that this surgeon is the best qualified.   I will keep you updated adn let you know what they say later tonight.

     

    Thank you again for taking the time to gather all of that information for me.  I truely appreciate it!!

     

    Heather 

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