1979bmg~Clinical trial results R fantastic~Clarify 4 me~R U A Stage III or Stage IV Esophageal Cance

LorettaMarshall
LorettaMarshall Member Posts: 662 Member
in Esophageal Cancer #1

Dear “1979bmg”

Can you clarify something for me?  I’m a bit confused.  When you first wrote us in September of 2017, you said you were Stage IV.  https://csn.cancer.org/node/312093

You also wrote on April 23, 2018, you asked “Does anyone know of someone like me who is unable to have surgery?”  https://csn.cancer.org/node/312093

Now today, May 2, 2018, you write that you are “T3N2.  (Your post  https://csn.cancer.org/comment/1626007#comment-1626007).”

Normally, Stage III EC patients are considered candidates for an esophagectomy.

 My husband was diagnosed in November of 2002 with Adenocarcinoma at the Gastroesophageal Junction (T3N1M0).  He had neoadjuvant (pre-op) chemotherapy and radiation. The treatments were totally successful, but we were told at the very beginning, even if the pre-op treatments show to be 100% successful, that an Esophagectomy would still be necessary.  So on May 17, 2003 my husband went to the University of Pittsburgh Medical Center and had an Ivor Lewis Minimally Invasive Esophagectomy (MIE).  Twenty-two lymph nodes were removed during surgery and sent to pathology.  None proved to have residual cancer.  So no adjuvant (post-op) chemo treatments were necessary.

So you can bet we are thanking God and rejoicing over being a “T3” EC patient these 15 years later and with no recurrence.  So my question is “What stage are you?—T3 or T4?  That makes a world of difference. 

 Your comments here on April 20th are interesting. https://csn.cancer.org/comment/1625767#comment-1625767  Your last sentences intrigue me. 

You write:  “I am finally at a point where chemotherapy and radiation combined is at least a possibility. The downside is I would have to leave the immunitherapy trial, and there is no getting back into it once you leave. But what I am currently doing continues to work, and a complete response is still looking more and more likely at this point. I'm not sure if you believe in miracles, but statistically I should be dead or dying by now.

God must want me on this Earth a little longer for some reason.”

Here are my thoughts concerning your April 20th update.  (And yes, I believe in an omniscient, omnipotent, omnipresent God who is still performing miracles!)

Want my opinion?  As a Peritoneal Carcinomatosis/Ovarian Cancer Stage IV patient, if I were you, I would stick with the immunotherapy clinical trial.  It seems that immunotherapy drugs are proving to be effective in more than one kind of cancer.  From my past reading on this site for now 15 years, I know that Stage IV EC patients are only given palliative treatments.  Most often that will be “chemotherapy & radiation”.  I say “only” because with Stage IV, once the cancer has moved on to invade other organs, an Esophagectomy does not solve the problem.  Ed is one of our longest survivors since his recurrence. 

(And a note to some who write here and say, “I’ve ruled out surgery, even though I’m a candidate, because of the quality of life afterwards”—may I say this?) You should not "forfeit the right to live a good life after having an Esophagectomy.  No one but God knows who among us will have a recurrence, and who will go on to live out the rest of their days cancer free.  

My husband is a 15-yr. survivor of Esophageal Cancer Stage III (T3N1M0).  I would NEVER have ruled out surgery.  It’s a blessing to be able to be a candidate.  I have yet to read of a long-term survivor who had advanced-stage Esophageal Cancer and refused surgery to write here and say, “I’m still alive 15 years later!”  Now God can, and is the Miracle Worker, but He has also gifted surgeons who have a special talent to treat Esophageal Cancer patients down here on Planet Earth.   And believe me, there’s a great difference between thoracic surgeons.  And on another note, if my husband had tested positive for residual cancer in lymph nodes that were removed during surgery, I would NEVER refuse post-op chemotherapy. And if my husband should have a recurrence and died, we wouldn't trade anything for the extra 15 years God gave us!  

 Some have written here to say that the first year after surgery is HELL.  That depends on whether or not you had complications or had to undergo additional chemo for residual cancer.  It has not been our experience to say that the first year after surgery was HELL.  In fact it was a “celebration”.  The things we coped with were just normal for that first year of acclimating to a new way of life. 

There is a natural progression after surgery to get back to normalcy.  The new normal will always be sleeping in an elevated position so that the gastric acids do not seep back up into the throat.  And we all know that there are still some awful occasions where that does happen.  But it’s the price you pay for being alive and cancer free.  It does not happen all the time. 

 The other new normal is learning what, when and how to eat.  Eventually, the patient will be able to return to his normal pattern of eating, but in moderate amounts.  You don’t have to rule out steak and potatoes for a lifetime.  Each one of us knows the foods they like, and gradually they will be able to eat them again.  So if I had to describe HELL, in the context of the EC experience, it would be the initial stages of diagnosis, treatments and wondering IF you’re going to be able to have the operation.

If I were you, I would NOT “change horses in the middle of the stream”.  These clinical trial results are “miraculous”.   I haven’t read of others having a more positive result on the “usual traditional palliative chemo and radiation treatments” that are routinely prescribed for Stage IV EC patients.  I would love to have such a response from an immunotherapy drug, but as yet there are none for me as an Ovarian cancer Stage 4 patient.  Yet I thank God daily that He has given me 5 extra years when I could have died so many years ago.  I am always excited when I read about an immunotherapy clinical trial that is showing promise and showing as good as, or better, results than with chemotherapy and radiation.

 So lastly, one more time, can you clarify exactly where you are at this point? 

 What is your official diagnosis? 

 If you are a Stage 3, then why are you not eligible for an esophagectomy if your scans show an "all clear?"Undecided 

 Looking forward to having you clarify for me just exactly what is your current status—Stage 3—Stage 4—Surgical candidate—Not a surgical candidate? ?  ? ?

Am really—really happy to hear of such good results from your clinical trial. Smile

Loretta (Husband William had a totally laparoscopic MIE by Dr. James D. Luketich at the University of Pittsburgh Medical Center on May 17, 2003.  William is still cancer free!) 

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The first references are videos featuring Dr. Luketich.  We could not be prouder of this “pioneer” of the MIE, who performed MIE surgery on William. Here is Dr. James D. Luketich in a video.  Sorry about the long web reference but I didn’t know where to cut it off. 

1.                http://search.myway.com/search/video.jhtml?n=7848e35d&p2=^BYD^xdm257^TTAB02^us&pg=video&pn=1&ptb=8C120FBD-93C8-4FD4-AB55-EB772D50A7B9&qs=&searchfor=upmc+dr+luketich+video&si=AID8-GS&ss=sub&st=tab&tpr=sbt&trs=wtt&vidOrd=1&vidId=mFboj87THJE

 

Oct 16, 2014 | 3,546 views | by UPMC

Dr. James Luketich discusses innovation and research at UPMC, and why he chooses to work here.

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2.       http://www.upmc.com/Video/Pages/default.aspx?vcat=937;#3753ef4c-73b8-4be7-b0c7-9c5fd91b952c|Lung+and+Thoracic+Surgery

 

Video by Dr. Inderpal Sakaria talking about treatment at UPMC for MIE procedures.  (I don’t know if Dr. Sakaria is still at UPMC, but I know he went to UPMC and trained under Dr. Luketich at the time of this video)

Note there are 2 Short Videos by Dr. James D. Luketich – one for Esophagectomies and one for treating GERD

“Esophageal Cancer: Surgical Innovations

​James D. Luketich, MD, highlights advances in esophageal cancer treatment through innovative surgery. The UPMC Esophageal and Lung Surgery Institute is a leader in developing novel surgical approaches to minimize recovery time and scarring while maximizing results and quality of life for patients after surgery. “

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3.       http://www.upmc.com/Video/Pages/default.aspx?vcat=937;#3753ef4c-73b8-4be7-b0c7-9c5fd91b952c|Lung+and+Thoracic+Surgery

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4.       https://www.youtube.com/watch?v=7S3owHnfcCs

 #CITSAC 2017#James D. Luketich

ASVIDE - Published on Aug 18, 2017

Meet the Professor in the 2017 Beijing International Academic Conference on Thoracic Surgery and the 5th National Cancer Center Annual Conference

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 Esophageal cancer comes under the heading of Gastroenterology and GI surgery.  Check out the 50 top hospitals that are ranked according to their ability to treat patients diagnosed with Esophageal Cancer.

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

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6.       https://www.cancer.net/cancer-types/esophageal-cancer/stages

“Esophageal Cancer: Stages

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

 ON THIS PAGE: You will learn about how doctors describe a cancer’s growth or spread. This is called the stage. In addition to stage, a cancer’s growth may also be described by its grade, which describes how much cancer cells look like healthy cells. To see other pages, use the menu.

 Staging is a way of describing where the cancer is located, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to find out the cancer's stage, so staging may not be complete until all the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of cancer.

TNM staging system

One tool that doctors use to describe the stage is the TNM system. Doctors use the results from diagnostic tests and scans to answer these questions:

1.     Tumor (T): How deeply has the primary tumor grown into the wall of the esophagus and the surrounding tissue?

2.     Node (N): Has the tumor spread to the lymph nodes? If so, where and how many?

3.     Metastasis (M): Has the cancer metastasized to other parts of the body? If so, where and how much?

 

The results are combined to determine the stage of cancer for each person. There are 5 stages: stage 0 (zero) and stages I through IV (1 through 4). The stage provides a common way of describing the cancer, so doctors can work together to plan the best treatments.

Here are more details on each part of the TNM system for esophageal cancer:

 

Tumor (T)

Using the TNM system, the "T" plus a letter or number (0 to 4) is used to describe the tumor, including whether the cancer has grown into the wall of the esophagus or nearby tissue, and if so, how deep. Some stages are also divided into smaller groups that help describe the tumor in even more detail. Specific tumor stage information is listed below.

TX: The primary tumor cannot be evaluated.

T0: There is no cancer in the esophagus.

Tis: This is called carcinoma (cancer) in situ. Carcinoma in situ is very early cancer. Cancer cells are in only 1 small area of the top lining of the esophagus without any spread into the lining.

T1: There is a tumor in the lamina propria and the 2 inside layers of the esophagus called the submucosa. Cancer cells have spread into the lining of the esophagus.

T2: The tumor is in the third layer of the esophagus called the muscularis propria. Cancer cells have spread into but not through the muscle wall of the esophagus.

 

T3: The tumor is in the outer layer of the esophagus called the adventitia. Cancer cells have spread through the entire muscle wall of the esophagus into surrounding tissue.

 

T4: The tumor has spread outside the esophagus into areas around it. Cancer cells have spread to structures surrounding the esophagus, including the large blood vessel coming from the heart called the aorta, the windpipe, diaphragm, and the pleural lining of the lung.

 

Node (N)

The “N” in the TNM staging system stands for lymph nodes. In esophageal cancer, lymph nodes near the esophagus and in the chest are called regional lymph nodes. Lymph nodes in other parts of the body are called distant lymph nodes.

NX: The lymph nodes cannot be evaluated.

N0: The cancer was not found in any lymph nodes.

N1: The cancer has spread to 1 or 2 lymph nodes in the chest, near the tumor.

 

N2: The cancer has spread to 3 to 6 lymph nodes in the chest, near the tumor.

 

N3: The cancer has spread to 7 or more lymph nodes in the chest, near the tumor.

 

Metastasis (M)

The "M" in the TNM system indicates whether the cancer has spread to other parts of the body.

MX: Metastasis cannot be evaluated.

M0: The cancer has not spread to other parts of the body.

M1: The cancer has spread to another part of the body…”

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 7.         https://www.cancer.net/cancer-types/esophageal-cancer/treatment-options

Esophageal Cancer: Treatment Options

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

ON THIS PAGE: You will learn about the different ways doctors use to treat people with this type of cancer. To see other pages, use the menu.

This section tells you the treatments that are the standard of care for this type of cancer. “Standard of care” means the best treatments known. When making treatment plan decisions, patients are also encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn if it is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About Clinical Trials and Latest Research sections…”

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 8.       https://www.cancer.net/cancer-types/esophageal-cancer/questions-ask-doctor

Esophageal Cancer: Questions to Ask the Doctor

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

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. To see other pages, use the menu.

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your cancer care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

 Questions to ask after getting a diagnosis

  • What type of esophageal cancer do I have?
  • Is the cancer located only in my esophagus?
  • What is the stage and grade of the disease? What does this mean?
  • Can you explain my pathology report (laboratory test results) to me?

Questions to ask about choosing a treatment and managing side effects…”

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9.       https://www.cancer.net/cancer-types/esophageal-cancer/about-clinical-trials

 “…Patient safety and informed consent

To join a clinical trial, patients must participate in a process known as informed consent.  During informed consent, the doctor should list all of the patient’s options, so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different than the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends.

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for esophageal cancer, learn more in the Latest Research section.

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

 

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research. It explains areas of scientific research currently going on for this type of cancer. Or, use the menu to choose another section to continue reading this guide.”

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