Initial treatment decisions: Stage II/III

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Hello all,

My 47 year old husband, and dad of our 11 year old twins was diagnosed with EC from an endoscopy with biopsy about a week ago. Since then our world has turned upside down, but I have learned a whole lot, thanks in part to this board. We are in the DC area and have moved the ball a fair bit in the last week. We have done PET scan, EUS, met with local oncologist, radiological oncologist, and a surgeon from Georgetown. He also underwent a failed procedure to place a feeding tube... Has lost 35 pounds already from lack of eating so we wanted it right away.  The tumor is T3 but the scans are in disagreement about whether a node is involved.  So N0 or N1.

Local docs want to do 5 wks taxol/carboplatin with 5.5 weeks radiation.  Surgery to follow 4-5 weeks later.  We were impressed with the surgeon. Does 30-60 of these per year.

This week we have a second opinion appt set up at Johns Hopkins and I just got us an appt at Sloan Kettering on April 11 re: this trial: https://www.mskcc.org/cancer-care/clinical-trials/16-1405

It seems the first line treatment is fairly standard.  The trial would do the same thing but add durvalumab, the immunotherapy drug.  Hitch is that you are on only the immunotherapy for the first month.  This seems to me to be the way to go if he gets in, but should we be concerned about waiting that long to start chemoradiation?  That is the one hesitation I have with the idea.  He grew up in NYC and mom still lives there so temporary relocation not a huge problem. 

Any advice would be greatly appreciated!  

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
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    One month to try targeted therapy does not seem unreasonable

    I am so sorry to hear that your husband finds himself in this situation at such a young age. Esophageal Cancer used to be called an “old man’s disease” but we are seeing many more folks diagnosed at a younger age.

    I am a bit surprised to read that your husband had a “failed procedure to place a feeding tube”. If we are talking about the placement of a jejunostomy feeding tube (J-tube), is a fairly straightforward procedure. Can I ask what the issue might be? I completed chemotherapy without a feeding tube, but I have to admit that having a j-tube to assist with nutrition and hydration would have made my journey easier.

    Traditional chemotherapy administration is typically done in 21 or 28 day cycles depending on the chemotherapy agents used; so taking one month to assess the benefit of a targeted therapy seems reasonable. I assume your husband’s oncologist has had a biopsy tested for HER overexpression. There are some that believe that HER positive esophageal cancer can be more aggressive. I am definitely not a healthcare professional, so my comments are based on my personal experience, and what I have seen as a survivor of esophageal cancer over the last seven years. I have seen many people take as long as six weeks to complete staging and beginning treatment so a month does not seem excessive.

    Of course when diagnosed with something like cancer we all want to get treatment started as soon as possible but a successful targeted therapy might be much easier on your husbands immune system than traditional chemotherapy.

    It sounds like you have found a surgeon that has some experience with esophagectomies. I would urge you to insure his/her experience is with minimally invasive laparoscopic surgery. I would also be careful to qualify the facility where your husband will recover from surgery. Even as “minimally invasive” surgery; this is a complicated surgery with an extended recovery time. Having an experienced recovery facility can make a major difference in potential complications after surgery. Sloan Kettering has a good reputation, if that is the facility you are considering. It is a National Comprehensive Cancer Network (NCCN) member institution. Since this is a Phase Ib/II Study your husband should get very close monitoring to assess both drug benefit and safety.   

    Wishing your husband the best as he completes treatment.

    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
    Seven Year Survivor

     

     

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
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    Magicbeans~U R smart to research EC & seek advice of EC vets!

    Hello “Magicbeans”

    Your “ID” conjures up memories of a story I learned as a child--Jack and the Beanstalk. Smile Now in the beginning they were poor, and so his mother sent him to town to sell the cow.  But on the way he met a man who said, “I’ll trade you these magic beans for your cow!”  And being a gullible young lad, Jack thought that surely sounded fantastic and so the “deal was done.”  When he returned home with some beans and NO money, his mother threw the beans out the window.  But by morning a giant beanstalk had grown up in Jack’s yard.  And being the curious fellow that boys are, (We raised 3!) Jack began to climb it.  And I think we know all the harrowing narrow escapes that Jack encountered when he met with the GIANT.  That story had a happy ending, and Jack and his mother lived happily and wealthy ever after.Money Mouth

    But alas, we all grow up and find that all those exciting stories were truly just “fairy tales.”  And how often we as adults wish we could “escape once more” to a land where everyone lives happily ever after?  But for now, so much for Jack & the Beanstalk.  But this much I will say, the story is analogous in many respects to the journey my husband and I took.  In our case our story had a “happy ending” and we are rich indeed to have survived the cancer for 14 years now.  And so in that respect “fairy tales can come true!” 

    Would you mind sharing with me who the local docs are and who is the surgeon at Georgetown? What type of surgery is he/she trained to perform?  There is so much I would like to say and share with you that I couldn’t even begin to put it all together at this wee hour of the morning. 

    You’ve come to the right place to talk with others who know what it’s like to have their world turned “upside down”!  Every one of us sympathize with you, believe me.  That said, we all want to see your story have a happy ending—although it is a rough ride, it can have a happy ending.  It’s always good to seek the advice of those who have traveled the road before you.  And to that end, we who are further along would love to help if we can. 

    Hoping & praying that you and your husband will strike it rich.  But a lot will depend on where you throw out those “magic beans!”

    Loretta

    Wife of William who was diagnosed with Esophageal Cancer, Stage III (T3N1M0), Nov. 2002-- neo-adjuvant chemo of Carboplatin/5-FU and 25 consecutive radiation treatments—Ivor Lewis Minimally Invasive Esophagectomy (totally laparoscopic) by Dr. James D. Luketich at the University of Pittsburgh Medical Center on May 17, 2003.  We are now celebrating William’s 14th year of being totally cancer free! Thank God.

  • Deathorglory
    Deathorglory Member Posts: 364 Member
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    Hello

    Hello Magicbeans,

    Sounds like you're on the right path, getting a second opinion at a world class cancer center and looking into a trial at another top center.  You are doing right by your husband; EC is major big deal stuff and should be treated as such.  I wouldn't worry very much about the trial delaying the chemo/radiation by a month.  That's fairly quick and likely worth the potential benefits of the durvalumab.  Please stay in touch as you travel down this road.

    Best Wishes,

    Ed

  • Magicbeans
    Magicbeans Member Posts: 4
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    So glad to hear from you all

    I can't thank you all enough for sharing your experiences and opinions on this board.  It has been an invaluable source of information already as I have read years of your posts searching for a path in this scary new world.  And additionally I am so touched to receive these personal responses as my family starts our trip down that beanstalk.  

    Paul, re: the feeding tube, his oncologist recommended a G-tube and the surgeon we met with also recommended it for ease of use, and said it does not interfere with her surgical approach at all.  However, apparently DH's stomach and colon are located in an odd place under ribs such that they could not safely place the tube during the procedure.  They said they will need to do it in the hospital under CT scan.  A disappointing end to a very long week as he had to go under anesthesia (for the fourth time in a week and a half) and have his stomach filled up with air for nothing!  We were both so sad going into the procedure in the morning.  So it was a surprise to find out that the only thing worse than waking up with a feeding tube... was waking up WITHOUT a feeding tube!  

    They had originally scheduled it for this Wednesday but I called the oncologist's nurse and begged her to find someplace else that could do it sooner, and she did.  He is so incredibly hungry and thirsty and losing weight so fast due to the low rate of liquids going down.  I can't stand to see it and thought there was no reason for him to continue suffering for 5 more days like this when we could at least do this.  Oh well... hopefully we will be able to get it done this week.  We see the oncologist again tomorrow and I will be pushing for a date.  

    The surgeon we met is very experienced with MIE and says she regularly sends her patients home swallowing liquids on day 5.  She definitely inspired confidence... she is the only person we met this week that I would say I would trust enough to let her do her thing and not second guess every step.  Which is saying a lot as that is my way!

    Feedback on pluses and minuses of going for the trial very much appreciated.  The immunotherapy drugs have so many incredible success stories that I at least want to explore the option.  I will keep you all posted as we move ahead.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited April 2017 #6
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    Magicbeans~How many beans have sprouted? Where did U plant them?

    Hello again “MagicBeans”

    Your letters of April 2 and April 3, 2017, required some intense research.  You told us of several appointments you were planning to make relative to your husband’s recent diagnosis of Esophageal Cancer, Stage III.   You spoke highly of the surgeon at Georgetown.   Would her name be Dr. Blair Marshall, Chief of Thoracic Surgery at MedStar Georgetown University?

    Here is an 18-minute video in which she explains what Esophageal Cancer involves.  She stresses the Ivor Lewis Minimally Invasive Esophagectomy.  When I listened to her video, I was impressed.  As Dr. Marshall points out, some older surgeons have not updated their skills, and prefer to perform the “open” (TransThoracic Esophagectomy – Ivor Lewis).  But, the patient’s comfort and recovery should be the primary concern, therefore the MIE with small band-aid size incisions is preferable.  So based on the assumption that she is the surgeon with whom you and your husband consulted first, here is that video link.  And the rest of my letter will have links as well. 

    1. https://www.youtube.com/watch?v=A3vC3hy8XYw

    _____________________________________________________________________

    Here is a testimonial from a patient re Georgetown and Esophageal Surgery.

    2.  https://www.medstargeorgetown.org/2016/11/10/removing-esophageal-cancer-without-cracking-the-chest/#q={}

    _____________________________________________________________________

    By now you have had an appointment with Johns Hopkins.  You will be interested to know that they rank #3 nationwide relative to Gastrointestinal and GI surgery.  Incidentally the hospitals will have different ratings for different kinds of specialties.  That’s why it is so important to go to a hospital where multiple Esophagectomies are performed.  And I would personally stress the MIE.  The larger the volume, the more experience hospitals have with difficult cases, and the MIE is major surgery, believe me.

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

    Since reading your letter of April 2 and April 3, 2017, I did some additional research relative to the clinical trial you mentioned.  You told us about your upcoming appointments, and the scheduled visit to Sloan Kettering on April 11, 2017 re the “clinical trial.”  To be honest, my husband and I both came to the same conclusion as to what we would do if we were in your shoes.  We came to the conclusion that “A bird in the hand is worth 2 in the bush.”  We say that after researching this clinical trial for Durvalumab.   No conclusions have been reached—no study results have been posted.  At this early stage, it has not been proven to be better than the standard treatment for Esophageal Cancer patients.   And with a Stage III diagnosis, time is of the essence.  According to the “Clinicaltrials.gov” reference for this clinical trial, no definitive results will appear before November of 2018.

    So by now, I suppose you’ve planted all your magic beans.  We will all be anxious to know “how many have sprouted”.  We care about everyone that writes here, and we certainly want you to give us a progress report when you have the time.  Knowing how hectic this time in your life is, you may not be giving us an answer right away, but we’re praying that you will make the very best decisions possible, and that you’ll be writing here 14 years later telling us about how your “garden grew”!

    Praying for all the best for you and your husband and your twins,

    Loretta (& William)

    _____________________________________________________________

    The references below cover info about feeding tubes, minimally invasive surgery, and the clinical trial you told us about. 

    I know you are not considering going to the West Coast for surgery, but I’m sending you a video by Dr. Ninh Nguyen—an extremely gifted young thoracic surgeon who actually worked with Dr. James D. Luketich back when Dr. Luketich pioneered the Ivor Lewis Minimally Invasive Esophagectomy (MIE) in the mid-90s at the University of Pittsburgh Medical Center.  (UPMC)  Dr. Nguyen now operates out of UC-Irvine in California.  So strictly for the purposes of instruction this video will let you see exactly how the laparoscopic MIE is performed.  It’s about 45 minutes.  Now at first you might get a bit “queasy” when seeing all those tools moving around inside the abdominal and chest cavity, but it’s how the GIANT is slayed!

    5.  https://www.youtube.com/watch?v=hx4hS21AbuI

    “Minimally Invasive Esophagectomy featuring Ninh T. Nguyen, MD, Professor of Surgery Chief, Division of Gastrointestinal Surgery, University of California, Irvine Medical Center (SDMK13CD0800259)”

    ____________________________________________________________________

    While I have several videos on file relative to the different Esophagectomies that can be performed, MIE is the “King of the Hill”.  I prefer this particular video because of the way Dr. Nguyen explains what is taking place during the MIE.    

    Interestingly, in the introduction to the operation (excerpts) Dr. Nguyen specifically states that this patient has a Gastrostomy tube and he does NOT like for his patients to have a Gastrostomy tube (G-tube.)

    In your letter, you were disappointed that your husband had not yet been able to have a feeding tube inserted and he was losing a lot of weight.  Even though the J-tube is preferable, if I were in your shoes at the time, I would not have quibbled about which kind as long as my husband had some immediate help with nutrition. 

     Dr. Nguyen says that prior to performing the MIE, he has to remove that “G” tube.  Insertion of a “J” tube is part of the surgical procedure of the MIE.  So when possible, it’s best to start with the J-tube to begin with.  It’s my understanding that the G-tube can actually be put in place “bedside” by a trained nurse, whereas the “J-tube” insertion is an operating room procedure. 

    Here is a video with a doctor narrating an instructional video on how a G-tube should be inserted into the stomach.  Now you will understand why Dr. Nguyen states in his video that the presence of a G-tube makes his surgery more difficult.  He states that it must be removed before he can proceed with the MIE procedure which involves the insertion of a “J-tube”.  However, no doubt by this date, April 12th, your husband has some kind of a feeding tube in place.  So this reference will probably be “out of date” for you.  Surely your husband has been able to have some nutrition to give him strength by now.  I can certainly understand the urgency of a feeding tube insertion!  Since other patients may follow postings on this forum, I will leave this information in for the benefit of anyone considering feeding tubes.

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    6.  https://www.youtube.com/watch?v=09UxdjLVAvE

    Here is an animated link describing how doctors insert a “Gastrostomy tube into the stomach.” 

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    7.  https://www.youtube.com/watch?v=YjkZ6mQJ4JU

    However, since it appears your husband’s “T3” status will make him a viable candidate for an Esophagectomy, a “J” tube is preferable.  Your husband needs to be strong for the chemo/radiation pre-op (neo-adjuvant) treatments.  All or part of the diseased Esophagus will be removed.  The stomach will be “spliced in a certain fashion” and elongated to make a new “gastric conduit”.  The J-tube is critical to the recuperation of the patient.  The reason being, there is no possible way that one can begin a normal eating pattern immediately following surgery.

    As I’ve often stated before, my husband’s first meal consisted of 2 tablespoonsful  of Cream of Wheat.  Moreover, liquid intake is critical, but should be done between meals—not with the meal.  But we’ll “climb that part of the beanstalk” when we get to it!

    Furthermore, as for liquids, a Barium swallow test will be conducted prior to the patient’s release from the hospital to ensure that there are “no leaks” in the new gastric tube.  So you might want to ask the surgeons about what percentage of leaks occur based on the number of esophagectomies that he or she performs.  This is a critical factor.  My husband’s diet consisted of ice chips till Day 4 when he was given a small amount of liquid to drink in preparation for the test.  Passing the leak test is a “beat-the-Giant” day and is to be celebrated! 

    Relative to the “J-tube” here is more information.  Here is a link detailing the use and care of a J-tube.

    _____________________________________________________________

    8.  https://medlineplus.gov/ency/patientinstructions/000181.htm

    Jejunostomy feeding tube

    A jejunostomy tube (J-tube) is a soft, plastic tube placed through the skin of the abdomen into the midsection of the small intestine. The tube delivers food and medicine until the person is healthy enough to eat by mouth…”

    Now I’m moving on to a different part of the beanstalk here.  These are some instructions on what to do upon discharge from the hospital.  It references the J-tube.  There is good information on the side bars as well.

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    9.  https://medlineplus.gov/ency/patientinstructions/000241.htm

    “Esophagectomy – discharge

    The esophagus is the tube that moves food the throat to the stomach. You had surgery to remove part, or all, of your esophagus. The remaining part of your esophagus and your stomach were rejoined.  If you had surgery that used a laparoscope, several small cuts (incisions) were made in your upper belly, chest, or neck. If you had open surgery, larger cuts were made in your belly, chest, or neck.

     What to Expect at Home

    You may have a feeding tube for 1 to 2 months after surgery. This will help you get enough calories to help you gain weight. You will also be on a special diet when you first get home.  Your stools may be looser and you may have bowel movements more often than before surgery…”

    __________________________________

    10.  http://www.pat.nhs.uk/downloads/patient-information-leaflets/gastroenterology/152 Having a jejunostomy feeding tube.pdf

    “Having a Jejunostomy Feeding Tube (Surgical Jejunostomy) This information will help you to make the decision about whether to have a jejunostomy tube…

    What is jejunostomy feeding? A jejunostomy tube is a small polyurethane tube which is inserted into your jejunum - the beginning of your small intestines, just below your stomach. Jejunostomy feeding is a safe and effective method of giving liquid nutrition, fluid and medicines to people who need to be fed in a way that bypasses the stomach…”

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    11.  https://www.merriam-webster.com/dictionary/anastomosis

    The place where the new gastric tube is rejoined is called the “anastomosis”.  An anastomotic leak is a serious setback and must be attended to immediately.  You will hear this word used often along with the word “gastric conduit or new gastric tube.”

    Here’s the link for a definition and pronunciation.  There is also a small “audio” symbol so one can hear how it is pronounced.  That sure helps me.

    ________________________________________________________________

    12.  http://www.healthline.com/human-body-maps/stomach/maleHere is a fascinating and instructional map of the entire body. Simply key in any part of the body you wish to explore via 3-D visual.  You can move the bar on the bottom of the block and you can view the body part from any angle.  On the left hand side of the map will be a description of the purpose of that particular organ.  Since the J-tube is inserted in the 2nd section of the Small intestine (Jejunum), you can see that this is where that tube would be inserted as opposed to the insertion of a “G-tube” in the stomach.  Just key in the word in the search bar that you’re interested in and that area of the body will be shown.

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    Lastly, remembering that you asked for “advice”, I have to reiterate that I am not a doctor and I “don’t play one on TV”.  WinkBut I have done a lot of research on my own Stage IV cancer, and my husband’s Esophageal Cancer.  That is why I try to only provide references from reputable sources to substantiate what I say.  And then, after all, this is a forum where patients, family and friends can share their stories, and exchange comments.  So any statements I make regarding medical treatments should always be confirmed and discussed with your medical team.  I’m certain you understand that, but lest I be charged with disseminating medical advice, everyone should know that my personal comments are just that.  And if you find them to be helpful, then my mission is accomplished. 

    You said in your letter that you would be having an appointment at Sloan Kettering on April 11, 2017.  So by now, April 12, 2017, you have probably narrowed your choices, and reached some conclusions.  I, for one, would be eager to learn of your decisions. 

    Based on the info you gave us, Relative to the clinical trial at Sloan Kettering regarding the immunotherapy drug Durvalumab, at this point the trial is very early and has produced NO conclusive evidence that it excels the STANDARD treatment of care approved by the FDA for Esophageal Cancer patients.  While EC can be a deadly cancer, and often is, there are survivors. Every time my husband and I read about another person being diagnosed with Esophageal Cancer, we immediately pray they will be a survivor.  The patient’s stage of cancer will determine the treatment options. 

     So “MagicBeans”…using the beanstalk analogy, since you asked our advice, neither my husband, nor I, would venture that far out on a limb.  We say, “A bird in the hand is worth 2 in a bush!”  In this case, the “bird in the hand is the standard treatment” and the “two in the bush” are still flying around and not sure where they will land.  But that decision is certainly yours to make, and we respect that.

    In my research, I see that there are 30 different Durvalumab clinical trials being conducted for many types of cancer.

    ________________________________________________________________   

      13.  https://www.mskcc.org/cancer-care/clinical-trials/16-1405

    A Phase I/II Study of Durvalumab and Chemoradiation before Surgery for Esophageal Cancer

    Full Title - IIT: Pilot Phase Ib/II Study of Durvalumab (MEDI4736) and Chemoradiation for Esophageal and Gastroesophageal Junction Adenocarcinoma

    Purpose - The purpose of this study is to assess the safety of adding the investigational drug durvalumab (also called MEDI4736) to chemoradiation using two standard chemotherapy drugs, carboplatin and paclitaxel, before surgery in patients with cancers of the esophagus or the junction between the esophagus and stomach (gastroesophageal junction). The medications used in this study are given intravenously (by vein).

    Eligibility - To be eligible for this study, patients must:

    1. Have operable esophageal or gastroesophageal cancer.  Have not had prior chemotherapy.  Have an ECOG status of 0 or 1.  Be age 18 or older.  For more information about this study and to inquire about eligibility, please contact Dr. Geoffrey Ku at 646-888-4588.

      Protocol 16-1405 – Phase Pilot- Investigator Geoffrey Y. Ku - Co-Investigators - Abraham J. Wu Pari Shah Daniela Molena  Disease - Upper GastrointestinalEsophageal Cancer - Locations - Memorial Sloan Kettering Memorial Hospital

      ClinicalTrials.gov Visit ClinicalTrials.gov for full clinical trial description

      ________________________________________________________

    2. 14. https://clinicaltrials.gov/ct2/show/results/NCT02962063

    “…Durvalumab, an Anti-PD-L1 Antibody, and Chemoradiation Before Surgery for Esophageal Cancer

    This study is currently recruiting participants. (see Contacts and Locations)

    Verified December 2016 by Memorial Sloan Kettering Cancer Center…

    No Study Results Posted on ClinicalTrials.gov for this Study

    About Study Results Reporting on ClinicalTrials.gov

      Study Status:

    This study is currently recruiting participants.

      Study Completion Date:

    No date given

      Estimated Primary Completion Date:

    November 2018 (Final data collection date for primary outcome measure)

     

    __________________________End of references_______________________

     

  • Magicbeans
    Magicbeans Member Posts: 4
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    Possible peritoneal metastases

    Hello all,

    All of the advice you have given is so greatly, greatly appreciated and needed!  A million thanks and I wanted to give an update for those interested.  It has been a really crazy time.  Yes, Loretta, we did meet with Blair Marshall and she is even better in person!  I think she would do a great job with this surgery.

    DH had a G-tube placed... I know many here and elsewhere recommend the J-tube but Dr. Marshall convinced us that the G-tube was preferable to her.  She says she regularly sends patients home with no feeding tube at all, so was not concerned about needing to place a different tube during the surgery.  That lined up with what the local oncologist wanted to do, so we went for it.  The second try worked and DH has been eating and drinking via tube for a week and a half now.  He looks and feels so much better and gained back a few pounds.  Definitely the right move for us, as he is completely blocked and can't even swallow saliva right now.

    Our day at Johns Hopkins was really impressive and convinced us both of the enormous difference to be found in a treatment center with EC specialists.  We were blown away by the understanding and compassion of the staff there and the doctors' expertise.  The surgeon there was a big believer in the old school open surgery approach.  This was a 180 degree difference from Dr. Marshall but he certainly was able to explain a reasoning that made a lot of sense.  But at the same time, we had scheduled an appointment to be seen by a team at Sloan Kettering and discuss participation in the immunotherapy trial I mentioned.  So off to New York we went.  That appointment was last Tuesday.

    We were scheduled to meet with the lead oncologist running the trial, and also with the radiation oncologist on the trial.  Meanwhile someone must have thought it would be a good idea for us to meet with a surgeon as well, so an appointment was added to the schedule for the day... first, before the other two docs.  The strange thing was that the appointment was with a gastric cancer surgeon, not listed on the esophageal group's page.  I figured that someone was trying to be helpful and it was no big deal to have this extra meeting but I doubted this would be the person ultimately doing DH's surgery.  No other doc we have met with so far has even mentioned gastric cancer.

    We got into the meeting and the surgeon started discussing a completely different treatment paradigm from what I had been reading about for EC.  Because, obviously, stomach cancer has a different standard treatment.  Then she said she wanted to do a laparoscopy.  I had not read about anyone doing that ever for EC so at this point was completely thrown off.  But the nurse came in and starts scheduling it up so we were kind of going with the flow.

    Then met with oncologist running the trial.  He agreed DH was probably a great candidate and mentioned wanting to do another EUS.  At that point I told him about our other meeting and the surgeon wanting to do a laparoscopy.  DH has been under anesthesia for 5 procedures in 2 weeks, so at some point it starts seeming a little excessive.  I asked if they could at least schedule both to happen at the same time so he only goes in once.  Also, why do we need a laparoscopy at all?  He naturally seemed reluctant to dismiss the idea after his colleague had recommended it.  Hemmed and hawed a bit about more information being good but would not say we didn't need to do it.  So we went along. Meanwhile his office scheduled the rest of the pre-trial labs and we went in on Friday to sign the papers to enter.

    The laparoscopy was Saturday.  When they came out to the waiting area to call my name, the doc wanted to see me in a separate small conference room.  Then a nurse counselor came in before the doc so I would not be alone to listen to the doc!  Very scary setup.  The doc came in and said she had seen a couple of "tiny spots" on the peritoneum that were of interest and she had taken biopsies.  By then I had read enough (from questioning the laparoscopy) to know very well what that might mean.

    Now everything is on hold until we get those results.  Maybe tomorrow, maybe Wednesday.  Meanwhile I have been extensively reading about peritoneal carcinomatosis, CRS, HIPEC, etc etc. and hoping that we will just be able to enter the trial and treat for EC as planned.  It seems that peritoneal mets are much more common in gastric cancer which is why the laparoscopy is part of the staging for that.  I have read that they don't do it in EC because it would turn up positive <5% of the time.  Praying that we are in the 95% side of that number.  We did find out that the tumor is gastroesophageal type II... exactly in the middle of the junction.  The surgeon said we would definitely need a thoracic surgeon if/when we get to that point.

    More news soon.  Hopefully good news!  If the biopsies come back negative we will start treatment on Wednesday.

     

  • paul61
    paul61 Member Posts: 1,392 Member
    edited April 2017 #8
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    Hoping for "benign" biopsy results

    Wow!! The two of you have certainly had a very busy and information packed week. It sounds like you have done your research very thoroughly and talked to all the right people. My esophageal cancer tumor was also right in the middle of my gastroesophageal junction in fact the radiologist who read the scan commented that it was unclear if the tumor had originated in the esophagus or in the cardia of the stomach.

    I had the traditional “open” Ivor Lewis surgery, and some of the unpleasant complications. So if I had it to do over again; I would find someone who felt they could do a good job with the newer minimally invasive laparoscopic approach. There are lots of survivors out there who have had good results with minimally invasive surgeries.

    It sounds like you are in a bit of a holding pattern until the peritoneum biopsy results come back. I will be sending prayers for benign results. It is always difficult waiting for test results, something that unfortunately those of us who are survivors live with.

    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
    Seven Year Survivor

     

  • Magicbeans
    Magicbeans Member Posts: 4
    edited April 2017 #9
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    Good news... negative biopsies

    We got the call around closing time today.  The pathology report was good and we are all set to start treatment tomorrow!  First time I have breathed in days.  If all goes according to plan he should start chemo/radiation right after Mother's Day and surgery early August.  Hoping and praying he is a good responder!

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
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    Magicbeans~Looks like some beans are taking root~good news today

    Hello again ~ You had me worried when you started mentioning the words "Peritoneal Carcinomatosis"--that really would have been a game changer!  You know that's the "neck of the woods" where I live.  So this good news is a great relief.  Smile

    Keep the faith, take the long look, but make the most of each day God gives you.  We rejoice with you today.

    Love & prayers,

    Loretta

     

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
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    Great to Hear

    Hello,

    Great to hear your news.  I hope hubby's treatment goes well and he has a great response.  Keep us posted.

    Best wishes,

    Ed

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
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    Magicbeans~Crop should B N by now~How was the harvest?

    Well hello Magicbeans-

    It's late August now.  One more day and September will be here.  How did your garden grow?  We sure would like to know how things progressed for your husband.  You told us that you anticipated chemo/radiation would begin right around Mothers' Day, and then surgery in early August.  Now we know caregivers are always busy, but we’re “bean counters” too, you know.  We are left to wonder what on earth happened?  Was the neo-adjuvant and surgery possible?  What kind of chemo was administered?  Which doctors did you choose?  Did Dr. Marshall perform the MIE? 

    In other words, we think the “harvest” should be “in” by now, and we want to know about the “crop”.  Was it bountiful—that would mean “successful”?  If so, let us know.  If not, let us know please.

    Eager to know,

    Loretta aka EC Bean Counter Wink

  • helpingsisinlaw
    helpingsisinlaw Member Posts: 6
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    I would like to know which

    I would like to know which doctor you chose as well.  My bil went to Dr Battafarano yesterday and he favors the open IVor Lewis due to his very low anastomic leak rate.  He claims the trans hiatal approach that most surgeons use has a higher leak rate and his is only 4/152 or so.  He does a longer surgery and keeps patients in for 2 weeks.  We were blown away by the completely different approach.  Please update us on your husbands progress.

    Sending blessings your way