Husband 50, diagnosed with Stage IIb adeno

sherdave
sherdave Member Posts: 3
in Esophageal Cancer #1

Hi everyone,

I have been reading a variety of online blogs and groups since my husband was diagnosed last month, but found this site today and it is REALLY helpful. I have already saved a few of your posts, thank you to all.

My husband presented with two episodes of choking on food, and luckily he was already scheduled for a routine colonoscopy (for turning 50!) so he asked them to also do an uppper endocscopy. The tumor was found, it is at the GE junction and in one nearby lymph node. He has started chemo with Dr. Manish Shah at Cornell who is terrific. He is getting epirubicin, cisplatin and xeloda in 3 week cycles, with the plan to have surgery after 3-4 rounds, then more chemo after surgery. 

We have visited a number of surgeons in NY, as many people recommend doing the surgery locally. Do any of you have experience with NYC surgeons that you can share? It seems like such a huge decision.

Thanks!

Sheryl

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    Picking your surgeon and surgical approach is VERY important

    Hello Sheryl,

     I am sorry that you find yourself here looking for answers for your husband. I was also diagnosed with esophageal cancer Stage IIb, at the gastro-esophageal junction, adenocarcinoma. I had the same chemotherapy regimen your husband is having (I had 5 FU and xeloda is the tablet form of that same drug structure).

    I am blessed to be able to say that I am still here six years after diagnosis with clear scans since my surgery was completed.

    Now, on to the topic of surgery.  An esophagectomy with gastric pull up is a complicated MAJOR surgery. Who you pick for your surgeon and where you have the surgery done is VERY important. Being in New York you have access to a wide range of surgical options and facilities but be sure you qualify your surgeon and the recovery facility based on the type of esophagectomy he does, how many he does, and the success rate of the recovery facility in which he practices.

    You probably have been informed that there are three primary approaches to the surgery your husband will have.

    The major approaches include:

    First the traditional Ivor Lewis (IL) approach. In this approach two large incisions are made. One in the abdomen between the belly button and sternum and one from just under the right shoulder to the middle of the patient’s back. The abdominal incision is used to release the stomach so it can be modified and moved higher to be connected to the remainder of the esophagus. The back incision is used to enter through a space in the ribs to remove a section of the esophagus and form the new connection between the remainder of the esophagus and the remainder of the stomach.

    Many surgeons around the US perform this surgical approach.

    This approach is the most invasive of the approaches and typically has the longest recovery time. I had this particular surgery and I was in the hospital for 12 days. The original estimate was 10 days but I got an infection in my incisions and was there an extra two days while they gave me IV antibiotics.

    Second the Transhiatal Esophagectomy approach. In this approach a large incision is made in the abdomen between the belly button and sternum and a smaller incision is made in the patient’s neck. The abdominal incision is used to perform the same functions as in the IL approach described above. The incision in the neck is used to remove a section of the esophagus and to form a new connection between the remainder of the esophagus and the remainder of the stomach. A more detailed description can be found at http://surgery.med.umich.edu/thoracic/clinical/what_we_do/esophagectomy_faq.shtml

    Dr. Mark B. Orringer at University of Michigan Medical Center is a leader in this surgical approach.

    The in hospital recovery time for this approach is shorter than the IL approach and the recovery time is somewhat shorter.

    Third the Minimally Invasive Esophagectomy (MIE) approach. In this robotically assisted approach a number of very small incisions are made in the abdomen and in the neck. The surgeon uses the robot “arms” and cameras through the small incisions to release and modify the stomach, remove a section of the esophagus and a section of the stomach and re-attach the remainder of the stomach and esophagus. A more detailed description can be found at http://www.upmc.com/media/NewsReleases/2000/Pages/minimally-invasive-approach-esophagectomy-lower-morbidity-quicken-return-daily-activity-upmc-surgeons-report.aspx

    Dr.  James D. Luketich at University of Pittsburgh Cancer Institute is the leader in this surgical approach.

    The in hospital recovery time for this approach is the shortest of the approaches and the recovery time is shorter as well.

    There are a number of reasons why a surgeon may recommend one approach over another. The area around the esophagus has a number of lymph nodes connected into the lining of the esophagus and frequently a number of these are removed to insure a clear surgical margin around the cancer and for pathological examination to validate the staging done prior to surgery. In some cases, prior surgical scar tissue and other medical issues may dictate one approach over the other.

    Be sure you understand your surgeons reasoning for selecting one approach over the other. “I don’t do that approach” is not the answer you are looking for. This is MAJOR surgery and you want to have a surgeon that does MANY of these surgeries a year.

    When I had my surgery I did not even know an MIE was available. Given my experience, if I had it to do over again I would have traveled to a major cancer center and found a surgeon who is competent in MIE.

    Of course you need to be comfortable with your surgeon and insurance is sometimes an issue. But I wanted to you be aware that there are choices and you should make an informed decision.

    I did not have my surgery done locally I traveled to a large cancer center, about as far as from where you are in New York to Pittsburgh where UPMC is. It may be worth some investigation.

     Wishing both you and your husband the best,  

    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
    Five Year Survivor

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    #3
    Sheryl-What? Where? When? Life-altering choices U2 must make!

    Hello Sheryl:

    Pull up a comfortable chair and we’ll have a chat.  To those of us familiar with Esophageal Cancer, your husband’s story is all too familiar.  However, anytime Esophageal Cancer has NOT advanced to Stage IV, a lesser stage is still the best of a bad situation.  We also had a friend that also went to the doctor for a routine colonoscopy.  Being a hospital administrator he asked his physician friend to also do an Endoscopy since he was “already there.”   He had no symptoms to make him think that anything was wrong.  The outcome—Esophageal Cancer Stage I.

                 Our friend had several physicians that he then consulted to ask “Where is the best place I could go for treatment?”  The overwhelming answer was Dr. James D. Luketich at the University of Pittsburgh Medical Center.  Subsequently, he went there, and was a candidate for the Ivor Lewis Minimally Invasive Esophagectomy.  That was years ago and he is still doing well the last time we spoke.  Now that’s not to say, that all EC patients will do “just fine”, but we must point out the successes to offset the news that is not always favorable. 

    Paul has given you an excellent mini-review of the types of surgeries available today.  The things I have to say will add to that.  Indeed this is major surgery and life-changing, but even though adjustments will be made “staying alive” is the name of this song! 

    After I read your letter, I did a bit of research on your husband’s current doctor, Dr. Manish Shah.  Here are two links that let me know that the hospital does perform the Ivor Lewis Minimally Invasive Esophagectomy.  So I will list those 2 here, and then move on to what I would recommend if you were at a place where the MIE is not performed. 

    Still I would want to know the “success record” from the surgeons there who do perform the MIE.  How many do they perform a year?  Have you spoken with any of the patients and asked about their progress?  Some thoracic surgeons have far more experience than others, and I would prefer one that can do the operation in his sleep!  I wholeheartedly go along with Paul’s recommendation about the MIE.  He suffered several complications that came along with the Open Ivor Lewis Esophagectomy that he had.  He had some major incisions.  Furthermore, he had some residual cancer in some of the lymph nodes tested during surgery, and had to have post-op chemotherapy.  That’s one big advantage between laparoscopic and open surgery.  MIE patients recover faster, and if post-op chemo is needed, they are in far better shape physically to withstand the rigorous routine that is involved with chemo.  He’s had a tough time, but now is finally enjoying the fruits of his “endurance” and seeing it through.  He has lots of good advice. 

                If you should contemplate going elsewhere, the University of Pittsburgh has 4 family homes at which family members may stay as long as they need to.  Reservations can be made if you should decide to change surgeons.  And now Dr. Luketich has modified his surgical procedure since my husband’s surgery.  Now the incision to remove the diseased Esophagus is removed further down in the chest on the right hand side.  He no longer makes the “neck” incision.  This avoids damage to the delicate Pharyngeal and Laryngeal nerves in the neck area.  So it would be interesting for you to ask the surgeon if he makes a “neck” incision or a “chest” incision to remove the Esophagus.  Sometimes one’s voice can be affected if the nerves are damaged.  So the one small “chest” incision is an improvement.  The rest of the incisions were 1-inch & covered with a band-aid.  My husband has “no” scars.  Thankfully my husband’s voice did not change. 

    Cancer of the Esophagus - Dr. Manish A. Shah -

    New York-Presbyterian Hospital - Uploaded on Nov 23, 2011 (3.56 min.)

    Manish A. Shah. M.D., the Director of Gastrointestinal Oncology at New York-Presbyterian/Weill Cornell Medical Center in New York City, explains the intricacies of esophageal cancer and elaborates on the treatment of this disease.

    Esophageal Cancer: Diagnosis, Treatment and Recovery

    New York-Presbyterian Hospital - Uploaded on Nov 17, 2011 -  (10.31 min.)

    Sheryl, normally, this would be some of the advice I would write to a “newbie” writing here for the first time.  So apart from the fact that this hospital has staff trained in the latest laparoscopic procedures, often a patient writing here has no idea of the questions to ask or the capabilities of the medical facility where they are currently being treated.

    It would help if we knew how much research you had already done.  Have you had a 2nd opinion?    Dr. Luketich does not require a referral.  We simply called UPMC and set up an appointment.   

    That would be my first recommendation.  Many people are afraid to ask questions, and will just remain with the first doctor to whom they are referred. NOT SUCH A GOOD CHOICE.  Esophageal cancer is a rare cancer, much rarer than Breast Cancer incidentally.  So my first recommendation would be to seek a SECOND Opinion at a major medical hospital that specializes in Minimally Invasive Esophagectomies.  That institution can either confirm your first diagnosis, or suggest alternative medications and/or treatments.  It gives great peace of mind.  We were scheduled to have the OPEN Ivor Lewis which has 2 massive incisions.  Ten days prior to having that surgery here, we learned about the MIE.  The studies are in and this procedure wins hands-down.  In your case, you may be well off where you are, if you don’t want to travel elsewhere, and you’ve researched this hospital thoroughly.  You need to be totally convinced of what your husband is about to do.  You could call UPMC and ask if Dr.Luketich has trained thoracic surgeons in New York that he would highly recommend.  They would be happy to make a recommendation. 

              Since we have had such great success with Dr. James D. Luketich, pioneer of the Ivor Lewis Minimally Invasive Esophagectomy, naturally he will always be our first recommendation. Sometimes people don’t know where to turn, and are afraid to ask questions.  This method will provide the most frustration and surprises.  Being the realist that I am, I always like to ask questions first and then make a decision.  You need to be comfortable with the decisions you are making because you understand them, not just because “someone” suggested something.  (That is unless they are expert in the field of Esophageal Cancers.)  “Close by” should not be the first pre-requisite.  “Who knows the most about this cancer, and can I get in touch with them?” would be my first question.  (That is after I learned how to spell and pronounce ESOPHAGEAL and ENDOSCOPY!)

              Okay Sheryl, I am going to share with you an outline of my husband’s treatment.  Then I am going to share with you a letter written by one of the smartest ladies (yes smarter than HC), named Sherri.  She isn’t posting here presently but we have had innumerable conversations and shared articles with each other pertaining to Esophageal Cancer.  Her husband was 48 when he was diagnosed with Esophageal Cancer Stage IV.  He lived 2 years by the grace of God and her expert research and care.  I called her my “on-line” doc.  When I spoke to her last night, she said, “You have my permission to share anything I’ve written that you think will be helpful.”  She’s still busy interacting with EC patients and/or their surviving family members in various ways, but having 3 children to raise is always her first priority.

              So first – here is a brief outline of my husband’s treatment schedule.  He was in and out of the hospital in 5 days, and downtown shopping with me on Day 8, and I have pictures to prove it!  He also had a “J” tube inserted during the surgery.  That’s vital for sustenance since the food intake will be minimal for quite some time.  It will naturally result in some weight loss, but one can regain some of the lost weight eventually.  It took about 9 months before my husband’s body found its ideal weight. 

          His “neo-adjuvant” (Pre-op) treatment consisted of Carboplatin and 5-FU via a medi-port, together with 25 sessions of radiation.  At the completion of this pre-op treatment, the cancer had been totally eradicated.  However, surgery was still necessary to be certain that no cancer was left in his body.  During the MIE surgery 23 lymph nodes were removed for pathological testing.  Having detected no residual cancer in any of those lymph nodes, NO POST-OP chemo was recommended.  Now if there is residual cancer found in any of the nodes removed for testing, then post-op chemo would be necessary.  It only takes one to divide and make 2, then 2 divide and make 4, those 4 divide and make 8, etc.  The progression is rapid.

             And one word you will hear often when surgeons are talking is “anastomosis”—that’s where the organs are rejoined after the diseased Esophagus is removed and is often referred to as the new gastric tube.

              You didn’t mention if your husband had been tested to see if he is HER2 positive.  That would indicate that he has an overactive cancer cell that causes increased/uncontrolled cell proliferation.  It divides more rapidly than others.  There is a separate drug called HERCEPTIN (not a chemo drug) that is given for those patients. 

    HER signaling: Targeting a critical receptor family

              I note that your husband is taking Xeloda—that is the pill form of 5-FU which my husband had as part of his infusion treatment. My husband has now entered the 14th year of remission with no evidence of disease (NED).  We are truly blessed. 

                      WILLIAM’S TREATMENT SCHEDULE WAS AS FOLLOWS:

    ·       Week 1 ~ (02-10-03) Chemo 96-hr. continual infusion of Carboplatin/5-FU (Fanny pack)

     ·       Weeks 2, 3, and 4 ~ (02-17-03) 5-day-a-week radiation treatment.  (No Cyberknife equipment (no targeted radiation) in this area in  2003,  but now we do have one in our Tidewater area.)

    ·       Week 5  ~ Combination radiation plus SECOND chemo continuous 96-hr. infusion  (Fanny pack)

     ·       Week 6 ~ (03-17-03) Final week of radiation.

     ·       Repeat PET Scan on 04-28-03 ~ results - COMPLETE ERADICATION OF TUMOR in the Esophagus  & lymph nodes 

               Surgery was scheduled approximately 3 weeks later after successful pre-op treatment.  Radiation does cause scar tissue, so the sooner the surgery after the pre-op treatments—the better.  Chemotherapy has a residual effect of up to 3 weeks after each infusion, thus the surgery was scheduled after the optimum effect had been reached.

    Now here’s an introduction to all “newly diagnosed” Esophageal Cancer patients from my dear friend Sherri.

    “FOR THE NEWLY DIAGNOSED

    You are about to enter the roller coaster from Hell.  Unfortunately, you don't have time to feel sorry for yourselves.  You must move on to fight the beast.  Whether you are stage I or stage IV, only believe half of what is told and rely on your own knowledge of yourself or your loved one with the exception if you get a doctor who is upbeat and willing to go the extra mile for you.  Remember whatever they tell you is statistical, clinical or factual and that they don't know you as an individual.  Since coming on in June, I have read many stories where the patient or the spouse is afraid to confront the doctors or to get a second or even a third opinion.  I have also read where the caretaker is afraid to take control of the situation due to either fear or an uncooperative spouse or patient.

              Remember to question everything and anything and if the doctor doesn't like this then find another.  Remember that you are the patient and that they are working for you.  Research everything and talk about it in your appointments.  Never be frightened to ask questions.  Even better is when you are with the Onco staff, Ask then whom I may call to get immediate answers.

              Know your cancer!  Look up where it may MET to and be one step ahead with questions or clinical trials.  Don't hesitate to ask them about the HER2 Gene and has my tumor been tested?  Remember to ask about supplements that can help you while you are on chemo or radiation.  Ours allowed us to do what we wanted, especially for chemo related neuropathy.

              When you are first diagnosed, we sit their numbly, dumbfounded, afraid, intimidated, shell-shocked and can't believe what we are hearing.  Well believe it quickly, take a few deep breaths and begin the fight.  The ones that delay treatment are the ones that suffer in the long run.  Don't dwell on I should haves or I could haves, it's too late for that.  Get going on the cure or the treatment. You can still lead a productive life.  Push yourself and DO NOT GIVE UP HOPE EVER!!!  Only God knows when it is your time.  Have faith in yourselves and know that you are not alone.  We are here to answer your questions to the best of our ability.  We have been through heartache.  We have lost loved ones dear to us.  We have cried together over someone we have never met.  We are a family and you may not like what we have to say but we care and have the experience.

              You will meet people here that have experienced it all.  We have people that have been fighting for their lives all along but continue success. We have our not-a-surgical-candidate patients that have overcome their projected life spans and are doing well.  We have people that have had the surgery and have been cured or are in remission.  We have had many who have lost their loved ones but still come on to help others.  They share their experiences without a second thought.  Many give out their personal phone numbers to help some and others become great friends even though they have never met.  Just remember that you are in the right place and you will get honest, experienced answers from people who have walked in the shoes of Esophageal Cancer.

              Good Luck and Best Wishes to all of you in your fight against esophageal cancer.  There will always be someone here to answer your questions the best they know how to.  Remember that we here have had success no matter how old you are.  Our goal is to beat it now or in the future by helping others.  You are never alone! -- Sherri"

    Okay Sheryl—this will be enough for one letter, since I really don’t know how much you already know.  And as always, I have to issue a disclaimer, so as not to be accused of “treating patients online.”  Any references and statements I make should be discussed with your husband and your doctor.  I am not a doctor.  However, as a Stage IV Peritoneal Carcinomatosis/Ovarian Cancer patient, and the wife of a wonderful caregiver & loving husband William who is an EC survivor now entering his 14th year of survival, you could say “Cancer is up close and personal with us!”

    You are wise to do all the research up front and be inquisitive.  That eliminates lots of “shocking surprises.” 

    Wishing you and yours all the best,

    Loretta

    Wife of William – Ivor Lewis Minimally Invasive Esophagectomy, (MIE) performed by Dr. James D. Luketich @ the University of Pittsburgh Medical Center on May 17, 2003.

    P.S.  An encouraging article relative to pre-op treatment. 

    “Preoperative Chemotherapy, Radiation Improve Survival in Esophageal Cancer (Updated)

    Patients with esophageal cancer who received chemotherapy and radiation before surgery survived, on average, nearly twice as long as patients treated with surgery alone. The findings, from a large randomized trial of neoadjuvant chemoradiotherapy for the disease, were published May 31, 2012, in the New England Journal of Medicine.

    Patients treated with carboplatin and paclitaxel chemotherapy plus radiation prior to surgery had a median overall survival of nearly 50 months, compared with 24 months for patients treated with surgery alone…”

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