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Upcoming Surgery, best advice for support

Sloaner3
Posts: 22
Joined: Jun 2007

Hi All,

My sister has successfully completed her radiation and chemotherapy at the University of Michigan for her stage IIB esophageal cancer.  She has done amazingly well and we are so thankful.  She will have her Ivor Lewis surgery in a few weeks and I am hoping for any thoughts/ideas on what I might watch out for on her belhalf, what we can expect and any other thoughts you might be willing to share.  Her surgery is the 'open' version and will be done by Dr. Orringer who has a tremendous reputation.  Thanks in advance for your comments.  Best to all of you.

jcarol's picture
jcarol
Posts: 30
Joined: Jun 2013

My husband also recently completed his chemo/radiation at U of M and is scheduled for a transhiatial esophogetomy by Dr. Orringer on October 9. He is also feeling and doing well at this point.  (He played tennis for two hours today).  Dr. Orringer really is wonderful and we have the greatest confidence in him.  Is there a special reason that your sister is having Ivor Lewis?  Dr. Orringer and the U of M team are best known for the transhiatal version.  

Clint is keeping up with walking 3 miles (or other exercise) every day and using his inspiration spirometer to help prepare for surgery and recovery.  He had all six weeks of radiation but only four of chemo due to neutropenia, but felt quite well throughout this treatment.  We are praying for positive results and a quick (relatively) recovery from surgery but will keep our eye on the endgame.  I have made reservations to stay at the Med Inn at the hospitalf for two weeks (although I hope he will be released in a week).  I think we might stay a day or two at the Inn just so I am comfortable with taking care of him before we go home.

There is a esophogeal cancer support group meeting at U of M on September 5.  I  think Laura and Larry will be there.  We will come to the October 3 meeting.  Keep in touch.

Joan

3whitecats
Posts: 10
Joined: Aug 2013

Joan, I was delighted to read about your husbands scheduled transhiatial esphogetomy with Dr Orringer in Oct.  I am scheduled for the last Mon in Nov as I am only half way through chemo/rad at the moment.  the surgery would be performed (at least they don't say 'practiced') by Dr Whitney Burrows and would of necessity (evidently) be the Ivor Lewis variety due mainly to my age (68) and history of active heart disease.  

I have heard nothing but good things about UM's recovery team on their thorascic surgery floor.  I do not know Dr Orringer, but I also hear that the esophogetomy group is considered first rate with a good frequency of operations and good outcomes.  I found the later note in this formu on various considerations to be very good and also very consistent with cautions expressed by my second and third opinion surgeons -- they all hate that drain tube and count real recovery from the day it comes out.

In any event, please keep in touch.  We live over on the Eastern Shore and have been part of UM for many years.

PeteD   dunbarpm@gmail.com

JKGulliver
Posts: 81
Joined: Apr 2013

Your sister wants to gain as much weight back as possible and also to be in as good physical shape as possible going into the surgery.  It is not uncommon to lose 20% of your body weight after IL surgery.  Many people struggle with weight loss for a long time after surgery.

Prior to surgery, your sister should have a new PET or a CT scan.  The results should be available the same day.  Ask her oncologist to explain the report for you.  This will tell you alot about where she stands.

Help your sister to start thinking about having a different relationship to food, beverages and alcohol after surgery.  We found that mental preparation was very important.

Depending on the weather and the HVAC system in the hospital, your sister might have problems with dry lips immediately after surgery.  Bring some gloss and apply liberally.  This is a small thiing, but it just adds to the challenge of the first few days.  Her mouth may also be very dry.  

She might have a JTube put in place during the surgery.  The care of the tube will be high priority.  They are finicky, they clog and they leak.  JTube care includes protecting the skin, which will be exposed to digestive secretions when the tube leaks.  Be there for her and teach everyone who will be a caregiver after surgery how to deal with the tube.  You can ask your surgeon to refer you to an ostomy nurse.  This person was a life saver for us.  Ostomy nurses care for surgical openings all the time.  They can order ostomy supplies that are, believe me, very useful.  The one rub is that ostomy supplies are considered wound supplies, not surgical or oncology supplies.  Your surgeon or oncologist may have to prescribe them in order for them to be covered by insurance.

Your sister will sit up, get up and walk alot sooner than anyone thinks is possible.  This is all good.  Encourage her, congratulate her and help her with her walks.

Be moral support during the sessions with the NP, nurse, PA or dietician during the education sessions on eating post-surgery.  Be positive and bring ideas about what is POSSIBLE to eat.  Help foster a can-do attitude.

My husband was not really able to receive visitors until about Day 4 at the hospital.  So many people wanted to come, so communicating with them is a big deal.  

After the removal, the esophagus is biopsied intensely.  There is a detailed report giving the pathology of the cancer cells.  Ask the oncologist to go over the report with you while you are in the hospital.

Best of luck.  Larry and Laura are terrific.

 

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

I am so glad to see that Your sister is faring well after chemoradiation. Joan, I am also so glad that Clint is doing well. Following instructions is the most important thing. I cannot stress that enough. I would highly advise going to the support group on Thursday Sept 5th. What an amzing group of people that will ease your mind. True warrior survivors that dont sugar coat anything. You will learn from them how tough it is, but you will also be interacting with people that have survived and live normal lives. One man had his surgery 21 years ago. I am surprised as well as Joan that Dr Orringer would do the Ivor Lewis instead of the THE. He told us, only if there was a complication would he turn Larry over and perform the Ivor Lewis, however connection would still be done in neck. Larrys surgery took only 4 hours. He went right to thoracic floor, with an amzing team of nurses and staff. Yes he was up and walking the next morning. The family will be busy reminding patient to take deep breaths. Larry was in for 13 days due to bowel problems. My husband thinks and claims that he is the best patient, but he really doesnt follow directions much at all. He has had a difficult recovery, and I blame his non compliance. I hope to see you at the meeting. Give it a try if you can. Eat, eat, eat! Walk and breathe deep! Best of luck to you.

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

How sweet. How is everything with you?

3whitecats
Posts: 10
Joined: Aug 2013

Ha, I flagged my own post!!  thought it meant flag the chain for keeping. Chemo brain at work.

In any event it is copied below in case it gets deletec by the administrator.  I would just like to add that you posts on surgical consideeration have been excellent and have provided much food for thought.

Thanks

PeteD

Here is my self flagged post --

 

Joan, I was delighted to read about your husbands scheduled transhiatial esphogetomy with Dr Orringer in Oct.  I am scheduled for the last Mon in Nov as I am only half way through chemo/rad at the moment.  the surgery would be performed (at least they don't say 'practiced') by Dr Whitney Burrows and would of necessity (evidently) be the Ivor Lewis variety due mainly to my age (68) and history of active heart disease.  

I have heard nothing but good things about UM's recovery team on their thorascic surgery floor.  I do not know Dr Orringer, but I also hear that the esophogetomy group is considered first rate with a good frequency of operations and good outcomes.  I found the later note in this formu on various considerations to be very good and also very consistent with cautions expressed by my second and third opinion surgeons -- they all hate that drain tube and count real recovery from the day it comes out.

In any event, please keep in touch.  We live over on the Eastern Shore and have been part of UM for many years.

PeteD   dunbarpm@gmail.com

 

 

 

 

 

 

 

Sloaner3
Posts: 22
Joined: Jun 2007

Thank you for all of the good thoughts and kind words.  I think I might have been mistakenn with the Ivor Lewis thing.  She is having the one that Dr. Orringer does most frequently.  

I will continue to pray for you all and want you to know that you are all amazing and inspirational people.

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