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Need surgeon advice

MrsHudson's picture
MrsHudson
Posts: 4
Joined: Oct 2018

Good evening,

im sorry if this is on here already. I couldn’t find it when I searched. 

My husband was just diagnosed with T2N1 EC. I have worked I radiation therapy for 25 years so I’m no stranger to this disease but it’s very different when it hits home. Based on my experience, I feel he will have pre-op chemoradiation followed by surgery after a healing period. My radiation docs have been great for support and info. However, I’m learning that this is a pretty uncommon surgery and experience-surgeon and facility- is everything. I’ve googled everything I know to find the best places and surgeons. Of course, Mayo and MDA come up frequently. However, I still get no specific surgeon’s name. Not that I don’t want to go to one of these, but if there is a facility/surgeon within driving distance that has comparable experience, I would explore that too. 

Also, based on what I’ve read, proton, though not giving any different outcome, is causing less side effects and toxicities. Originally, I just figured we would do chemoradiation here at home then go away for surgery. But if the tissue sparing is this significant, I want to explore the option of finding a center that can offer us proton as well. It’s a lot to do in a short time as I don’t want to delay treatment any longer than necessary. 

So im here asking for help and info on facilities and surgeons that anyone has experience with that they were particularly happy (or unhappy) with so I can explore those options. I’ve got calls in to Mayo and MDA but I’m not against calling others. His parents are in Florida for the winter so that would be a nice option so they could be closer to him during this time. I know there are a couple there but I can’t find info on them. Any information anyone can offer would be greatly appreciated and I realize it’s all opinion and personal experience so I hold no one responsible for our experiences or outcome.

Thank you,

Tara

PaulT
Posts: 10
Joined: Dec 2017

In Florida I would have you look into Doctor Jacques-Pierre Fontaine at Moffitt Cancer Center in Tampa. He does minimally invasive and does personally 50-60 per year. He was trained by Doctor Sugarbaker and Doctor Fontaine has his own recovering floor which in my opinion is important as you are assured they have seen every possible complication from a esophagectomy. I felt from surgery to recovery I was in great hands the entire time. All the best, Paul

 
LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Dear Tara

It goes without saying that I’m sorry your husband has been diagnosed with Esophageal Cancer, but based on the Stage you have given us, unless there are other medical conditions that would prohibit surgery, he certainly is within the range that many patients are deemed to be eligible for surgery.  That’s a good thing.  Am I to assume that you live near Florida or Texas?  In any event, I can tell you that Dr. James D. Luketich practices at the University of Pittsburgh Medical Center in Pittsburgh, PA.  That may be a “fer piece” from where you live.  However, if distance isn’t a problem, then I think there is none better.  He actually is the pioneer of the Ivor Lewis Minimally Invasive Esophagectomy commonly called the “MIE”.  It is the least invasive of all the esophagectomies being performed today and has the least complications.  So wherever you decide to go, if I were you, I would inquire of the surgeon as to whether or not he has been trained to perform the latest and least invasive type of esophagectomy.  I would want to know where he was trained and how many of these surgeries he has performed.  I would want him to have done at least 25 in a year. 

Another factor to consider is the size of the hospital and how they rank in performing gastric surgeries.  The Mayo Clinic in Rochester is ranked #1 for gastric surgeries (category under which Esophagectomies fall).  This is according to the USNews World Health report.  You might be interested to know that Houston Medical ranks #12 while MDAnderson doesn’t even rank among the top 50 for Gastroenterology & GI surgery according to their report. So since you’re uncertain about the best place to go, it could be helpful for you to access their site and research the hospital and surgeon that you are considering. 

In my husband’s case, he did all his pre-op workup here at home.  Then we traveled to UPMC for the surgery.  My husband’s surgery was on May 17, 2003.  His stage was Adenocarcinoma at the Gastroesophageal Junction (Stage T3N1M0).  There were no complications and no residual cancer in any of the 22 lymph nodes removed for pathology during surgery.  He is still cancer free as of this date, October 8, 2018.  We thank the Lord for this long remission.  We would love to use the word “cure” but out of caution, we say remission instead because one never knows what might happen tomorrow.  Stage III is considered an advanced stage.

Also, I would say you are in a better position to question the doctors because you’ve worked in the radiation department for so many years.  So I’m certain you’re capable of making that choice.  It might come down to just exactly what your insurance company will pay for.  It seems that Proton is more expensive.

Lastly, seems “PaulT” has given you a good recommendation.  A doctor that does 50 or 60 MIEs a year certainly knows what it is all about.  My best advice would consider that doctor if you are contemplating being in the Florida area.  I had a dear friend whose husband was diagnosed as Stage IV and he was treated at Moffitt there in Tampa.  She was extremely happy with the way the doctors worked with her to give her husband the very best chance at life. 

So we wish you the very best.  We know how important it is to have the right physician.  Be sure to keep copies of all the medical tests and their results, and copies of any scans that are done.  You will be your very best advocate.  The more you know, the more respect I think one gets from the interaction between patient and doctor. 

Wishing you and your husband all the best on probably the most treacherous journey you’ve been on together.  The earlier the cancer is caught, the better the chances of a long life ahead.  So I hope you can quickly make a good choice and get on with the pre-op treatments.  The references I have listed below might be helpful for you.  Don’t be shy about asking questions and expect answers that you can understand.

All the best,

Loretta

(Wife of William who is now 81and still cancer free.  He was 65 when diagnosed, so there are success stories, and the survivors here are here to help.

________________________________________________ 

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

Best Hospitals National Rankings

Review the 2018-2019 best hospitals in the U.S. from U.S. News. We analyze data from nearly 5,000 medical centers and survey responses from more than 30,000 physicians to rank hospitals in 16 adult specialties including cancer, diabetes, rheumatology and more. Survival rates, patient safety, specialized staff and hospital reputation were among the factors weighed. Nationally, only 158 hospitals ranked in at least one of the specialties in 2018-19. The Honor Roll recognizes 20 hospitals for their exceptional care for complex cases across these specialties, as well as recognizes hospitals by state, metro and regional areas for their work in nine more widely performed procedures and conditions.

________________________________________________________________ 

2.     https://breast360.org/topics/2015/01/01/radiation-therapy-photons-vs-protons/

Radiation Therapy: Photons vs. Protons

______________________________________________ 

3.     https://csn.cancer.org/node/317799

“Things your doctors should B telling U & all new patients about Esophageal Cancer @ any stage”

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4.     https://www.slideshare.net/guest87d35b/minimally-invasive-esophagectomy

[My note:  This is a detailed slideshow of how a new gastric tube is made out of the stomach to replace the diseased esophagus.  Note this article is 10 years old.  Dr. James D. Luketich pioneered the Ivor Lewis Minimally Invasive Esophagectomy in the mid 90’s.  He is at the University of Pittsburgh Medical Center.  Dr. Ninh Nguyen is currently working at UCIrvine in California and worked with Dr. Luketich when the MIE was first introduced.  For those on the West Coast, I cannot recommend anyone more highly than Dr. Nguyen.  And of course, on the East Coast, Dr. Luketich, for two reasons.  He is brilliant and excellent, and my husband, William, had a totally successful MIE at UPMC in May of 2003.  William had absolutely no complications and is still cancer free today.]

_____________________________________________________ 

5.     http://www.ncbi.nlm.nih.gov/pubmed/?term=Luketich+JD%5BAuthor%5D

List of 382 medical articles by Dr. Luketich accepted by medical journals for publication.  An experienced thoracic surgeon should have written several articles accepted for publication.  This is one way you can judge their expertise.

__________________________________________________ 

6.     https://www.ctsnet.org/article/minimally-invasive-esophagectomy-0

Minimally Invasive procedures outlined

________End of references___________________

MrsHudson's picture
MrsHudson
Posts: 4
Joined: Oct 2018

Thank you for these recommendations. I will def keep them on my short list. 

I am pursuing Mayo and MDA at this time, simply because, along with their volume experience with esophagectomy they also offer proton therapy. (Unfortunately, according to my research, UPMC and Moffitt don't have that option.) That way if it is indicated for him, we can do everything at one facility. However, if proton is not recommended, we will begin our chemoradiation here at home and continue to research surgery options in the meantime. 

 

Thanks for the info and support!

Tara

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Hello again -

If I had to choose between MAYO and MDA, MAYO has the better rating for esophagectomies and they do the MIE, according to USNews Health report.   "Just saying" !

Loretta

midlandgigi
Posts: 7
Joined: Aug 2018

I had MIE in November, 2017 at MDAnderson after undergoing chemoradiation.   They have a top rating for this surgery and the Medical Center is known worldwide for cancer research.  My surgical oncologist was Reza Mehran who also  travels to Germany and Switzerland to perform surgerys.  My surgery required removal of most of my esophagus and half of my stomach.  There was scar tissue between the stomach and other organs due to the radiation so the surgery was complicated by that.  After surgery I was shocked at how well my pain was managed.  Nerve blockers were used  to help  block pain and they lasted a few weeks.  The compassionate care I received certainly played a part in my recovery.  Dr. Mehran had a weekend off while I was in the hospital and his assistant and PA both checked on me -  but he still showed up on that Sunday morning for a quick visit.   My gastic oncolongist is Dr Blum and my radiaton oncologist is Dr. O'Reilly.  All are  tops in their field.  Proton radiation is often used but because of a kidney issue I was not able to do that.  The radiation department was super.  

If you decide to go to MDA I can recommend some housing that is close and economical.  

Gigi

MrsHudson's picture
MrsHudson
Posts: 4
Joined: Oct 2018

Gigi, 

Glad to hear your good experience there. We leave tomorrow for consult at Mayo and next Tues for consult at MDA. We will make our decision after that  I really feel like we can’t go wrong at this point. 

I am interested in hearing your housing suggestions. If we end up having proton we will def be there a while  

Tara

 

MrsHudson's picture
MrsHudson
Posts: 4
Joined: Oct 2018

Loretta,

Thanks for your input. It’s a lot of info to take in at one time! I did find out that they do offer MIE  at MDA as well. So we have that option either place. That’s good to know. His PET came back neg for distant or mestastatic disease so he is still a candidate for proton. We will see if the insurance company agrees. (Insert eye roll). 

Thanks for the info and support. 

Tara

mmochnal
Posts: 2
Joined: Jan 2018

I would not be too hung up on Proton Terapy as I asked my Radiation Oncologist about it and she shared that there is no evidence that it provides any benifit over IMRT for EC. I am being treated at Sloan Kettering and cannot reccomend MSK enough, but Mayo and MDA are places that you should be %100 comfortabe with 

midlandgigi
Posts: 7
Joined: Aug 2018

The insurance companies usually deny Proton Theraphy but will approve it after the Doctor appeals the decision.    I think yu cant go wrong with wither Mayo or MDA.   MDA is a research hospital so they are constantly offering new treatments.  I am not a candidate for clinical trials because I also have  had breast cancer.  However, any new treatment options for which you qualify would be offered to you.  I also participate in three research studies at MDA and hope my participation will help others in some way.

  Gigi

midlandgigi
Posts: 7
Joined: Aug 2018

It is very hard to rent an apartment for less than 6 months in Houston near the Medical Center.  There is a coalition of six churches which provides furnished apartments for 2 weeks or more at their cost.  You pay by the week and only have to give 2 days notice when you leave.  The apartents are within a few minutes of the Medical Center (which includes MDA, Children's Hospital, Baylor Heart, etc.)  They provide a shuttle to the Medical Center but the drive is easy and we did our own driving.The apartments are not fancy but are comfortable.  Linens and dishes are provided.  I hope this helps someone needing housing for an extended stay.  We were in a hotel for three weeks before an apartment became available and were in the apartment for 7 weeks.  Get on the list as soon as you know you will be needing housing.  

Gigi

You can check this out at:  churchapartmentministry.org

 

 

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