EC and esophagectomy questions

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m_neal_o
m_neal_o Member Posts: 2
A friend on another board told me about this discussion board and suggested posting to it. I appreciate the suggestion and am glad to find it! I posted the following to another group so please forgive the duplication if you follow other EC groups. Just 'widening the net' so to speak. And thanks for the feedback!

My dad is being treated for Esophageal Cancer. After many years of chronic heartburn, a reduced ability to swallow prompted the first visit (Nov. 2010) to the doctor followed by the EC diagnosis in late December 2010.

He finished 28 treatments of radiation on 3/9/2011 and finished chemotherapy on 4/22/2011. Chemo consisted of (4)-7 hour days 4 weeks apart of cisplatin and the same 4 weeks’ Monday thru Friday '5FU' via pump. Before chemotherapy and radiation we understood surgery to be a possibility afterward. It was explained that one of the reasons to do chemo and radiation first, should surgery still be necessary, was to reduce the cancer, thus reducing the scope, severity, recovery etc of the surgery.

Although none of the post-treatment tests show cancer, "activity" (barretts is what I think they mean by that) in the lower esophagus has caused his main cancer doctor to recommend surgery (esophagectomy), to prevent (as much as possible) the return of the cancer.

First we talked to a pair of surgeons that would do the surgery together - one said it was necessary to prevent it coming back. The second was concerned with the surgery because of the scar tissue resulting in the delay after chemo and radiation and was leaning 'against' surgery.

For a second opinion, we went to a dr recommended by a friend. He seems very knowledgeable, the scar tissue doesn't bother him that much, he just says it will complicate/lengthen the surgery a little. Indicates we are already on the outside edge (timeline) of the window of opportunity for surgery. And holds nothing back as far as the complicated nature of the surgery and the possibility of the cancer returning w/o surgery (nearly certain) and with surgery (maybe as high as 50% still due to cells having spread up till now.) While some complications are surely worse than others, we understand there's a 90% complication rate with the surgery.

Several other personal contacts have highly recommended Scott and White Cancer Institute in Temple TX.

Where does one go to find out who/where the experts are in this field?

What about statistics, national and otherwise? Is it possible to get hospital specific stats or even doctor specific stats?? Is it possible to get anything like that? I understand the complexity of mere statistics but I am just trying to get a broad sense of what we are up against and who/where might be best suited to help us.

Although our current understanding seems to make surgery the better of the options, another Dr might have a different take on the whole situation. In my early research on EC, I thought I remembered that EC was one of few cancers that was NOT *quite* as likely to spread.??

Just want to have a better understanding of the options, pros/cons, risks, etc. /before/ the decisions need to be made...and they need to be made very quickly!

Would anyone have experience to share concerning either Dr. Paul Kana1y (Oklahoma City) or with Scott & White Cancer Institute (Temple TX)? Of course stats on outcomes and a list of complications and their occurrence would be nice too. Any information is appreciated and adds to our ability to make the best decisions. Thanks!

Comments

  • Unknown
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    This comment has been removed by the Moderator
  • NikiMo
    NikiMo Member Posts: 342
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    Glad you posted
    Hi M_Neal_O,

    Me again, glad you posted here. So many people on here are knowledgeable about this disease. Everyone seems to have their area of expertise, from emotional support, to nutrition help, and of course knowledge about the surgery. William is the person I was hoping you could get in touch with, he knows A LOT about the surgery and this disease. Please call him as he has asked.

    Good luck with you father :)

    Niki
  • BMGky
    BMGky Member Posts: 621
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    Please contact Mr. Marshall.
    Please contact Mr. Marshall. As to surgery or not, my husband's PET scan post chemo/rad showed no cancer activity. His oncologist said he must have the surgery for a chance of survival. Had the invasive Ivor Lewis. Upon biopsy of the esophagus following the surgery, underneath the scar tissue that had formed from the radiation were live cancer cells. Our oncologist emphatically stated, "That's the reason we do the surgery!" Husband is 15 months post op and presently continues to show no evidence of disease and is enjoying life.
  • Unknown
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    BMGky said:

    Please contact Mr. Marshall.
    Please contact Mr. Marshall. As to surgery or not, my husband's PET scan post chemo/rad showed no cancer activity. His oncologist said he must have the surgery for a chance of survival. Had the invasive Ivor Lewis. Upon biopsy of the esophagus following the surgery, underneath the scar tissue that had formed from the radiation were live cancer cells. Our oncologist emphatically stated, "That's the reason we do the surgery!" Husband is 15 months post op and presently continues to show no evidence of disease and is enjoying life.

    This comment has been removed by the Moderator
  • cher76
    cher76 Member Posts: 292
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    We are from south Texas and
    We are from south Texas and my husband was diagnosed with EC stage IV in October 2010. We immediately sought treatment at MD Anderson in Houston. Don't know if you live in Texas, but MD Anderson is the leading cancer institute in the state. You can self refer by calling or inline, which is what we did. My husband is not a candidate for surgery, but I do know that there are some that post here who have had surgery there. It is a wonderful hospital with great doctors and support personnel. We have been pleased with our treatment there. After the initial treatment, we have been taking the chemo prescriptions home to our local oncologist who administers it. Hope this helps.
    Cheryl
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
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    unknown said:

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    God Bless You
    Dearest William and Loretta
    I just wanted to thank you both for being two of the most helpful, knowledgeable people here. You are so loving, and caring. Hope you hear back from these drs. soon. Keep up the good work. Many hugs to you both.
    Tina in Va
  • Unknown
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    God Bless You
    Dearest William and Loretta
    I just wanted to thank you both for being two of the most helpful, knowledgeable people here. You are so loving, and caring. Hope you hear back from these drs. soon. Keep up the good work. Many hugs to you both.
    Tina in Va

    This comment has been removed by the Moderator
  • m_neal_o
    m_neal_o Member Posts: 2
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    unknown said:

    This comment has been removed by the Moderator

    update
    Please forgive me not checking in before now.

    We went from being in an 'information void' to being flooded with so many kind and helpful responses. We do have a surgery scheduled locally but are still very much open (and information for consultation sent) to other hospitals that are known for their expertise.

    Either I or my parents will contact you.

    We appreciate all the help,
    Neal
  • rollnon
    rollnon Member Posts: 3
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    m_neal_o said:

    update
    Please forgive me not checking in before now.

    We went from being in an 'information void' to being flooded with so many kind and helpful responses. We do have a surgery scheduled locally but are still very much open (and information for consultation sent) to other hospitals that are known for their expertise.

    Either I or my parents will contact you.

    We appreciate all the help,
    Neal

    Esophagectomy-Post Radiation-Bleeding
    I hope I haven't intruded? I am male, 71 year old, 3 years Post surgury and 1 1/2 years post radiation with a T III diagnosis. Surgury was successfully performed by Dr Ross Bremner, Surgical Director, Center for Thorasic Disease, St Joseph Hospital, Phoenix, AZ (602.406.4000). A physician I could highly recommend (he and the director of the same unit at MD Ancerson were trained by his father who was the director of the the USC Surgical unit that developed this procedure).

    The reason I have joined the conversation is as follows. Since the radiation treatments were completed I have had intermitant internal bleeding in my stomach (identified by my Oncologist as post Radiation damage). I continue to require 2 units of blood tranfused in an average month. I have had 3 Endoscopy's performed since the original surgery. On the first 2 they cauterized several of the sites in my stomach without success. On the last they added a second medication. I take Carafate (liquid) 4x daily and Cholestyramine nightly. In additon I take 40mg of Protonics 2x daily. My PT and CT scans have been cancer free since the surgury.

    My physicians do not have a solution for my bleeding problems and I am hoping to find others that suffer the same issues and perhaps find a solution. Any information regarding treatment of this condition would be greatly appreciated.

    Joseph Stone
  • Frumpy
    Frumpy Member Posts: 6
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    May clinic
    My husband had surgery at mayo clinic with Dr. wiggle we were very pleased . Mayo clinic is one of the top hospitals for Esophageal cancer. Good luck Frumpy
  • Nancy21
    Nancy21 Member Posts: 5
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    Esoph cancer
    My husband was diagnosed with esoph cancer adneocarcinoma t3 n1 m0 in dec 2011. We live in Atalanta but after doing some due diligence we ended up going to Houston to MD Anderson or the 6 wks of radiation n chemo. He had 28 PROTON radiation treatments and 5 rounds of chemo. He finished at the end of Jan29 th. We came back and he had an ivor Lewis procedure with Dr Wayne Hofstetter Mar 16,11 He did exceptionally well and we left the hospital after 5 1/2 days.

    Currently he is having the last of chemo n
    PROTON radiation treatment for an additional lymph node that showed in his pet scan 3 months after the surgery. No evidence of any other activity.
    He has done super and has had no side affects except adjusting to small meals several times per day n some stomach aches 30 mins after eating some foods.
    Dr Hofstetter is amazing and meticulous. We highly considered an mie procedure-- I really wanted to have that done in Pittsburg, but his dr was not suggesting an mie due to the node involvement. I am pleased that we did the ivor as they were able to extract some difficult nodes along his vocal cords. They are very hard to reach. I was very concerned about the ivor and really did a ton of talking to the office in Pa but we considered the surgery an inconvenience but not the hideous thing I feared.
    We love the Lord and relied heavily on His leading during our decision making.
    The one thing common with every doc we spoke with was-- surgery is essential to get rid of it. I really researched for ppl who chose not to have the surgery-- I found just one in New Zealand that posted.
    Time is of the essence however. I will pray for your dad. Nanc