Date and plan

steved
steved Member Posts: 834 Member
edited September 2012 in Colorectal Cancer #1
Back from meeting with a roomful of surgeons, oncologist and various hangers on and finally have a plan for surgery. For those that don't know I had rectal cancer in 2004 with recurrence last year. After various treatments was told there was no curative options and moved onto a palliative regime. Then a new publication of radical surgery was published and the local team thought I might be a candidate. It is clearance of all pelvic organs and a hemipelvectomy-taking off half the pelvis and leg. Have spent the last month or so being rescanned and fighting beaurocracy and now have a plan.

Will be admitted on the 17th and operated on the next day. A surgeon from Denmark is coming in for four days as no one in this country has done the op so he will mentor them. It will start with looking at para aortic nodes which if involved marks the end, but if not they will proceed over a number of days keeping me asleep. I will be in. Itu for some weeks and hospital for 2-3 months. Mobility will be by wheelchair or crutches for first six months but might have a chance at a prosthesis after that.

I feel ready and now want things to start. I accept it is a huge cost but it is my only chance at a long term cure (yes I am using that word on this board). They can't quantify how likely that is but it is a real chance but so is considerable morbidity and complications. At present my leg is getting sorer and weaker quite quickly and I am already on quite high dose morphine. I still work full timeout my quality of life is dismissing and will only continue to do so without something radical.

So that is the plan. It is as definite as it can be (I'll only truly believe it is going to happen when I am on the table) and feel it is the right decision. I am of course also terrified but mixed with hope that feels tolerable for now.

I welcome your thoughts and supports,
Steve
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Comments

  • maglets
    maglets Member Posts: 2,576 Member
    #2
    dearest doc steve.....
    pretty much overwhelmed here.....I believe in my heart that you have made a good decision....i am just not so sure that this board has ever seen such major surgery. I am responding quickly ....will probably cogitate....

    let me just say right off the top I salute your decision..and your bravery....
    this is of course a possible cure for you......what could be better???

    life with your kids can go on
    sending only best love and support

    mags
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #3
    My thoughts...
    My thoughts are that you are one of the bravest people I know of. Certainly you have my support, healing thoughts, well wishes, and great hope for you. We will all be thinking of you and your family as you make this endeavor towards cure.

    Please keep us updated if at all possible? I don't post a lot but I do keep up with you all.I have especially been rewarded by reading all of your posts. I appreciate you level-headed demeanor.

    Wishing all the best for you!

    -Pat
  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    #4
    Hi Steve, I am glad you have
    Hi Steve, I am glad you have a plan sand some dates, the in between can be the hardest.
    Please don't be afraid to use the word "cure" because sometimes that is where people find themselves. I am praying for many cures for many people these days.
    Keep us posted!
    GOD bless you.
    Brenda
  • ron50
    ron50 Member Posts: 1,723 Member
    #5
    If you wish to live
    I see no other course of action. I am just sorry that it has taken so much time to get thru the red tape. Good luck you have my best wishes for a good result and sppedy recovery,Ron.
  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    #6
    Steve
    I love reading your posts, such a reasonable level headed person. I wish for a successful surgery and a uneventful recovery. I know now that the date has been set you are just ready for it to happen. You are such a strong person I believe you will get through this and be walking with the prosthesis with your family. Please keep us up to date as you can, I know so many people care for you. Good luck.
    Sandy :)
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #7
    Surgery
    The surgery sounds so very complicated but know that you have been working with the doctors for some months. Now that the date is set, just getting it done is understandable. Wish that there was some way that we can find out how things went and how you are doing since it will be some time before you will be able to let us know yourself. My thoughts and prayers are with you and your team of doctors and assistants. Just know that while you are recouperating, I'll be waiting for that first post from you after surgery letting us know how you are.

    Kim
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #8
    Dear Steve
    I am glad that you and the doctors have been able to set a date.

    I pray that God guides these surgeons hands to provide the best possible outcome, and that His angles watch over you and provide you healing warmth afterwards.

    Always know that there are lots of us around the world who are sending our best wishes and vibes as you embark on this historic surgery.

    Hugs and love to you and your family,

    Marie who loves kitties
  • jr2012
    jr2012 Member Posts: 67
    #9
    Lovekitties said:

    Dear Steve
    I am glad that you and the doctors have been able to set a date.

    I pray that God guides these surgeons hands to provide the best possible outcome, and that His angles watch over you and provide you healing warmth afterwards.

    Always know that there are lots of us around the world who are sending our best wishes and vibes as you embark on this historic surgery.

    Hugs and love to you and your family,

    Marie who loves kitties

    Hey Steve, I donno what to
    Hey Steve,

    I donno what to say, I am overwhelmed by your courage and grit.

    I need to also tell you to google 'macrobiotic diet', 'vitamin c' and 'ozone therapy' in case you have not done so already.

    I love how you say long term cure on this board :)

    I think I recently read in one of your posts that you drink alcohol everyday - if that was you, then have just one request - if you can please give up alcohol as it is one thing that all anticancer diet forbid along with sugar...

    I just learned yesterday of a fakir guy in Mumbai who saves cancer patients - once in remission I plan to go to him Godwilling and if it works, then I will refer him here ... apparently everyone who went to him has come out of the worst cancer. In India, relapse is rare. Everyone that I know seems to have managed a permanent cure. I know some who did ayurveda and yoga and diet change to keep cancer at bay without chemo radiation. And now knowing of this fakir made me curious and also hopeful that I can share this with everyone who can get a chance to get back to normalcy again.

    I will be saying my prayers for you and keeping my fingers crossed for you that whatever happens, you survive this beast and pass with flying colors. Will be Waiting for update.

    Best wishes to you & your family
    & Hugs
  • tommycat
    tommycat Member Posts: 790 Member
    #10
    Yes, one chapter of your
    Yes, one chapter of your life is closing while another is opening. This new chapter will be a fresh start, minus the pain which can become so wearisome.
    I'm rooting for you Steve!
    When you're being wheeled into surgery, take a moment to remember all the people who are pulling for you and close your eyes with that thought---and open them to a better quality of life with your family.
    Huge hugs from California~
    Tommycat
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #11
    big dates, "extras"
    Steve,
    We're all rooting for you, Steve. Pretty much everyone here, conventional or otherwise, knows the curative powers of surgery.

    The surgeons may fear futility from prior dissemination on a para-aortic lymph node and then multiple wound sites but one might argue if CEA burden is under, say 20 or 50 from different papers, that an accessible, isolated PALN site might still be worth removal, along with the other major sites planned. Especially with enhanced nutrition and immune function beyond "standard".

    My wife went to surgery with her immune system revved on vit D3 and cimetidine; vitamin C and K2 replete in the mega sense, among other things. Even celecoxib (originated by the surgeons), and UFT up to 24 hr before. I was cheered when our surgeons elected to use the high dose oral cimetidine (like 800mg per 6 hr = 3200mg/d) to prevent gastric acid aspiration instead of the more common proton pump inhibitors.

    We faced down a lot of naysayers on surgery for the PALN cluster in April, 2011. Without removal of the major PALN cluster and adding the extras, I'm sure my wife would already be a casualty from dessemination. Her CEA continues to trend down when on full immunochemo, last night to 2.1. We have to move this year and she's preparing for construction even if another surgery or two may be needed.

    Often "impossible" becomes possible, one careful step at a time.
  • YoVita
    YoVita Member Posts: 590 Member
    #12
    Hoping
    for a cure for you. Stay strong and steady.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #13
    I wish you didn't have to got through this, Steve...
    but I would do the same, given that it's the best shot to be here to watch your kids grow up. As a parent, I'd do just about anything to stick around a little longer, to be there for a few more milestones. And while this is a tremendous sacrifice, I think it may very well give you the chance to be here for many more milestones in the lives of your children, and the value of that is incalculable. You'll be in my thoughts as you face this new stage of the journey. Sending strength your way~Ann Alexandria
  • So Worried
    So Worried Member Posts: 111 Member
    #14
    annalexandria said:

    I wish you didn't have to got through this, Steve...
    but I would do the same, given that it's the best shot to be here to watch your kids grow up. As a parent, I'd do just about anything to stick around a little longer, to be there for a few more milestones. And while this is a tremendous sacrifice, I think it may very well give you the chance to be here for many more milestones in the lives of your children, and the value of that is incalculable. You'll be in my thoughts as you face this new stage of the journey. Sending strength your way~Ann Alexandria

    Dear Steve
    I am amazed how brave you are! I'm so excited for you to have this opportunity and I also love the fact that you used the word "cure". I wish you all the best from the bottom of my heart. I will go to church (I live right down the road) on Sept. 17th and light a candle and say a prayer for you. I marked it on my calendar.
    You are in my thoughts, and I am hoping for a super great outcome!
  • devotion10
    devotion10 Member Posts: 623 Member
    #15
    My family and I will be thinking of you
    in the coming weeks, the days of your surgery, and everyday afterward until you come back on the site to give us a thumbs up. I understand both your fear and your hope. You are bravely choosing life and a potential long term cure. You sound determined and ready to precede with your plan. It seems that there is a reason that everything had fallen into place for you. We are all in your corner. Please tell your wife that if at any time she needs support as a caregiver to come here. We will all want to help her and we will be anxious to know how you are. Have courage Steve.

    Sincerely,

    Cynthia
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #16
    Steve
    You've done a lot of research on this and I know it's not a decision that you've come to easily nor one to be taken lightly.
    I wish you GREAT success and I truly admire your positive attitude and intestinal fortitude.
    I'll certainly be sending positive thoughts your way...
    -phil
  • steveandnat
    steveandnat Member Posts: 886
    #17
    great plan
    Steve praying your plan is a huge success!! I'm so glad you have such a good group surrounding you. Please keep us updated. Jeff
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #18
    Steve
    I might even step in a church and say a prayer for you. Whether you believe us or not you show great courage of spirit. You have nothing but my best wishes being sent your way as you go forward into this new challenge of life. We'll all be there with you in spirit!
    Winter Marie
  • Patteee
    Patteee Member Posts: 945
    #19
    My wishes and prayers for a
    My wishes and prayers for a safe procedure and a new beginning for you and your family. You have far more courage than I do Steve. I do feel as though it is your gold ring and the chance that it might, just might be the path to a cure, well, then ok. :)
  • JayhawkDan
    JayhawkDan Member Posts: 205
    #20
    Thanks for the update
    and the schedule. I too will be saying a prayer for you on the 18th. You impress the hell out of me and I admire your spirit of "let's get this show on the road," attitude. I always try and read your posts when I can because I usually learn something. Just know that you are very much appreciated. Best wishes and I look forward to hearing from you when you're able to post...postsurgery. Dan
  • taraHK
    taraHK Member Posts: 1,952 Member
    #21
    A relief?
    I imagine it's a huge relief to have a firm plan and dates in place. And of course it is still frightening. I am glad you will be in the hands of the best experts available.

    I will be thinking of you and sending prayers your way.

    Tara

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