Tuesday, 5 August 2008

Pelvic Exenteration...

That is what it is called! It is radical surgery indeed! More radical that I imagined! Here are some of the facts from Wikipedia…

Pelvic exenteration

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Intervention:
Pelvic exenteration
ICD-10 code:
ICD-9 code: 68.8
MeSH D010385
Other codes:

Pelvic exenteration (or pelvic evisceration) is a radical surgical treatment that removes all organs from a person’s pelvic cavity. The urinary bladder, urethra, rectum, and anus are removed. The procedure leaves the person with a permanent colostomy and vesicostomy. In women, the vagina, cervix, uterus, fallopian tubes, ovaries, and in some cases the vulva are removed. In men, the prostate is removed.

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[edit] Indications

Pelvic exenteration is most commonly used in cases of very advanced or recurrent cancer, in which less radical surgical options are not technically possible or would not be sufficient to remove all the tumor. This procedure is performed for many types of cancer including genitourinary and colorectal cancers.

[edit] Complications

After pelvic exenteration, many patients will have perineal hernia, often without symptoms, but only 3–10% will have perineal hernia requiring surgical repair.[1]

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It is pretty radical isn’t it? I have a LOT of questions for my surgeon before I make my final decision. One of the medical sites I researched (can’t remember which one) said that a 25-45% chance was typical! Gosh, I think I would want more of a quarantee than that. I mean we are talking major surgery here. Apparently the surgeons can reconstruct you a ‘new’ vagina during the surgery or you can have reconstructive surgery later on. I can tell you something for nothing ladies….I am terrified! I honestly don’t know whether I want to do this or not. My first thoughts on it are that if I didn’t have Jack, there is no way I would do it to myself. I would continue with the Avastin, have a couple of reasonably good years, try any clinical trials that came my way and just try to hang in there the best I could. The problem with that is, I may die in two years. I have been advised that I actually will die somewhere around there, could be less, could be a bit more. The thing that plays on my mind and heart though is Jack. If I die he is going to suffer immense pain, so much that I can’t bear to imagine it. If I have this surgery, I am going to suffer immense pain, better me than him. So you see my problem, I kind of have to do this because I don’t want Jack to suffer. I would feel selfish if I didn’t do it I think. Selfish if I didn’t try whatever chance I could get. That’s the other thing, I should probably feel very grateful because a lot of other people do not get an option to live a lot longer or even be cured which is what my surgeons are going for, a cure. I don’t know, I am extremely confused. This is all another part of cancer. It seems that it never ends. I have been through so much already, and now this. Am I even strong enough to cope with this? So many questions. I am interested as to what you, my blog family think about my position here. Any opinions or thoughts would be very welcomed.

44 comments:

  1. My immediate, first reaction: you would not be selfish to not have the surgery. That's not saying that you should choose not to; simply, whatever you choose, you are not being at all selfish!

    Please just give yourself permission to make whatever decision feels right after speaking with your doctors.

    Hugs.

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  2. That's such a tough call. I guess, you have to ask the surgeons what sort of quality of life you'll have.

    I'm actually having a tough time commenting on this because it is such a personal decision. I don't think it would be selfish to not go through with it if you decided not to. I don't want you to worry about doing something you really don't want to because you are afraid you are letting your boys down.

    You have been through so much and give of yourself so completely to you boys. I don't think either boy would look back on this and say you were selfish, either way, dearest.

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  3. Fear? You are telling me of your fear!? I am terrified, traumatized, and filled to overwhelmed with dread and horror at the prospect. That you can confront what is challenging you with the gentle word, "fear" bespeaks your courage and strength.

    Then, because of my intense attachment to all of the beauty and wonder that is You, I am crushed beneath the weight of compassionate devastation with the consideration that you are even having to deal with any of this. I HATE all that is the evil of this disease threatening you. (and you may never see me use the "hate" word anywhere else ... because I refuse to let it sneak into my consciousness ... ever ... but your present plight is THE exception.)

    All that I can do is offer you all of my painfully inadequate ... Self. And I am yours! I love You.

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  4. I think I'd have the surgery for the same reasons you mentioned -- sparing my young child the pain of losing his mom -- but what I *think* I'd do from this side of the internet is meaningless in the reality of the situation.

    You absolutely will know what to do. You're a terrific mom and you will know the right thing for you and for your boys. Arguments could be made either way, and I know you will tease out the ones that are right for your family.

    There is no "selfish" decision available to you here.

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  5. Hi Sweetie,

    Talking from my heart to yours...being honest and saying what my 'gut' feels...(also aknowledging that I know nothing!)

    You have to do what is right for YOU....Jack is going to grieve when you die...or his dad ..or his brother...he is going to have to deal with whatever happens with him/you/the family...

    I know you want to be here for as long as possible to be his mommy, to comfort him, to laugh with him, to see him grow up...

    right now...at this minute...YOU are also important...sometimes we think it is not about 'me', but about the others, in this case Jack...and yes, it is about them as well thinking about the future...but thinking about NOW...at this moment...what is going to be the best option, physically, emotionally for YOU...

    YOUR pain, your comfort, your heart is just as important...children adapt quickly to circumstances...

    right now, where I'm sitting here between the magestical Rocky mountains, I'm wondering how YOU are...and how your heart is...and wish I was closer to giggle with you...and cry with you...and burn all this information which is sometimes toooooo much and overbearing and just continue life the way we know it...

    but back in your life....just trust your gut...

    I heard something really 'powerful' the other day....

    My sister in law did an angel reading for me and I pulled the card 'power'. She said i should imagine a wand in my hand with a bright light shining from it...she asked me to close my eyes and tell her how i feel. I said I felt uncomfortable because I don't like to have that kind of 'power'... on which she said..."control = fear based, power = LOVE'.

    The very next day i read sometime in the line of....'we have to do things from love...not because of fear...we must do it because of LOVE'.

    I love you. I love you. I love you. xx

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  6. WOW. I kind of thought that was what you were facing, but to see it here in cold black and white is numbing, to put it mildly! I really think you need to be writing down questions for your doctors. You can think about this until your head is spinning, but I don't see how you can make a decision until you have their input and the answers to your questions. No matter what you decide, your children will know that it was a decision made from your deep love and concern for them.

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  7. Dear Jen ~ I had no idea that it was so invasive ~ you are one brave lady. I pray that this is the end of this terrible cancer and this operation is the answer.
    Love to You XXXXXXX

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  8. Dear Jennifer,
    It's really an invasive surgery! I don't know what to say now...
    Ask all your questions and demand the answers. Whatever you decide i am with you.
    Take care, sending love, Bete

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  9. Will the doctors put you in touch with someone who has gone through this surgery? I would image that would be incredibly helpful and sometimes past patients volunteer to talk to potential patients.

    It is a really hard decision. My best - Susan

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  10. Finally I am able to leave a comment!!

    I am with the lady who said that as a mother, in theory, I would go ahead and do it - but that's easy for me to say because I am not facing that reality.

    Is there any way possible that you can speak face to face with someone who has had this surgery and is now cancer free because of it? Even by phone? I think then you could ask all the questions you need to ask, and get a response from someone who had been exactly in your shoes.

    Whatever you decide, it's the right decision.

    I wish you all the very, very best.

    Warm Wishes,
    Linda @ Barefoot in the Park

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  11. Dearest Jen - this is going to be one of your hardest decisions and there cannot be any guarantees either way. A friend's SIL has had this surgery and found the recovery took a long time but is doing better now. Ask questions, reason things out, but even though your first thoughts are for your gorgeous boys, you are important too.
    Sending you love and prayers as always,
    K xxxx

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  12. Jen - I can't imagine having to make this decision. All you can really do is follow your heart. I totally know what you mean about doing it for your little guy though. One thing to remember though is that you are tough enough. If anyone could do this, it would be you. Hugs. Lisa

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  13. I agree with those who have commented that you should do this for YOU or not do it for YOU. There is a time for taking care of your son and there's a time for taking care of you. This is the time to focus on YOU, I think.

    If it feels like this surgery is the best way to take care of you, then go for it. If it doesn't, then trust that God will be there for your son when the time comes. Only you can know if and when it's time to let go. You know? Trust your feelings after you get all the facts.

    But, one thing about words. Sometimes we can language ourselves into anguish. What I mean is that if you do this surgery, you will have a bag attached to your body. This is true. But you will never ever be a bag lady. You will still be you. An angel with feet. xo

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  14. Dearest Jenni—I agree with those who say you must think of YOU now even as I feel the powerful love you have for your boys and your concern that you may not live long enough to be there for them. I am so deeply moved by your devotion to your boys and know too that you deserve a whole, healed life. There are many stories of healing from cancer even at late stages and many ways to heal. It may not be an either/or choice. I would ask the surgeons if they might begin, at least, with getting as much of the tumor out as possible without affecting your organs. I would ask them to try. I would take it in stages. Then I would continue with other treatments, the chemo, acupuncture, meditation, prayer, happiness, while monitoring the progress with the appropriate tests. Already you have come so far! Already you are healing, I'm sure. It is not for me to tell you what to do. I think in stillness you will feel what is right for you and whatever you decide I support you in love and prayer. Know that you are a bright, beautiful and powerful soul—I know the right way forward will come to you, dear Jenni. We are here for you and send love always as well as prayers for your total healing and long, healthy life.

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  15. You were so excited about the prospect of this surgery, I thought that you had the information about how invasive it was. I had a pretty good idea when you first described it, and was thinking it was a rough decision. Long recovery, no guarantees. I don't think you would be having this dilemma if you hadn't had some feel better days in the recent past. I think it's time to pray on it. My guides continue to send you dreamtime healing, for whatever purposes you need it.

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  16. Sending you hugs for this tough decision, but you will make the right decision for you.

    I have no idea what I would do if I were in your shoes, but it seems to me that you are such a life-loving person, and you adore your children so, that even though it is a terrifying proposition, if it works, it might be worth it? I can in no way even try to influence your decision, but as someone said in a previous comment, even if you have bags, you will still be you and you will be present for yourself and your family. It's a really, really scary procedure, almost unthinkable -- but the alternative is pretty awful too. You are in an unimaginably tough spot.

    Something that always helps me when I'm faced with something scary (although nothing as scary as this) is to just take it one tiny step at a time. Find out if it's possible, first. Then talk to the doctors. Then talk to someone who has had the procedure. Then talk to your family. Then pray, and listen for an answer. Sometimes we already know what the decision is, deep inside ourselves, but we are too scared to really look at it quite yet. It will come.

    You are brave, brave, brave. And you WILL make the right decision. Hugs!

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  17. I can't even express how inspired I feel by the devotion you have to your boys. They are both so lucky to have you as a mother.

    If you have the operation, you are granting yourself a chance at a longer life and Jack a chance to spend more time with his mommy. That said, going the other route is certainly not selfish at all.
    I agree with some of the other comments about talking to someone who has had the procedure. That might go a very long way with helping you reach a decision.

    I think that you are just amazing. And your attitude towards life in general puts me to shame.

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  18. Jen,
    Oh dear I don't even know where to begin. Follow your heart dear. You are strong and you are brave. Here is your second chance. Pray that God will give you an answer. Your love for your boys will help guide your decision. I must admit I would do it, even if meant it's not a guarantee, but life isn't a guarantee is it? Follow your heart, and don't focus on the odds, keep your focus on a positive outcome. I'll be praying for you and your family.
    Many Hugs,
    Rose

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  19. Dear Jen
    I am so happy to hear that the prognosis for the surgury is so positive. Do your research, ask your questions and follow your heart!!!!
    You are doing amazing and your boys are lucky they have you
    Nicky from Canada

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  20. As scary as it is, I think I would do it, personally speaking. If it meant many more years as compared to two, I wouldn't hesitate. It is radical. Are you able to get to speak with anyone who has had the surgery? If there were any women you could talk to who have had it done, wouldn't that be helpful? Something to consider.
    We will move mountains for the love of our children, won't we? You are brave, brave, brave, my friend...

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  21. Jen, I agree that you have a lot of questions to ask. What is the survival rate of this surgery, and what is the life expectancy afterwards? What is the chance it will get all of the cancer for good? I know how those hateful cancer cells tend to survive.

    Of course you want to be here for Jack, but I know you want to be here for him cancer-free and with life quality.

    My prayers continue.

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  22. Darling, I have to write this totally candidly, but know that I respect whatever decision you make.

    Four years ago, my very best friend in the world died from cancer, much too young (three babies at home). I'd do this, to have that extra time. Any extra time is good time. Any extra time, I'd take. There are no guarantees in this life, of course. But this is a possibility for more time. A good shot at more time that I don't think you can pass up.

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  23. Oh my. I don't know what I'd do. Like you, I would have dozens of questions, I would want to talk to someone whose been through it, I would want to do what's best. But who's to judge that? I don't think there's any selfish here - I don't think your boys, or anyone else, could ever say you didn't do everything in your power to stay here with them, whether you have the surgery or not. This is a huge, huge decision - and if anyone doubts your commitment to live, send them here, and they will have no doubts in your mind that you did your very best, every day.

    Hugs, Ginny

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  24. Wow, Jenn, that's a huge surgery. You alone are really the only one who can say go for it or not. You alone will feel the physical pain but also the 'mental pain' of Jack should you die. Which is greater? You will come up with the right solution for your family.

    Should you decide to go through the surgery do you have sufficient, long-term help while you recover fully? So that you can just focus on you and your recovery. I wished I lived near you to help out. You are in Australia, yes?

    My thoughts and prayers are with you as you consider all your options.

    Cindy in Canada

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  25. Hello Jen - I would try not to start the decision making process until after your appointment with the surgeons. Before you go to the appointment scribble down all your questions and fears so that you can refer to them if needed. Finally, do NOT let the medical websites influence your decision too much. Many of these are not monitored for validity. I also like the idea of being able to speak to others that have had the surgery. There is nothing like the voice of experience. Also, as I commented on another of your posts, your doctors would not have presented this as an option if they felt you were a poor candidate for surgery.

    As many have pointed out, we will stand by you whatever your decision and for whatever reason you come to it. You have proven time and again that you are one hell of a fighter. If you decide to go ahead with the surgery I pray you go in with the thought "I AM going to have this surgery, I AM going to recover, and I AM going to get on with my life. Sure wish I lived closer to be able to help you out duing recovery. God bless you Jen...I will pray for you to be able to work your way to a decision. Sheila in west Michigan

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  26. Jen,
    I'm here to cheer you on. You can do it Jen, and we will be here for you through thick and thin. Everyone is different, so try not to think of the bad outcomes, instead keep your focus on all of the positive outcomes, that will help get you through. Just wanted to add my two cents again, as I've had you on my mind.
    Hugs,
    Rose

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  27. Dear, dear, dear one:
    The right answer will come to you. It can only come to you. With deep love,
    Karen

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  28. Jen,
    (I've learned more on Wikipedia tonight about a hundred other things than what I originally went to look up....your exenteration!)
    You have quite a decision to make, my friend. I have to agree with Mary Ann on this. Trust God (and leave all the consequences to Him).
    I lost a dear friend last year to breast cancer (38 yrs old) who had 4 children under the age of 10. It hasn't been an easy road for them. But they are happy and well-adjusted children even in the absence of one of the sweetest and funniest people they may ever know. (I saved her e-mails that made us laugh, cry and search within our own hearts while she battled her ordeal with courage and dignity.) God has blessed her husband and kids with wonderful loving family and friends to help them through this difficult season in time.
    The kids are happy and secure because my friend, Sonya and her husband, lived a life (not perfect, but forgiven) in Christ. And her children felt that strength and confidence from their personal relationship with Him.
    Children are strong, Jen, when they have knowledge of the truth and knowing their lives will be guided by an Awesome God who loves us and wants a personal relationship with us more than anything else he has created!
    You will not make the wrong decision either way you look at it. But the most important decision any of us can make in our lifetime is asking for forgiveness of our sin through faith in Jesus Christ. God's Grace cannot be earned and we're definately not worthy of it. (I fail Him-sometimes miserably-EVERYDAY!) But His Grace is freely given to us by believing in our hearts and professing with our mouths that His Son, Jesus, lived a perfect life without sin and died for ALL OF US so that we won't be eternally separated from Him when we die.
    He not only comes to give us eternal life, but an abundant life or a great, confident quality of life. It's simple enough for children to understand and God will give you and your family unmeasurable peace and wisdom which will make you stronger human beings to face the pressures of the world that He has overcome.
    I really am not meaning to sound like a religious fanatic (believe me, I'm not). Because, it's not about religion, just a relationship with a perfect, forgiving Saviour who can guide you in making a decision that's not based on guilt. Don't allow yourself to feel the least bit guilty, Jen. You've been the best mom to your boys that you know how, and they love you and trust you completely. Just Trust in God that He IS HERE for you and your family in your present and future decisions. And He wants and waits for you to decide to Trust In Him.
    Love you, Brave Girl!!!
    kat

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  29. Jen-
    I agree with all the comments here that say you need to do what is best for YOU and that there is no right or wrong or selfish choices but also strongly agree and hope that you will take into your heart what Karen Maezen Miller said--This is a choice only for you and only you can make it. Sit with this question deep in your heart and trust that which comes up for you. Its good to hear about others experiences with the surgery but not if you are looking for answers about what will happen to you. Only God knows that dear one.
    This is such a hard choice and I am sending you lots of love and healing energy and prayers--knowing that you will make the right choice for you and your family. I love you dearly.

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  30. I had a patient who had this done. She was a young woman in her early thirties I think and I remember thinking OMG. It was so radical. But she also had young children and I imagine wanted to stay with them. For me, I don't know what I'd do. It would be a tough decision. I don't know why though. Really I could live without a vagina and you already have colostomy, it would only mean one more ostomy for your urine. Depends on what the survival rate is for the surgery and five years post surgery.

    Take care my dear.

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  31. Jen I came back to see you but read the comments as well I agree with Karen and Meg. That this a choice only you can make for you. Its hard but like anything else I have read here you are strong and you will make the choice for you God only knows the outcome and its in his plan already. I pray you will make the right choice for you.
    I agree with Meg on one thing. You can talk to other on what can happen or has to them. But each of us is different in how we will react,to surgery and treatments all of it. So I think when it comes to us making these choices we dig deep and make a educated choice on what the medical community is offering us. Its never easy been there in other ways myself.But I know you will work this out for what is the best situation for you and yours.
    Thinking of you and sending healing thoughts and prayers
    Take care of you

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  32. Dear Jen,
    I will bless your decision, what ever it is because you will have made it. It is yours to make.
    Ruthie from California

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  33. Blessings to you, whatever your decision is. And lots of love and positive energy.

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  34. there is no such thing as considering yourself OR considering jack...you are tethered together in ways that can't be teased apart. that's part of what's messing with you, dear girl. but you don't need me to tell you that. bless you as you walk through this terrible fire. we're here with you, listening and loving you and hurting for you.

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  35. I am so in awe of you. You are doing the right thing.

    From one mother to another.

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  36. whatever you decided Jen, we're with you all the way. we support you in any decision you make. my prayers too continue for you and i hope an answer is clear to you and i can completely see how you would question this surgery. hang in there. it will become clear. something always has to.

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  37. Your heart will tell you what is best.

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  38. You must have had such a hard time trying to manage all these feelings, wait, cope with the day to day, process the facts and even more. good luck for tomorrow. know we will all be waiting with you and sending you love, prayers and energy. hope you can distract yourself in a nice fun way in the meantime.

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  39. Echoing so many others here, I am not sure what I would do, sitting here with no penalties to bear for a decision, I believe I'd do it. You are o beautiful in your questing for knowledge and peace, and you have demonstrated a fierce will to live. Trust yourself, you'll know.
    xo

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  40. Not sure if my comment went through...Echoing so many others here, I am not sure what I would do, sitting here with no penalties to bear for a decision, I believe I'd do it. You are o beautiful in your questing for knowledge and peace, and you have demonstrated a fierce will to live. Trust yourself, you'll know.
    xo

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  41. Dearest Girl,
    What an extraordinary woman you are. None of us are in your shoes so it is very hard to comment but what if, just what if the surgery wipes you out for the best part of a year and even then the bastard bloody cancer still comes back? It seems such an horrific ordeal. Like you said, in two years more and more clinical trials may come to the fore to save you. Just ask a million questions first. With love, Vic x

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  42. hoping 080808 will be lucky for you and your thoughts will be clearer by the end of this day xox

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  43. Dear Jen,

    have been on holiday so didn't read about your fantastic news until last night. Wow! I'm so, so, so pleased and excited for you -to have hope again must be wonderful and fantastic beyond words.

    And I agree with what the others have said - talk to the doctors before you make any final decision.

    Have a lovely weekend.....and I'll certainly be having a glass of champagne tonight to celebrate your news(which will not be too much of a hardship at all) and I think you should have one (or two or three) too. :)


    Becky XXXXX

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  44. Jack has a precious bank of memories you have lovingly and painstakingly created, surgery or no surgery. And Jack is going to ache, whether he has you for two years or twenty. Your heart will guide you and understand this: there is no wrong choice.

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