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

From Wikipedia, the free encyclopedia

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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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.

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 ladies think about my position here. Any opinions or thoughts would be very welcomed.

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19 Responses to Pelvic Exenteration…

  1. I think you have to have all of your questions answered by the doctors and then really think or pray about it if you pray. You will know in your gut at some point what will be the right answer for you. I will say a rosary for you on my end.

  2. kelly says:

    The surgery is radical, to say the least. And the body image issues, Ii would imagine, would be significant. Its amazing what people can adapt to, though. What an unimaginably hard choice you face. I would indeed ask the doctors ALL your questions.

    And I would also say that I don’t think you should feel selfish if you decide not to proceed. Its ok to consider quality of life and your own feelings. I’m a mother too (though they ARE older (9 and 11) and I’ve had those moments of agony you describe, imagining THEIR suffering if/when I die. However, I think just because you’re a mother it means you have to go along with ANY intervention if it doesn’t feel right to you (especially if the doctors can’t promise much). Every person’s journey and circumstances are different – I’ll be praying for you as well.

  3. kelly says:

    I meant to say, However, I DONT think just because you’re a mother. Sorry! Kelly

  4. bcjenster says:

    It’s so easy to say what I would do in your position, but in reality I have no idea. It’s not a simple right or wrong answer. I pray you’ll have more peace about whichever decision you make after you speak to your doctors.

  5. Jyber says:

    Is there any way you can be in touch with others who have had this procedure to find out what it is like to live with afterwards? (Perhaps you have already done that and I have missed it.)

    I would try to get all the data in that I could before attempting to make the decision that would be right for me.

    REALLY a tough decision – I certainly feel for you.

    Joan/Jyber

  6. I would also suggest asking your surgeon or one of the various cancer organizations to put you in touch with other women who have already had this procedure.

    I found that talking to other women was the most helpful way of determinging what I wanted. As I spoke with more and more women, I began to realize…”this resonates with me” or “I don’t relate to this at all.” As I started to identify which things sounded right for me and which things sounded wrong for me, I was able to discover where my heart lay.

    Only you can know what is right for you. (I don’t envy you this decision!)

    I am praying for you!

  7. clergygirl says:

    Second and third opinions are good too. You are in my thoughts and prayers as you decide.

  8. tracya says:

    sorry jen, i thought you knew that’s what it was called…it is extensive but not insurmountable.

    i don’t know how i would cope if i were facing that surgery and i would never pretend to tell you it will be easy but you will have lots of people…friends, family and health care professionals to help you through it.

    ever see that movie chicken run?? when one chicken says there’s a a million to one chance of getting out…and ginger says “then there is still a chance”

    for a 25-40% chance, i would dig deep and find the courage to do it for my kids. i’m sure you will too. think positive….

  9. Kelli says:

    I am so sorry you have been dealt so many challenging things in your young
    life! It’s times like these that being alone is the most profound. Decisions like
    this should not have to be made by anyone. I would talk to anyone who may
    have been through this as well. Their experience is the only true answers you may
    find. Doctors can be cruelly optimistic I have found. My father was given 25%
    chance in February but he didn’t make it 2 days past his procedure. I knew he
    wouldn’t live but my Mother acted totally shocked by his death. This was heart
    problems but he began these problems in his 30s. Because of the Docs he sat
    on machines for 3 days which he did not want ever again. He knew he would not
    make it in the hospital again. Do you ever feel that way? My Dad is pain free with the Lord now but he lived more than any healthy men we knew. And that is what your kids will remember about you. He wanted to live so much but it wasn’t in his hands anymore. They’ll think about you that way too, you have fought so hard to live.
    Have as much fun as you can now, make videos of yourself, write letters to them,etc
    Kids know by your actions how much you love them. God bless and I will hope and
    pray you get some relief.

  10. cindyr says:

    That is the same offer I am getting. I am diagnosed with recurrent uterine cancer for the second time. One dr says pelvic exentoration and the other says no cuz it is close to the pelvic side wall so just do chemo and have 1-3 yrs of life with my 9y/o

  11. brady says:

    I can tell you this is one of the most life altering experiences.It has been four years since my pelvic exonerationn. I have had many complications although I am still here. When I had surgery I was unaware of the fact that I would wake up in ICU.My surgery was due to radiation damage not recurrance.It has taken a long time to adjust to my new body image. I sometimes still ask “what if” (it never helps).Please get several opinions,as this surgery is as Isaid life altering. By the way do not give up I was given a 30% chance of survival that was six years ago. God Bless all who are facing this.

  12. polly says:

    Please pray for my friend who is having this surgery 2/12. Again…she is doing it for her boys (10,12). Her cancer is VERY advanced…stage IV….but she wants all the time she can have with them….I’m just not sure the “quality” she will be left with isn’t going to be more painful for her family to endure. They are also doing a sacrectomy…it’s just a horrific surgery with very little hope for a cure….just more time….I hope the surgeon isn’t doing this “only option” simply because that’s what surgeons do….surgery….I KNOW my friend isn’t “hearing” all the post-op possibilities….including not surviving the surgery….she just wants her boys to know she’ll try ANYTHING to stay with them. I am so afraid for what she is about to bring upon herself….please pray….

    • Dawna Niklaus says:

      Polly,
      How is your friend? I am trying to make the decision to have or not have a pelvic exenteration. Thank you for anything you are willing to share with me.

      • Melody Clemons says:

        Hello Dawna,
        This may be too soon, but was wondering what your decision was whether to have the surgery or not. I too am facing that decision.

  13. nelly says:

    this sounds so horrible and unfair. I am so angry thinking about this horrible disease.
    My mother is faced with the same decision, I want so badly for her to live and I am terrified to think about what she is going through and what will happen during and after the surgery. God help us all.

  14. nelly says:

    I don’t know what to do, are there any positive stories about survivors?

  15. Lisa says:

    To all women considering this surgery….

    I am getting ready to go spend another night @ hospice with my friend Janet, 48, mother of 2 beautiful boys 9 & 12.Her boys were her reason to have this radical surgery….”I have to do EVERYTHING for my boys….I can’t leave my boys….”

    Janet was dx exactly 1 year ago with stage 4 anal cancer. she went to Sloan….had a round of chemo in conjunction with radiation. By Christmas she was told the cancer not only didn’t respond….it got worst. Her only option left….her only hope….was this surgery. On 2/16-17 of this year she had 2 separate days of 12 hour surgeries. As a nurse of 30 years, when Janet showed me the “diagrams” given by the MD’s,
    I finally had to approach her and say:

    “You do NOT have to do this….this is barbaric,beyond disfiguring,requiring months of physical rehab…and NO guarantee!!! The only guarantee is that if the cancer is not completely extinguished…there is nothing else they can do!”

    She looked @ me and said;
    “I don’t WANT to do it….I HAVE to do it….I want my boys to know I tried absolutely EVERYTHING to stay with them!”

    It has been a horrific 6 months since then….a month @ Sloan….2 months in rehab….blood transfusions…PT….unrelenting pain….and now this….it’s back….she has been in hospice for 2 weeks….and now her boys have to watch her slip away right before their eyes after living a year of total upheaval in their lives….

    No one should have to go thru this….

    Would she have survived without the surgery? No, but this last year could have been a year with her boys…not with doctors, hospitals,radiologist, oncologists….

    Her time is up…and she was so busy addressing the “disease” she had no time for her boys…how excrutiatingly sad…it didn’t have to be this way….

    DON’T DO IT!!!!!!

    • Melody,
      Yes, after many agonizing weeks of research and finding sites which I found several women who have had the surgery (all of whom were glad they had it) I have made my decision. I have decided not to have the surgery. There are many reasons for my decision, and believe me it was not made lightly. I do not think others should necessairly make this same decision, as it is such a personal one and everyone’s circumstances are different and everyone has a different opinion of quality of life. I would be glad to explain more if you are interested.

      To Lisa,
      I am so sorry about your friend and what she is going through. I do think however that each person must make the best decision for themself, not necessairly what others think they should do. No one can know the results of their decision, you just have to believe it is the best decision for YOU. My prayers are with you, your friend Janet and her family.

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