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    Old 03-20-2005, 03:31 PM   #1
    ronnic
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    Liver Surgery

    SilverB suggested I share my liver resection experience with those having to think about surgery.

    In December I was told I had liver cancer and that surgery was my best option. I tried to read up on cancer and liver surgery on the internet but it was too depressing. So I was really unprepared for what happened.

    I had the surgery done at Duke University in Durham, NC in January. It is an excellent hospital but a bit overwhelming with all of its doctors/students. In spite of that, I would highly recommend this place to anyone having to contemplate having liver surgery.

    I was told I would be in the hospital for 7-10 days. Also, I would be in the intensive care for several days. When I woke up from the surgery I realized I was not in intensive care and that the surgery had only taken 3 hours instead of the 5 hours I was originally told. Originally they were going to take out 7 tumors (1 large and 6 small) But as they were working on me they realized it was too much for me to go through so they took out the big one AND they took out my gall bladder. They saw a place on it that needed to be evaluated.

    The incision was huge. It was 17 inches long. It goes the length of the right side and across the top to the other side. It has a small downward turn on the left side. It was closed by staples. It looked like I had braces on my belly!!!!

    They didn't put the tube down my nose as I had been told. That was supposed to help me from becoming nauseous. I spent at least 24 hours being so sick on my stomach. I also had a central line in my neck. I never was sure why that was there. I had an IV. I used the pain pump to manage the pain. After they took that out I took oxycodone. Both managed the pain very well.

    It is hard to move about with that huge incision. My belly is just now getting over the soreness. The best way to describe how your belly feels is: I felt like I did 1000 sit ups last night!!!!! But the problem was that the soreness took forever to go away. The staples were removed 2 weeks after the surgery. If you have staples try to get them removed sooner. My skin started to grow over them and that made it hurt to remove them. It is a glorious feeling to have those staples out of you. Afterwards it was easier to move about.

    I was extremely weak at the beginning. But that is too be expected with any surgery. I feel like I have made a good recovery.

    Fortunately, I didn't have liver cancer after all. After waiting 3 weeks for the pathology report, I was finally told that the tumors are FNH. The spot they saw on the gallbladder was also benign.

    I wish anyone that has to go through this all the good wishes I can. If anyone would like more details let me know and I will do my best.

    ronni

     
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    Old 03-20-2005, 04:56 PM   #2
    dana99
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    Re: Liver Surgery

    Re; Ronni- Liver Surgery,
    \Thanks for the details of your surgery. I have been diagnosed with an adenoma(actually two of them) One has shrunk from 9.9cm to 6.5 cm and the other is much smaller. They are contemplating removing about 50 to 60% of my liver and said I will make a full recovery. I would like to get this over with as soon as possible as I have just had a baby and have also been told not to travel or participate in strenuous activity. They have put it off for another 3 months to see if it will shrink any more. The problem is I sit in limbo waiting. I have pain in my right side and night sweats with chills mid afternoon. My hands and feet and hips are now also very sore (like arthritis). Did you experience any of these affects? Would you have this surgery again if you had to do this all over? Any other information that you can provide would be great. Thanks, Dana

     
    Old 03-21-2005, 06:11 AM   #3
    ronnic
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    Re: Liver Surgery

    Hi Dana,

    First of all let me say I wish you all the best and hope things work out as well for you as they did for me.

    I wouldn't want to go through this again, BUT if I had no other choice I would. It was not as bad as I anticipated. And now that I know what it is like I know I could make it through again.

    I never really had much pain. I felt a twinge on my right side that every once in a while I would find my self rubbing that area. That is gone and I think now that it may have been the place in my gallbladder since I still have the smaller tumors in me.

    I actually hurt more now that I did before the surgery. The doctors say it is post operative pain and that my insides were contracted and they have to get back in their place. I was doubtful of this conclusion at first but now think that really may be the case since the pain is subsiding some.

    The amazing thing about liver surgery is that the liver regenerates. They told me within 2 months my liver would have grown back. I do liver blood tests every 2 weeks. The first time I had it done after the surgery the tests were normal except one. (and that was close to normal) I haven't heard from any of the tests following that so I am assuming they are okay. (no news; good news) I hope that is the case. I go back to the doctor next month and I will know for sure.

    You mentioned you had arthritis type pain. THAT is what got me started with the liver tests. I had just started seeing a rheumatologist. She was the one that suggested I get my liver evaluated. (I already knew I had a small lesion on the liver) She wanted to make sure my liver was not causing the arthritis pain. I really did not want to go to the liver doctor, but I agreed to this since I wanted relief from the arthritis pain. At first the liver doctor told me that my liver problems were probably due to the medicine I have taken over the years. But she wanted to do a scan to make sure. Well, that is when things went crazy. I had an ultrasound to start with. I wasn't concerned when they called me about that because I knew I had a small place on my liver. They sent me for a CT and the radiologist reported I had 7 places now!!!! And he said it was cancer!!!! The MRI reported cancer also. That is why I knew I had to have the surgery. If they had not said the "C" word I probably would not have done the surgery. (I have a bleeding disorder and surgery is always the last option)

    Well, to get on with the arthritis story.......My arthritis pain was so much better after the surgery I thought that the liver must have been causing all this pain. But silly me!!!!! I was wrong. It was the post operative pain medicine that made the arthritis feel better. The rheumatologist now says I have inflammatory arthritis and the liver had nothing to do with it!!!! So it is back to taking arthritis medicine and praying that stuff doesn't destroy my liver.

    Good luck to you. Let me know if you have any other questions. There is probably plenty I have left out so just ask questions and I will answer from my experiences.

    Take care,
    ronni

     
    Old 03-21-2005, 06:33 AM   #4
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    Re: Liver Surgery

    Hi Ronni,
    Thank you for your quick reply. I feel very fortunate to have found this website as there really is not a lot of imformation out there. I am going to be speaking to my specialist this week to discuss the symptoms I am having that have increased. He has put off my next CT scan until the end of May and I am not sure that I want to wait this long.
    The arthritis type pain I am having started after I had acute pain in my right side and was rushed to the hospital.( 4 weeks after delivery of my baby) This is where they found the tumor in my liver and that I had two bloodvessels bleeding into the tumor. They were able to embolize the vessels and the acute pain stopped but the ongoing pain is now started up again two months later. The pain in my feet and hands started about three weeks after I got out of the hospital. It started in my feet first and then my hands. At first I thought I just needed better shoes and slippers but this is not the case. You mentioned that your rheumatologist suggested liver testing. I was not aware that there is a direct correlation between this type of pain and liver problems and have been trying to find this out as this pain just seems so odd to me and has come on so suddenly. Any more information that you know on this would be appreciated. I briefly mentioned this to my specialist the last time I was in but he did not seem too concerned by this.
    From what I have read, surgery appears to be the best option for an adenoma and yes my surgeon said that the liver would regenerate itself within 6 to 8 weeks which is very good news. I know that the surgery itself is very big but I am sure I can get through this. How long from diagnosis to surgery itself did you wait? Thanks again for all of your information. Dana

     
    Old 03-21-2005, 09:48 AM   #5
    ronnic
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    Re: Liver Surgery

    There is an autoimmune disease that affects the liver. I am still trying to remember the exact name. I think it is autoimmune hepatis. That disease causes arthritis type symptoms. The rheumatologist wondered if I had it or not.

    I was told on Dec. 3, 2004 I had liver cancer and that it must be treated aggresively. They had me an appointment with the surgeon and oncologist the very next week. Since I have a bleeding disorder I had to be seen by hematology. I also had to have a liver MRI. By the time all of this was done I was ready to have the surgery on Jan. 6. (1 month from the first time I saw the surgeon) It seemed like an eternity waiting for the surgery. And then I had to wait another 3 weeks for the pathology report. But I was too sick during that time to think much about it.

    I have seen the rheumatologist once since that time. She had gotten word from the other doctors about the "cancer" so I think she had thought I would soon be a former patient. But she was pleased I was now back in her care.

    Since you are experiencing pain the surgery may be right for you. (especially with the bleeding incident) You know what that pain felt like and if it is back then you need to insist you know this pain should be looked into sooner than May. Just tell them you would feel better if you knew for sure the adenoma has not changed.

    My local doctor was shocked when he found out they decided the tumors were FNH. He told me they usually didn't grow. Mine went from 4 cm to 8 cm with the addition of 6 more popping up.

    Make them keep a close watch on your liver. The liver likes to bleed and it can be very dangerous. I was very concerned about that for myself. (so was my local hematologist) Thank goodness I really did not know how concerned he was until everything was over. He was pleasantly surprised that all went well. Of course, he talked to the doctors at Duke about my situation. Because of him, they showed serious concern about my bleeding disorder.

    Good luck and take care,
    ronni

     
    Old 03-22-2005, 07:25 AM   #6
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    Re: Liver Surgery

    Hi Ronni,
    Thanks for the information. I spoke to my specialist today and he is waiting on the surgery as he is unable to see the mass due to the hematoma that is yet to totally be absorbed. He suggested that he will wait until May as it may resolve itself and that I may only be left with a scar but he really felt that the adenoma would still be there and at that time would then do surgery. I explained the pain I was still having and if it gets worse I am to call him. For now it is not too bad. I also told him again about the arthritis type pain in my joints and he had heard of this in other cases before. He cannot explain why it happens but said it will resolve once the liver mass is gone. So at this time I wait until my CT scan in May and most likely surgery. I will keep you posted as I may have more questions about the surgery. Thanks for all of your information I do feel a bit better informed about this. Dana

     
    Old 03-22-2005, 11:25 AM   #7
    FANNYLOU
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    Re: Liver Surgery

    SilverB - I am not real sure I understand the incision. Does it go all the way across your stomach and down the right side? I go to see a surgeon on Monday for my fnh. It is 7 x 12 x 12 cm. I don't really want surgery, but I do want it to go away. I haven't had pain in about 4 days, but I have this horrible indigestion like a huge knot is in my stomach. I am not very hungry on thoses days. When I don't have those symptoms is when it really pinches and throbs and burns. Did you have any of the indigestion problems? The hepatologist recomended talking with the surgeon to explore my options. But what other option do you have. I am really scared of the surgery but am always uncomfortable. Not always in pain, that comes and goes, but I always feel uncomfortable. I am overweight, not obese, but I wonder if I lost weight would this help. If I keep skipping meals that shouldn't be a problem. I am up to 2 to 3 alka seltzers a day hoping that the knot will go away. It usually helps for a few minutes and that's it.

    I have 3 children and a tummy tuck would be great but I am chicken when it comes to surgery. I didn't realize that they cut you that big. Please explain this to me more.

    Thanks

     
    Old 03-22-2005, 11:27 AM   #8
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    Re: Liver Surgery

    sorry. I meant to address Ronic not SilverB. I am still in shock.

     
    Old 03-22-2005, 12:08 PM   #9
    ronnic
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    Re: Liver Surgery

    The incision is like a big mountain and valley. it starts at the right hip and moves to the top of my belly. Then it goes across toward the left side with a small dip down. It is a huge incision. It was very uncomfortable at first, but it is getting better now. The doc told me know way would i open it. But i had about an inch of it pop loose after the staples were removed.

    I was shocked when i first saw the incision. I did not know it was going to be like that. When I met with the surgeon I didn't think to ask him about that, so it was a big surprise. My bikini wearing days are gone now!!!!!!

    I have never really had trouble with indigestion. I felt a nagging discomfort on my right side, but i really think that may have been my gallbladder since that feeling has gone.

    Fannylou if you have the surgery stop taking those alka seltzers. Alka seltzers make you bleed more. (like aspirin) And the liver has a tendency to bleed more than other organs.

    I am not sure if there are other options for FNH other than surgery. I had the surgery because they told me it was cancer. So I was never presented with any other options. I am in a watching mode with the other smaller tumors. I pray they do not grow.

    Good luck and let me know if you have any other questions.

    ronni

     
    Old 03-24-2005, 03:22 AM   #10
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    Re: Liver Surgery

    Dear Ronnic,

    Thanks so much for taking the time to post so much detail about your surgery. Even though it's scary to read, I would rather have an idea what to expect than to go in with no idea.

    I saw my liver surgeon for the first time yesterday, but I'll post what he's said under the FNH topic for now for anyone following that. Then I'll post about the surgery when that happens and I'm able to.

    Again, thanks for sharing. I hope you enjoy a fast steady recovery and see the full benefit of what you've been through soon.

     
    Old 04-14-2005, 01:42 PM   #11
    Nancycasc
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    Re: Liver Surgery

    My liver resection..

    I am a 46 year old woman who in november of 2004 starting having problems keeping my food down and always felt nauseaus. I went to my Dr who sent me to a surgeon. I was sent for a CT immediatly and called back the next day. I was told that I had a Huge tumor on my liver. Then I was referred to the Liver Transplant Section of the Medical Unniversity of SC. Labs were drawn, an MRI was done, another CT.. I have had so many test I have lost track. Anyway, I was put in the hospital and had surgery on Dec 8, 2004. It turned out the tumor was 15 pounds and 2/3 of my liver had to be taken along with my gallbladder. I was so sick and in ICU for a week. I only remmeber being there for 2 days as I just lost that time. My husband and mother tell me I was on a ventilator and very very sick. The day I was to go home a PA made the error of pulling out the staples in my incision. It opened up wide! My incision is called a mercedes.. its the inside of that symbol.. it goes from between my breasts down to just above my belly button and then from there as a down angle to either side of my belly. Its huge! I have had to do wet packs on the opening ever since. I am diabetic and we don't heal as quickly but here it is 4 months later and it is just about done healing. I have never been so weak or had so much pain in my life as since I had this surgery. I have constant back pain. The day after my surgery i was taken back into surgery and had a shunt put in to drain the fluid in my abdomen. then a few weeks later had to return for outpatient surgery and have it removed. then of course.. test and test and more tests... as soon as this incision is healed i will be starting chemo. My oncologist wants to make sure that no cancer remains.. He says that will be about 6 months.. so when i am done this will be a year of my life..
    i am back at work, but it takes every bit of my energy. I was lucky to have my mom come stay with me for 2 1/2 months to take care of me and my family. The prayers helped I am sure as I had people praying all over the world for me.. the people I work with have been awesome.. Our employer gave out grocery store gift cards at christmas and i recieved about 15 of those from my fellow workers.. some people pitched in and brought us christmas dinner.. some have given me PTO time so that i would continue to get paid during this whole thing, flowers, plants and gifts.. my coworkers even took the christmas list of my daughters and went and bought everything on it for her... I am so blessed.. wow.. I am alive and have awesome friends and family...

    i am here if anyone has any questions or if there is anything i can do to help.. prayers are being said daily for so many here...


     
    Old 04-15-2005, 07:26 AM   #12
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    Re: Liver Surgery

    Nancycasc


    Wow! You are a remarkalbe woman. I prayed early this morning for the Lord to send me some encouragement and you are the answer to my prayers today. I have a large tumor (I don't think as large as yours) 8.5 x 12 x 7.6 cm on my liver that is not cancer (according to the first biopsy) that has been dx as adenoma or fnh. My first visit with the surgeon and he said it has to come out. He is a firm advocate that a biopsy can't tell you everything, but then he is a surgeon and that is how he makes his living. I am in GA and using the Liver Transplant Center at Emory University for my care. I go next week to have a stress echo, pulmanary function test, see a nuerologist and to have another CT and Biopsy of the normal liver tissue to be sure that it will regrow and it healthy. All of this is preop. I am very scared of the surgery. I really don't want to have to do it but the fact that I am other wise healthy and reasonable young (32) I have a much better chance of recovery more quickly. But I have 3 small children that are very active and I don't know that the down time is going to be an easy task. My husband works swing shift and that already makes life hard at times. The incision sounds really scary. I haven't had much of a figure since I started have babies but the only part of my stomach that doesn't have stretch marks is the part they are going to cut wide open.

    Why were you so sick and in ICU for so long. They keep telling me the ventilator will be gone before I am out of recovery and maybe only one night of ICU. Any where from 6 to 8 days in the hospital. Should be up walking in a couple of days. Was it you diabetes that made recovery so bad or the fact that yours was cancer or just the surgery? I am scared but want to be prepared for reality and not painted a pretty picture. I am looking at a possilbe 1/2 liver resection, hopefully less, but I really want to be prepared and know how to prepare my family.

    I am so glad that you have such a great support group. That is the most important medicine for recovery. I watch a coworker/good friend fight inflamatory breast cancer this past year and that is what has made the difference in her recovery and she'll tell anyone who ask. God bless you and all of the good christians behind you.

    FannyLou

     
    Old 04-16-2005, 05:04 PM   #13
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    Re: Liver Surgery

    FannyLou..
    I am so happy to be able to be of some inspiration to you.. I am truly blessed with not only the love of the Lord but by having awesome family and friends..
    I won't lie to you.. its an ugly scar and much bigger then I ever thought it would be.. it wouldn't be as bad if the staples had not been taken out too early.. but then I am alive.. so the trade off is worth it..
    I really don't know why I was in ICU for so long except until I got sick I had been a smoker for many years.. so that may of had something to do with it..
    I was up walking.. but the worst thing through this whole last 4 months is my energy.. i just don't have it.. especially the first couple of months.. i couldn't drive.. i had to use the electric carts to get grocerys.. and the back pain i have had still continues..
    If you can get it.. please have someone to help you when you get home.. someone that can take care of your family and cook etc.. when i was first recovering it was all i could do sometimes just to stay up long enough to eat a meal.. then as time went on i could do more.. I work in a ER and its busy so i can now make it through a full shift.. but to be honest that is what has surprised me the very most is my lack of energy.. My c-section was a breeze compared to this...
    when i say my prayers tonight you will be included.. my only suggestion is prayer and more prayer..

     
    Old 04-22-2005, 06:49 PM   #14
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    Re: Liver Surgery

    Nancycasc, I had read your story last night. In part it is what inspired me to post mine. It is VERY inspiring. I don't usually get on these sort of things & when I do I usually read not write. When I went thru all my fertility stuff I tried it a few times w/not much success but the stories have read here have really helped. I just wanted to talk to someone who understands & maybe knows more about this than I do. I am trying to stay strong for my family but have been taken utterly by surpise & really don't know what to expect or how serious/bad this really is. Frankly I am bewildered & quite scared inside.
    Thank you for your words of encourgement.
    Staying strong.
    Lionleo

     
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