Topic: I had a liver resection in 2007.

I was originally diagnosed with Hepatosecullar Carcinoma but when the tumor was biopsied it turned out to be clolangiacarcinoma.  I feel very fortunate that the liver rejuvenates itself as they took 70%, removed my gallbladder and the tumor invaded the inferior vena cava to my heart.  Three inches of the artery has been replaced and after a one year recovery, I went back to work full time in June 2008. I feel good but have various "bumps in the road".  One being, my blood pressure goes up when I have to go to the doctors.  My feet new turn blue on occasion, I now have many, many veins showing from my ankles down. ( It's funny to see, as it is a defined line and I determined the line is from the hospital leg wraps that were placed around my legs to keep the blood flowing and to stop blood clots.)  It worked great for my legs, but now I have these UGLY, TINGLING, HOT, ankles and feet.  I did get a blood clot in my arm from the PIC line.  Despite the above complaining, I feel extremely fortunate to be here writing this.  I look forward to reading other introductions and to become an active member of this website.

Re: I had a liver resection in 2007.

Welcome Gale,  Glad to hear of your successful operation and ordeal with CC.  That Vena cava was about as close as you could get to having some serious complications. Wow!  Unfortunately side effects of such a major operation are more than not unavoidable.  It's great to hear your back at work and I wish you a continued positive future.  May I asked what part of the world did you have this delicate surgery.  Other members are always looking for good surgeons.  Did you do any post op chemo or radiation?
Again welcome to the site and please feel free to jump in at anytime.  The greater the interaction, the broader our knowledge becomes.

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: I had a liver resection in 2007.

Welcome, glad to hear you are doing well.

Also, you came to the right place because this is the complaint department, cholangiocarcinoma is a coward and wouldn't set up its own complaint department so this one had to be set up so feel free to let it all out and complain here, you are among friends.

Patty

Re: I had a liver resection in 2007.

Hi Gale,
Thanks for stopping by!  I'm wondering about the IVC thing, too.  My tumor is wrapped around the IVC, and for that reason they stopped trying to resect the tumor.  How were they able to do a resection on you with the IVC involved?  And like Jeff asked, where was your surgery done and who was your surgeon?  I'd like to contact him or her to get a 2nd opinion on my case.

Thanks,
Lisa

Re: I had a liver resection in 2007.

Welcome Gale and you complain all you want....don't ya think you earned that right!!! As long as everyone complains we know they are hanging with us and we think of them not as complainers but as heroes!! Keep up the good work and I would not be too surprised if someone on this site will have an answer for you.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: I had a liver resection in 2007.

Oh my, I'm so excited at the response.  With the HIPPA rules, I've had no one to commeserate with!  I was originally told by the liver surgeon that he would not operate.  Being devestated, I don't remember what transpired after while sitting in his office BUT he contacted a co-worker (his words).  It took one month to coordinate the operation.  There were three surgeons, a liver surgeon, vascular surgeon (who I never met) and the lead surgeon was the director of transplants.   The operation was 8 hours.  During the surgery, the artery was "rerouted" through my neck while the surgeons removed 3 inches of the artery and replaced it with a synthetic material.  I was put into a coma (Okay, I'm crying now... how lucky to have the liver rejuvenate itself!!!!!!!!!!!).  The surgery was done at the Dartmouth Medical Center in Lebanon, New Hampshire.  It's a teaching hospital for Dartmouth College.  I suspected my operation was unusual but the posting confirmed it.  This website helps validate what I'm feeling and it's great to FINALLY talk to other WHO KNOW WHAT I'VE BEEN THROUGH.  I have questions.  I am very careful about the over-the-counter medicines I take but for a headache, should I take Tylenol or Advil?  I see I need to complete my profile.  Fatigue is a major issue.  Is this something I'll be dealing with the rest of my life?  Yes, I'm back to work full time, but I come home and I rest on the sofa and dinner is now a chore and I love to cook.  Any ideas?  I do attend a cancer support group which has been wonderful.  I have chronicled my experience (which has turned into a book).  I was having nightmares about death, blood, and the writings have gotten rid of them.  I highly suggest this to anyone who experiences nightmares.  Time to get ready for work.  Chat later.  Thanks again for the support.

Re: I had a liver resection in 2007.

Hi Gale,
I'm so glad to hear you are doing well and are getting stronger.
I was told to take Advil because it metabolizes in the kidneys rather than the liver.

Re: I had a liver resection in 2007.

Thanks Lisa,
I didnt know that. Advil it will be....or walmarts version.

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: I had a liver resection in 2007.

I will switch to Advil.  Maybe that's why I've been feeling lousy due to taking Tylenol.  I took tylenol while recovering but now that the liver is grown back, I'll switch to Advil.  Thanks.

Re: I had a liver resection in 2007.

Thanks for your input.  Has anyone had problems with scar tissue?  Resections come with a very large incision.  I've had pain back in May and it never really got addressed, except that the possibility of scar tissue grew to the point that it needed room and my insides had to "shift" to make room for the tissue.  The pain went away.  The doc did find a small hernia.  I'm on Ecotrin a day due to the IVC replacement.  Will I ever get my energy back?  It's been 1 1/2 years since my resection and I've made peace with the fact that my energy will not return to the way it was before.  I don't like being tired.  The stress of it goes to between my shoulders and neck and causes headaches.  Sorry to moan, I'm tired of being in pain around my neck and I have no energy.

Re: I had a liver resection in 2007.

Hi Gale,
Don't worry about moaning. This is the place for it. I'm sure friends and family get sick of it and it helps to get it off your chest. I've had 2 resections (2nd one failed- too close to blood vessels-damn it)and have a great L- shaped scar and my abdomen has never been the same since. Mind you I am 53 and going thru menopause so my shape would be changing anyway but I think surgery has made a major contribution. Having your IVC involved is major stuff and it's great you've come thru it like you have. Energy levels are a problem. If you did what excercise you could I'm sure it would help. But that's easier said then done I know. I used to be super fit before I was diagnosed and excercised heaps and even used to teach aerobics but I just can't be bothered any more. My perspective to some things in life has definitely changed and these days if I don't feel like doing  something I don't.

Re: I had a liver resection in 2007.

Judy:  Thank you sooooooo much.  I found out I have bone spurs on my vertebre in my neck.. no wonder it causes pain.  It's soooooooo good to chat with someone with another resection.  In reading most of the postings on this website, most doctors won't operation.  I had a feeling my operation was rare.  Did they find CC again?  WOW, two resections!!! My admiration goes to you.  I too had fitness in my daily life.  I walk when I can.  When was your operations?  My abdomen is L-shaped also.  The day of my operation I took off my estrogen patch after being on them for 12 years.  I found that if I watch what I eat and keep the stress down, the hot flashes and night sweats subside.  I really wanted to know about energy levels in other. THANK YOU, THANK YOU for confirming it.  I loved aerobics also.  The owner of the fitness business has been in touch but had to tell her I just can't anymore.  Judy, it has been so wonderful to get your posting.  Let's keep in touch.  Gale.

Re: I had a liver resection in 2007.

I guess I'm dealing with scar tissue, too, from a failed resection.  I've been having pain in my liver, and the scans show the tumor hasn't spread - Yay! - but the pain is probably from scar tissue.  I also used to be fit, but now I'm fat, hahahaha!

Re: I had a liver resection in 2007.

Hi Lisa:  Yeah, I've made peace with the fatness.  Horray - the tumor hasn't spread for you.  How often do you go for checkups?  I had bloodwork and CTScan last week and I see the oncologist tomorrow with the results.  I hold my breath!  I go for bloodwork every three months and CTScans every 6 months. Let's keep in touch... Thanks again, Lisa.  It's starting to get cold here in New Hampshire - How's the weather, your way?

Re: I had a liver resection in 2007.

Hi Gale, it's amazing to read your story, it really mirrors my Mom's. She recently had surgery for CC, she is 57. We were told there might be a chance that the resection might not be possible, I guess that happens a lot with this cancer, they discover things are different once they are "inside." We went into surgery with this thought in our head, we were SO NERVOUS, but it was a success. It took nine hours, they had predicted five so it went just a LITTLE over! They removed a large tumor (9cm), the whole left lobe of her liver, and her gall bladder. Her team of surgeons said it was the most complicated bile duct surgery they have ever done as they had to rebuild all three of her bile ducts. Anyways, reading your story makes me SO happy as you are obviously doing well a year-and-a-half later. Her surgeons have warned us that having such a large tumor almost always means a poor prognosis, they told her the surgery wasn't so much a cure as a way to extend her life, so as much as we are happy the resection went well, there are always those dire words hanging over us. Can I ask how big your tumor was, what stage you were given? I just want to hear that other people have had "big" tumors and are still here, winning the fight. I hate this disease, I really do. My Mom is truly my best friend, she is one of the most kind, wise, hilarious, irreverent, interesting, warm women I have ever known, I will walk with her through this no matter what. Thanks to you and anyone else that has any info for me, we're new to this dreadful disease...

Re: I had a liver resection in 2007.

Hi Nikki, glad to have you join our little club.  I hope the best for your Mom!

Gale, the forecast here is for rain, followed by showers, followed by more rain.  If you were a Northwesterner, you would know what that means, haha!

I haven't made peace with the fatness yet, but then again I think the reason I want to be thin(er) is to attract a man, so that seems like a rather superficial reason to want to be fit.  Ha - no man would want to get involved with a woman with cancer anyway.  So really the weight gain shouldn't bother me, but a lifetime of angst over my weight is hard to overcome.

Re: I had a liver resection in 2007.

Have just registered on this site, will be getting my first "chemo" treatment Dec. 1st, what can I expect?

Re: I had a liver resection in 2007.

Thanks so much for responding to my postings.  Nikki66, my tumor was 10.3CM (about 5 inches) I was Stage IIIB.  I had only one primary (ONE BIG, HONKIN' TUMOR)  Mine was in my right lobe.  It was an intrahepatic cholangiocarcinoma.  It took a month in the hospital, my Mom took care of me (You used wonderful adjectives for your Mom, diddo for my Mom), along with my husband, son and friends.  Get lots of help when she is home from the hospital.  Caregivers NEED lots of help!!!!  If people don't offer.... ask them!  I found many people don't know what to say, so they stay away but given the question to help, they are there for you in a heartbeat.  I went back to work part time four months after the operation and went back to work full time one year later.  Let's keep in touch. Gale.

Re: I had a liver resection in 2007.

Lisa:  The 16 years I was single after my divorce, I found it hard to date without cancer.  I met my second husband via a blind date.  We've been married 13 years.  Got a friend, who knows a friend?

Re: I had a liver resection in 2007.

Swarty!:  I never went through chemo, there are other introductions that you'll find helpful.  I just know not to go through it by yourself.

Re: I had a liver resection in 2007.

Hello Swarty....thanks for joining.  What type of chemotherapy is being considered for you?

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Re: I had a liver resection in 2007.

I too had a 6cm tumor in my right lobe, wrapped around the IVC. I was told I was stage IIIB and inoperable. However, I talked my surgeon into recommending me for a liver transplant. He sent me to Mt Sinai Hospital and Dr. Suku Emre who said a resection was doable and preferable to a transplant. The tumor simply had not invaded the IVC so it simply pulled away when Dr. Emre cut it. That was June 2007.

I had an excellent year of health until July 2008 when scans showed the CC had returned in the liver and lymph glands. I am now at Mass General Hospital in Boston getting a chemotherapy regimen of Oxcalliplatin and Gemzar. I am advised that the best hope is a 40% chance of slowing the growth.

Thanks for sharing your stories. It is helpful to know we are not alone.

P.S. Dr. Emre is now the head of the Transplant Unit at Yale University Hospital.

Re: I had a liver resection in 2007.

Charles, nice to  meet you.  My CTscan last week showed a hypo density 3.2cm.  It's right at the incision point where the surgeon replaced part of the IVC.  The oncologist feels it's scar tissue but I have an appt with the lead surgeon of my operation, who is the Director of Transplants at Dartmouth Medical Center.  My blood work came back with NO elevations.  I came close to getting a transplant last year but the resection was successful.  This website has taught me that my operation is VERY rare.  Others on this site have had two resections.  Keep in touch. Gale