Topic: What to expect post surgery

My sister was diagnosed with a stage I (possibly II) Klatskin tumor. Her Drs. in Sloan K. are planning for a total liver resectioning next week. We want to know what we can expect in terms of pain, ability to walk and get off the bed, infections...

Can anyone who recently went through all that help us out so that we can gear up for the storm. The drs. are very hopeful for at least 3-4 good years at least so we're trying to be as positive as possible.

Thanks.

Re: What to expect post surgery

Belle... I had a total lobe of my liver removed and gallbladder as well.  The pain can be controlled They had me up and walking in three days.  Discharged in 8 days.  Recovery took me about 3 months for me to be back to work full time.  This is very individual and ideal.  Everyone is different and overall health and age does make a difference.  Some people have gone home within 7days.  The chance of infection is there as with any surgery. My self Ideveloped an infection that set me back a week almost two. This was after I got home.  It is monitored very closely. And you have to monitor your self with regular temp taking and watching out for chills or sweats and don't hesitate to be a pest.  I went home with a drain tube and bag to help prevent infection but my tube got all twisted and would not work properly which most likely caused the infection.  Others have had no problem at all.  March 16th this year will be nine years, so the 3-4 years  you were told definitely can be longer. Each person and case is different.  This is an excellent site to get information and the members will tell you like it is as far as experiences of their own and what they have tried as adjuvant therapy and so on.  From what I have read and posts from others Sloan kettering  is abn excellent facility and very knowledgeable of this type cancer.  I know you said any recently but I had to to share and make a point the satistics have been beaten time again.  Positive attitude, advocate when you know something else should be done, and don't hesitate to get a second opinion if you feel it is needed. The fact that you have been told it's resectable is great news for this community. All the best to you and your Sister.
God Bless and prayers for a speedy recovery!  Please keep in touch and don't hesitate to ask any questions.  I'm sure others will respond as well.
Jeff G.

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

Re: What to expect post surgery

I had my surgery last January. Pain can be controlled, (somewhat for me). I had problems.
1) Problems with anemia until I finally got a blood transfusion 3 or 4 days after surgery.
2) Severe constipation. PLEASE eat when the dr. says to. I was so sensitive to smells, that all food produced a gag reflex and I did not eat for so long my bowels stopped working. When I was finally able to eat, nothing would get them working again so I spent an extra 5 days in the hospital being given 3 different, but very strong laxatives to get things going again.
3) Got an infection after being home a little over a week and then I had to head back to the hospital for another weeks or so.

Bring a pillow to the hospital so that you can hold it against the incision. It helps with the pain, particularly when coughing.

Get up an walk as soon as possible. With my problems, I was only up and walking on day 5 and that was because my doctor challenged me.

I dont know your sisters symptoms or how close you are...but, I had terrible juandice and itched everywhere. After surgery, my leg hairs had grown in enough that they were itching and causing the itchy feeling from the jaundice to kick in overdrive. My mom shaved my legs for me because the incision prevented me from doing so. Instant relief!

Your sister will start to get sensations back in here stomach several months after surgery. These can be from a mild, numbness like when your foot falls asleep, a feeling of hot or cold, or an intense bee sting feeling.

Ask the doctor about getting some antacid type medicine as the new plumbing causes a "bubbly" feeling that isnt so nice.

Peppermint tea helps some with the upset stomach after surgery. My nurse was a big pusher of it.

I am the worst healer and it took me 9 to 10 months after surgery before I felt like my old self, though I was still at about 50% physical strength and I would get tired after about 15 minutes of real play with a child.

Best of luck.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: What to expect post surgery

Belle,

The fact that your sister was diagnosed so early -- Stage 1 is a great advantage.  I'm sure that will be helpful in her surgery and recovery.

I was diagnosed at Stage 4 in November 2005.  When I had my surgery, they took out my right lobe of the liver, the gallbladder, appdendix, parts of the diaphram, and omentum.  I was in the hospital 8 days. When I was sent home,  I had an external drain to take care of.  That was removed about a week later. It was very painful when they took out the drain.   I didn't have any infection problems.  But I remember how hard it was to eat after the operation.  Just the smallest amount of food or water would fill me up. But gradually, it got better.  I was able to go back to work after 2 months.

I think it really helps if you can get your sister walking around as soon as possible, even if it's just up and down the hospital corridors.  It's so easy to become weaker as you lie around there.  It's also nice, when you get her home, to have a TV near the bed for times when she doesn't have the energy for much.

I wish you and your sister lots of luck.  Jeff is right,  attitude is very important -- and having the loving support of your family.

G

Re: What to expect post surgery

Belle,
My klatskins surgery was similar to much of the above.  Some thoughts or emphasis.
I was up the next day sitting on side of bed and standing for a few minutes.  tough but worth it.  Walked the hallway the second day.
Ascending Cholangitis is a common infection.  Watch for the fever.  Can be treated with antibiotics but can get bad quickly!  I'm now on a maintenance dose of a sulfa drug.  Used antibiotics for 3 years but switched to try to avoid developing resistence to antibiotic.
Stool softners are essential! Start early.  The constipation from narcotics was awful and so easily avoided.  Docs really let me down on this one.
I was home at about day 9 I think.  Walking every day.  Cleaning up after the drains.  Get good training for caring for the drains until they can be removed.  This is another common source of infection.
I didn't want to eat but needed to.  Find foods she'll like.  We did smoothies with fruit, ice cream, spiralactone and some other goodies in the blender. 

Walk,  keep the lungs working and blood flowing.

Best of luck to you and your sister.

Courage,
Peter

Re: What to expect post surgery

Hi Belle, the fact that your sister has Stage I is a positive.  Charlie had about 60% of his liver removed in 11/07. In hindsight, the best advice I could give is like Peter said, start on the stool softeners asap.  Ask the doctors for it if you have to. The morphine or other pain med really slows that down.  And walk as soon as you can and keep walking a little more each day when you come home.  Charlie was up walking the 3rd day after his surgery.  He didn't want to, but they made him!  He came home after 6 days.  He had a morphine pump at the hospital, came off that and sent him home with oxycodone, which we had to get a few more refills of.  He doesn't take any pain med now.  He started feeling better about 2 months after the surgery and is doing good now.  Charlie said to try to have a recliner to sleep in when your sister comes home because he said it's He-- to try to lay down flat in bed and rest.  Oh, and at the first hint of pain, take a pill because if it starts getting bad before you take something, it's harder to get under control.  I hope this helps.  I don't know how old your sister is.  Charlie is 52 and was in good health when diagnosed last May.  Be strong and take care of yourself.

Carol

Re: What to expect post surgery

Belle:

As the postings above indicate, your sisters Stage 1 is exactly what you want to hear if you  have this type of cancer.  My friend also had surgery at Sloan Kettering in August of 2007.  His ended up being stage 2A.  His surgey went very well.  We were ready to fly back to Richmond after 8 days and he became sick the morning we were being released.  His bowel had collapsed and he needed to have immediate drainage.  As result, on the spot a tube was inserted through his nose into his stomach for 2 days.  This delayed his coming home by an additional week.  Thank God we did not leave as planned because it would have been a very serious situation.  Ron was up walking 2 days after his surgery and actually felt the pain was not as bad as he had anticipated -- considering how large a scar he has.  He worked out of his house after the first month and after 8 weeks was back working full time.  He is a salesman so he was back flying up and down the east coast.   He now has gained the 25 pounds back he lost and looks great.  All of his blood work looks good.

He has just finished 4 months of adjuvant chemo - Gemzar.  He tolerated the chemo quite well and had zero side affects.  He actually worked the entire time he was having chemo.   He had clear margins following surgery but his oncologist thought he should follow up with chemo anyway.  He has finished chemo (hopefully) and will be going to the oncologist on Monday for the results of his follow-up CT scan.

Doctors are now taking a much more aggressive approach to this type of cancer.  From all the hundreds of articles I have read there is a real mixed opinion from doctors on "why this cancer returns".   One doctor will say lymph node involvement means very little and another will say it means everything.  One Asian doctor clearly thinks "absolute hemostasis" during surgery is the key if clear margins are received.  The more I read the more confused I get. 

Ron's surgery was classified as agressive and complete.  His surgery consisted of "the entire extrahaepatic biliary apparatus and the left liver en bloc with the caudate lobe.  A porta hepatis lymphadenectomy was also performed.  Biliary enteric reconstruction was achieved with separate anastomosis to the right anterior and posterior sectoral ducts." 

Ron's surgeon at Sloan Kettering was Dr. Journigan.  Which surgeon is your sister using?  Sloan Kettering was absolutely wonderful -- cannot say enough good things about it.

Your sister will be in my thoughts and prayers.  Please let us know how things go.

Sorry posting is so long -- got carried away...

Nancy

Re: What to expect post surgery

Thank you all for your postings. Dr. Journigan is my sister's dr. and we're hoping and praying for good things. She has an infection now... even before surgery... so like I say we're hoping for good things. Thanks again for all the suggestions and tips because all the little and big things add up. Thanks.

Re: What to expect post surgery

Its been Two years since I had whipple surgery. My cancer is gone ,but I  have a lot of trouble with charlie horses in my stomach.  Has anyone else have this problem?

Re: What to expect post surgery

Hi Jesse.  My husband had a Whipple 3 1/2 years ago.  He gets a little pulling in the stomach but not like a muscle cramp. Could it be scar tissue?

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: What to expect post surgery

Oh man, Dr. J did my surgery too. I thought it was worth noting for anyone else who happened to check this thread, he's the best if you're going to Sloan Kettering! <3 And his nurses were always so helpful when I called the office afterwords freaking out about stuff, lol.

- Katie smile

Once you choose hope, anything's possible!

Re: What to expect post surgery

My mother's recovery after surgery was pretty good. My mom is 63 would go to the gym everyday before she was diagnosed (Just as a background).
She was up and standing the day after surgery.
Walking the next day (outside in the hall) nothing crazy.
The sent her home by day 4.
She wasn't up and walking around her apartment until about day 6.  It has been 3 weeks and she is still pretty tired but back at work.  She was in excellent shape before the surgery and they kept telling her that is why she recovered so well.
The first night back from the hospital  was tough. My mother was having a lot of pain and not doing well with the pain meds. Major nausea.  She slept on the recliner for the first couple of nights home because laying down was not good.
By day 7 she  changed to just advil to manage the pain which was really good because then her appetite came back.  2 weeks after the surgery she was feeling a thousand times better. She would get reflux and gas but found it better to eat smaller meals more frequently.  Overall, she is doing really really well. Everyone is different.  The important thing is to listen to your body. good luck with everything. --danielle