Topic: New member, father was diagnosed with klatskins tumor

Hello everyone glad to have found you. My name is marco and back in 2012 my dad at 74 had a ultrasound done where they found out he had a klatskin tumor in his bile duct. 2 weeks later they operated and removed his bile duct, lymph nodes, gall bladder, and half of his liver. No chemo was given. The surgeon said they removed everything and the tumor was removed. Wow we were happy that he survived the surgery and the cancer was gone. December 2012 he had a mri it showed that the cancer had spread to his liver(section 8). So january 2013 he started chemo he did 2 rounds of chemo and the second dose sent him to the hospital where he was hooked up to ivy, and returned home a week later. I then found out about srbt radiation so I took him to princess margaret hospital so the oncologist said he could do the treatment. So it was hard for me to choose chemo or radiation, here my dads life was in my hands. They have no figures on  srbt if it would work. So we did the srbt 5 doses. After treatment he had no issues. After we went back 3 months later the ct shows that the area is still swollen and that they cant see, so on November 27 he will do a mri, for the results. Looking for people with the same issues as my dad has, to determine what is best to do. Is chemo good or is it better to live with the cancer and enjoy every good day of life. thanks and i will pray for everyone. i am new to this site so if you respond let me know how to get back to you and how to find people with klatskins.

Re: New member, father was diagnosed with klatskins tumor

Hi Marco. To Chemo or not is one of our biggest questions and it is a very personal choice. When my Teddy was DX he was 73. He had a Whipple Surgery and all was good for 3 years. Actually 4 diff ONCS/Radmen said no to chemo/radiation right after surgery as they said where his CC was it would not help. In the 3rd year it returned to the same place and again we got several opinions and all said no again. One ONC said if you were my father I would not put you through anymore but he did order Cyber Knife which bought Teddy 2 more years and again it returned to the same place. Then his ONC said we could do no more but he offered Palliative Chemo and Teddy said how much time will this buy me. The ONC said  an extra month over the 6 he had predicted, Teddy sat quietly for 2 days thinking. He decided no as at 78 he opted for quality of life over quantity. The ONC was right on the mark, 6 months almost to the day he predicted. Now, everyone is different and different circumstances but to me the 2 most important questions are  1) If I was you father what would you have me do and 2) how much time will this buy me.
I hope it helps to hear another's story and remember there is NO wrong decision. Best wishes and please keep us posted. Be strong!

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: New member, father was diagnosed with klatskins tumor

Marco,
Glad to see you posted here and I'm hoping you can find someone who has experience with the stereotactic radiation. Lisa Craine I believe has had it several times and is very helpful in general with CC questions.
Don't second guess your decision to guide your Dad toward the rad as oppose to the chemo. Chemo was just too hard on him that first go round. There are many different kinds of chemo and he may tolerate some better than others. My sister tolerated Xeloda well. Ultimately, it's your fathers desires that should drive how hard and long he wants to fight. You're a caring son, trying to do what is best.   Please be proud of the help you've given him and stand by the path of treatment you've helped your dad with so far. Mostly he needs love and presence. Keep us posted when he gets the MRI.
Sincerely, Willow

Willow

Re: New member, father was diagnosed with klatskins tumor

SENSITIVE subject  ;think if you want to know before you start reading.












Hi,

" Is chemo good or is it better to live with the cancer and enjoy every good day of life."
To be honest:
If I were at your dad's age. I will choose no chemotherapy and enjoy every good day of my life ,sitting on the bench in front of my house and watch the beautiful things go by.(winter,spring,summer and autumn leaves.)
Chemotherapy is never a good thing to begin with, even if it kills cancer and provide a few of us to live longer.
Everybody can tolerate chemotherapy short term, but  for long term usage, like years or the life time,for me it is inhuman.I believe the longer a patient on chemotherapy, the weaker he or her  will become  to fight against the cancer as well as other common disease; and  of course this will affect the outcome of both the quality and quantity of life.t This is just my opinion only and not for purpose of guidance if at all.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member, father was diagnosed with klatskins tumor

HI Percy, my friend...I forgot to mention above that after Teddy made his decision, no chemo,  right up to the end, he NEVER regretted it. He was a strong little guy both mentally and physically and  had made his Peace.  So, I totally agree with you. And you dear Sir are also a very strong and a very kind man. I believe that God knows we need you around for very long time! And anyway reservations are sold out for years at Teddy's Sicilian restaurant and I have already warned him that when you 2 meet, you are going into competition with your own restaurant. No competition really as I just know you will be best friends. But, we have lots of time yet. At least I am praying for that.

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: New member, father was diagnosed with klatskins tumor

Thank you everyone with your thoughts, i found this website by accident and im happy i did. I dont know how to respond back but lainy it sounds like the treatment my father had was like what teddy did( cyber knife). My father had srbt which is they zapped his tumor with precision radiation. After the cc returned just wondering why the cyber knife couldn't be done to teddy again. everyone have a great weekend, Marco

Re: New member, father was diagnosed with klatskins tumor

Good question Marco. I believe because you cannot keep going over the same place and this was the 3rd return in the same place. I also feel they/we  knew  everything that could have been done was done he had been through enough. He put up a great fight from 73 yrs old to 78. Teddy had an aborted Whipple after 4 hours in surgery, then 10 days later had a double ecoli infection that took 10 days to heal, the real deal Whipple and a few weeks later developed a fissure inside along the stitching and ended up in rehab for a month of nothing but water and a feeding bag to heal the hole. Finally he started healing from it all, and things were relatively calm except for infections about 2 X a year and had to go to the Hospital for those. After those 3 years the CC returned again and that is when he had Radiation to shrink the tumor then the Cyber Knife. That bought him 2 more years. And then enough was enough. But remember almost every one is different. Again I believe the best thing is still to ask the ONC those 2 major questions.  1) If I was you father what would you have me do and 2) how much time will this buy me. Hope you have a nice weekend.

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: New member, father was diagnosed with klatskins tumor

Hi Lainy i was wondering when teddy did the cyber knife rad how did the scan show was the tumor gone, or was it there but didnt grow for 2 years. Any info on that experience would be helpful. thanks marco

Re: New member, father was diagnosed with klatskins tumor

Hi Marco. Remember this was 8 years ago. Teddy was 73. After his Whipple he had clear margins, no nodes it was all very clean. The CC returned to where his Duodenum used to be 3rd year out. So he was now 76 and 4 ONCS/Radmen said that because of where it was and came back to the same area chemo would not work (perhaps things have changed now) but they could try Cyber Knife. It was terrific, a Miracle. His tumor was 8 MM had grown pretty quickly as he had CT/PET scans every 3 months. LABS every month. So he had 25 Radiation treatments to bring that little monster down. Worked! Came down to under 5 now he could Cyber. It worked like, wow! totally CLEAN AGAIN.Then 2 years after that it again returned same area and they all said no more could be done. Onc offered Palliative care and after 2 days of thinking it over he said no. He opted for quality of life as the ONC told him it would buy him a month. We didn't regret any of our decisions. We had the best ONCS and Surgeons and T had the best attitude ever. The C.K. bought us 2 1/2 years. So he did have Scans but I just think it did not show at first and he NEVER complained of pain at any time ever. I believe they knew in January of 2010 and made a decision not to let us know that no more could be done until June of 2010. At first I was angry then I thought why should I be angry? They gave us 5 months of just living and getting our business done and being with family.  Is Dad considering Cyber?

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: New member, father was diagnosed with klatskins tumor

Hi Lainy 8 years have past and you are on here, god bless you for helping all us with your experience. My father had a tumor in his bile duct 2 years ago the surgeon removed half of his liver, gallbladder, lymth nodes. Everything was removed and no sign of cc. one year later the scan showed a tumor on the top of his liver(section 8). The surgeon said operating on the liver is not good a second time, and that the original cancer had spread. So here in canada everything is covered by the goverment. So i feel that maybe because my dad is old they dont want to fund any more money on him because the cancer had spread. Lainy have you heard of anyone having gone in again in the liver to remove another tumor, basically a second surgery. I feel that the tumor is on the top of his liver so why cant they go in and cut it out. My father had srbt radiation. It sounds like cyberknife. The onc are able to hit the tumor directly with radiation, without touching good tissue. We find out the results in december. So after teddy had the cyberknife the scan showed nothing in that spot, and two years later it appeared back in the same spot. thanks lainy

Re: New member, father was diagnosed with klatskins tumor

Your are most welcome, Marco and always keep in mind it seems everyone is so different.
Teddy had his Whipple in Sept. of 2005 and this site came out in January of 2006. I could never have got through the next 5 years without the help and guidance from this family. I would not give it up after Teddy passed. Here is a good one. A few months ago I kind of took a little dive with things I am going through and I decided I needed a break from here. Say like 2 weeks because I know me and I know how I pull myself up and out so....ha, ha..after 2 days I was back on the site, I actually had withdrawal. I just love this family, believe me it does more for me than I do for you guys.
BTW, I believe you can have more than one surgery on the liver and actually was talked about on here last week. Teddy's CC never reached his liver until the very end.

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: New member, father was diagnosed with klatskins tumor

when someone gets told the bad news, I guess that person feels like it is a death sentence. As a son i feel how could i help, but as my father was told 2 weeks later he is in surgery. then it was good news but 1 year later it came back. 2 weeks after that we did 2 doses of chemo, then 2 months later we did the radiation treatment. So talking to people like yourself is great, because the other side of people, surgeons, onc, etc really dont know how to. So it is great that you continue to be part of this family. Im not familiar to this site but any info that you mentioned about second surgerys i would like to know, if there are facts or other members that have had this experience i would like to send them a message(how to find). I believe that if my father had half of his liver removed, and now there is a small cc on the top of the liver why cant they cut it out. This is my quest i would even take him to the united states if it would be done. Of course this is my theory, now i need the facts to determine if im right or wrong. Thanks Lainy for your support

Re: New member, father was diagnosed with klatskins tumor

Marco don't know if this will work but....we have a Search engine at the top and type in something like second liver surgery or more liver surgery and if we have anything on more liver surgeries those posts will pop up. Worth a try.

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: New member, father was diagnosed with klatskins tumor

Marco, I did find that PCL1029 wrote a great post on Nov 18

And Barb also wrote one I think it was this week. I hope you are reading the posts becaue you have had some really good answers.

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: New member, father was diagnosed with klatskins tumor

Hi Lainy hope all is well. You mentioned that teddy had the cc in the liver at the end, just wondering where he had the original cc. My father had bile duct c which they called it klatskins. Is there a difference of these c . thanks marco

Re: New member, father was diagnosed with klatskins tumor

Hi there Marco. I don't know all the medical terms but I know his was where the ducts meet the head of the Pancreas. Also his duodenum was removed and that is exactly where it kept returning in the Ampulla of Vater area. It never Metas. Until the very end, his stomach became so swollen but mostly on the right side. We just knew it had spread at the end.

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.

17 (edited by marions Thu, 28 Nov 2013 12:13:27)

Re: New member, father was diagnosed with klatskins tumor

Marco..... Your father has extrahepatic disease whereas Teddy had Distal Cholangiocarcinoma.   
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member, father was diagnosed with klatskins tumor

Hi Lainy thanks im learning so much, also reading other member's  experiences and hating that so many have to deal with this monster. thanks have a great weekend

Re: New member, father was diagnosed with klatskins tumor

Macro -
My husband had the same surgery your dad did for his Klatskin's tumor back in June. There was an issue that came up in July regarding a possible infection in the area where the bile ducts and the duodenum come together. The original surgeon consulted on this since we were arguing against having stents placed. Our surgeon said he could do no more surgery in that are (meaning the area of that original surgery) but he did not say no more surgery ever, just no it that spot. We are currently 8 out of 12 doses of Gem/OX down and doing fairly well. My husband had clean margins and one positive node. I would think that age should have nothing to do with doing a surgery or not (I do understand your health system though), it to me is more of a quality of life issue so be your father's advocate. I have always said that the squeaky wheel gets greased.

Marco you would welcome to email me directly if you wish. dazoo3563@comcast.net

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.