Topic: Just diagnosed and afraid for my Dad.

My Dad was just diagnosed with this type of cancer.  It is so unfamiliar to me, I don't even know what questions to ask. 
They told him it was in both of his lobes or nodes of his liver and believe he is stage 3.  Some say he should have radiation and chemo and other doctors say chemo won't help. 
I have researched this alot on the internet but the internet tells me that most peolpe won't survive 1/2 year with this type of cancer.    He was hospitalized with jaundice and they put a stent in him four months ago so I feel like the clock is ticking.  I am so afraid when I say goodbye to him that I may not see him again.  I don't know how to be specific about what I am asking of anyone who reads this but I would be grateful for any information I can get.

2 (edited by Missing U Fri, 06 Apr 2007 22:38:09)

Re: Just diagnosed and afraid for my Dad.

Hi- I would suggest looking up information on cholangiocarcinoma in MD Anderson's Website as well as in the Mayo Clinic's site.  Both are excellent Cancer treatement centres and have clinical trials.  There is a protocol that MD Anderson uses for this type of CA that they also use for Ovarian Cancer.  Don't know what it's called, but it is usually reserved as a last effort. 

I lost my Dad to this illness, but that doesn't mean everyone will succomb to it.  My advice to you at this stage is to be there for him in every moment of need that you are able to. If he needs to speak to you about his fear, let him and give him hope.  Tell him that you are there for him through this in whatever way he needs you to be; this is the best you can do at this point.  Love has so much power to heal that we are not even aware.  Love him, that is what he needs.

Blessings to you and your father.

Re: Just diagnosed and afraid for my Dad.

I am sorry to hear about your Dad.  You were with him through it all and I am sure he was grateful to have you by his side.  He knew how much you loved him.  I hope you can find some comfort in that. 

I am taking your advice to try to just be there for my Dad as well.  Unfortunately, he said he feels like his health is all we talk about anymore and he says he is boring everyone.  He has also made the decsion to forgo all treatment.  I think it is because he feels like he is a burden or maybe he is just scared, I don't know.  He won't talk about it to me anymore.  He doesn't want me to even take him to the doctor anymore. 

I actually liked the idea of taking him to doctor daily because selfishly I could spend more time with him without looking like I was hovering over him.  I don't know if he needs to mentally sort things out so I am trying to just give him the same respect I gave him when he was healthy by respecting his decision but I know I will lose him sooner without treatment.  It makes me panicked and helpless.  I pray he will change his mind.

I know it wouldn't be fair for God to let me keep my Dad forever when the rest of the world has to lose thiers but it doesn't stop me from asking Him for more time.   Especially after reading your Easter post, I know that I need to just be grateful that I have him now.   It's just so hard to feel grateful when the feeling of fear and sadness is so much stronger. I am so happy to be able to spend this Easter with him and yet I am so sad because all I can think about iis that this is probably the last Easter I will spend with him.   Then I geel guilty for being so ungrateful for the time I do have.  I guess I have some things to sort out myself. 

Thanks for your advice.

Re: Just diagnosed and afraid for my Dad.

Fathers Daughter wrote:

I am sorry to hear about your Dad.  You were with him through it all and I am sure he was grateful to have you by his side.  He knew how much you loved him.  I hope you can find some comfort in that. 

I am taking your advice to try to just be there for my Dad as well.  Unfortunately, he said he feels like his health is all we talk about anymore and he says he is boring everyone.  He has also made the decsion to forgo all treatment.  I think it is because he feels like he is a burden or maybe he is just scared, I don't know.  He won't talk about it to me anymore.  He doesn't want me to even take him to the doctor anymore. 

I actually liked the idea of taking him to doctor daily because selfishly I could spend more time with him without looking like I was hovering over him.  I don't know if he needs to mentally sort things out so I am trying to just give him the same respect I gave him when he was healthy by respecting his decision but I know I will lose him sooner without treatment.  It makes me panicked and helpless.  I pray he will change his mind.

I know it wouldn't be fair for God to let me keep my Dad forever when the rest of the world has to lose thiers but it doesn't stop me from asking Him for more time.   Especially after reading your Easter post, I know that I need to just be grateful that I have him now.   It's just so hard to feel grateful when the feeling of fear and sadness is so much stronger. I am so happy to be able to spend this Easter with him and yet I am so sad because all I can think about iis that this is probably the last Easter I will spend with him.   Then I geel guilty for being so ungrateful for the time I do have.  I guess I have some things to sort out myself. 

Thanks for your advice.

My Uncle has too only just been diagnosed. I'm so afraid for him as he is sooo young and has 3 infant children. He has Jaundice and they are going to unblock the Bile Duct. we are trying to get him referred to Leeds for a second opinion as they are sayinf my uncle  his GP has been of no help what so ever - we really felt the postcode lottery effect this morning when he said he couldn't refer him outside of this area. we are willing to go private to get this initial consultation but it just feels as if the system is against us. i pray to God that he shows us which direction to go in. I would appreciate any advice about where we can get treatment for his cancer as we are willing to raise funds to try as extend his life - I as his neice & friend just want my young cousins to be able to be old enough to remember him before he goes. God bless & I hope you are able to get the help needed for your dad.

If anyone else comes across this pos any advice you have will be very much appreciated. I will also look up the Mayo Clinic and MD Andersons Website - if there are otehr specialist centres that deal with this condition please let us know. Also, if you know about the whole world of referrals or processes please get in touch. Thanks!

Re: Just diagnosed and afraid for my Dad.

Father's Duaghter,  I'm a Dad with the same disease with a Duaghter 28 years old and a Son of 26.   I can't forget my two grandchildren Brookie and PJ; age 2 and 5.  I don't really know what advice to offer you.  I can say all the thoughts you have expressed in your post are feelings My children and I have lived with and continue to do so.  I have CC on my entire liver, both of my lungs, and now a good possibility it has moved to my ribs and hip bones.  I was first diagnosised March, 1999 and still continue one day at a time.  I have had a couple operations, procedures, radiation, and currently on my 4th different regimen of chemotheraphy.  You know I've been through the complete cycle of hope, anger, mad at the world, tears, no hope, and  being scared.  Not scared of dying but scared to leave all my loved ones as I feel I can still help and want to help them just a little more.  I wasn't prepared and I guess still not as far as leaving my loved ones.  I have made peace with myself and with God now and know it is God's will for me to leave this earth maybe sooner or maybe later.  So far I have been given 8 years; Iv'e been able to relocate so my family is all together, I've been able to see both births of my grandchildren, I have just made another wedding aniversary (31 Years)....I at what time didn't think I was going to see our 25th.  You appear to have done some homework about this manipulating and cruel disease and know that it effects everyone differently as far as progression and treatments as well.  I remembered when I told my family I did not want to go through this anymore and I also told them I was just a burden to them all.  But it turns out I have been able to assist and help them all as well as them helping me through some tough times. You know I realized after a while this is "love" so surreal !  As far as respect goes ; I still expect respect from my children in the Dad way but I also respect there thoughts and suggestion as well or my Daddy tutoring would be all for not.  In saying that, wisdom comes from experience and age.  When it comes to end of life issues Daddy's are on an even playing field and some times have difficulty dealing with their loved ones as they can't rely on their wisdom; that gets a little scary.  I can honestly say I haven't worked through everything  myself and don't know if I ever will completely.  My duaghter still cries and doesn't understand she can't just give me a lung or part of her liver.  It just don't work that way.  My wife expresses trying something new and different but I refuse to put my family in a position where they would not have a roof over their heads.  Again if I can't do something or at least this one last thing, then my life may have ended sooner, who knows?  My life Insurance may not be much but I can leave this world comfortably knowing it wasn't sucked up by medical and hospital bills as I will pay ahead or as I go.  One thing I can say is that love will conquer the power of fear and sadness.  And You surely should not feel guilty about spending time with your Dad.  I have issuses with the hovering over me.  But we all came to an agreement that I want them to press on with their daily lives and if I need my space or when I need a little help I promised to let them know as I don't want this CC keeping the family hostage.  I could go tomorrow from a clot to the lungs or 3 months from now due to kidney failure, or maybe not until my 32nd Wedding Anniversary if this chemo keeps things moving slow.  Just let your Dad make his choices, as time progresses (the Issue Time) Dad may say oh I'll give it a whirl or maybe not.  Although it will be extremely hard you don't have to accept the no go, but respect and dignity comes in to play during these trying times.  Some call it stubbornest but others understand and  know Dads live the reality of life til the end.  There is hope all over the world!!!  Some of us fair better than others, We are all individuals with different results.  Praying to God for guidance and talking with Family and friends and even professionals will help.  But it is hard so hard no matter what.  Giving hugs and letting someone know how much you love them is hard for some hardliner Dads, usually because they were never showed how.
God Bless Your Dad and your Family and You!!!

Jeff G. 
  P.S.  There are new treatments being worked on everyday. Hope is in the Air!

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

Re: Just diagnosed and afraid for my Dad.

Dear Jeff G.

Your words help me so much in understanding my Dad.  He has touched about every single thing you mentioned.  The idea of this disease holding the family hostage and sucking up all the money for medical expenses and pressing on with our daily lives.  When he said those things, I interpreted them as he was giving up and wasn't willing to fight to live.  It frustrated me because I wanted to tell him that if he didn't want to fight for himself then to please try to fight for me because I am not ready to lose him yet. 

But I think I understand,  since I have found out that he has this disease,  it has consumed everything.  It is all I think about, study on the internet, talk about and worry about.  This disease has in a way held us hostage.  I haven't talked to my Dad about anything BUT this disease.  In fact one day last week, I called him three times in an hour because of new facts I found out about on the internet.  He told me that his head was swimming and he didn't want to think about it anymore that day.  It hurt my feelings because I wanted him to know everything there was to know.  Like if we knew more about the disease than maybe we could somehow cure it.  I even studied his MRI CT scans looking for, I don't know what.


This is a horrible disease but I am not going to let it hold us hostage.  I have decided to leave the medical stuff to the doctors and just enjoy having him here with me today.  Like you said, I don't know if he will be here tomorrow or in another three months but I have him today and I am grateful.  If he changes his mind and gives treatment a whirl, I will gladly take him but until then I am going to stop hovering. 

Thanks again for helping me unnderstand this better.  Your kids are blessed to have you help them as their Dad and I am grateful that you gave me some Dad advice too.  I so hope that you celebrate your 32 Wedding Anniversary and the 40th too for that matter. 

Blessings to you and your family.

Re: Just diagnosed and afraid for my Dad.

Hi Father

Re: Just diagnosed and afraid for my Dad.

Dear Father's Daughter,

I can totally understand your feelings and what you are going through this very moment.  Like Missing U said it is very important that you give your father the best support and also to fully support his decisions.

My dad is also going though a very difficult time right now, he has multiple tumors on both lobes of his liver, and his first regimen of chemo has failed.  Now switching to Gemzar and we are in a very "gray" area right now.  I have read about survival periods and nightmares keep popping in my head.  One thing I have learned is that you need to be very strong in front of your dad, and also keep the family together and help him fight this disease.  When I am in front of my dad, I dare not shed any tears but inside my heart is like bleeding when I see him going for treatments etc. 

Please keep in there and stay strong.  God bless us all and take care.

Re: Just diagnosed and afraid for my Dad.

My father was diagnosed last October.  He is 77 years old and until this had been the picture of health.  He had biliary bypass surgery, followed by many complications, but started radiation therapy in January.  He only had 11 sessions and had to stop because of infection.  He is not a candidate for chemo because of his very poor condition.

He is down to about 130 pounds (from 180), and his pain varies in intensity from day to day.  He takes oxycontin for the pain.  His most recent doctor visit revealed that his bilirubin and liver function haven't changed too much, but the tumor marker is elevated.

He remains determined to fight.  It is so hard for us, his family, to see him go through this.  He is extremely weak and understandibly depressed.


We spend as much time as possible with him and our mother and try to make this a happy time.   Our emotions are so mixed - we don't ever want to lose him, but we are devastated to see him is this condition.   We feel very hopeless.

Blessings to everyone.

Re: Just diagnosed and afraid for my Dad.

Hi CathyF,  I am sorry to hear about your Dad's condition.  This disease is quite  brutal to put it mildly.  What type of radiation therapy did he go through and for what if you don't mind me asking?  Has his scans shown Mets to other locations?  I know when I had Radiation treatments I had sorta a residual/delayed symtoms of lazy/tired feeling and of course depression.  It is so so hard to keep positive but I break it down in to like one week or sometimes one day at a time and focus on activity to get by most of the time.  Of course I'm quite younger than your Dad and still functioning at par.  I guess what I'm trying to say, is if he is still determined then by golly he needs to use that power of his wisdom and battle on. Exercise , protein, and staying mentally active will take you a long way to feeling better and living with this disease.   God Bless you ,your Dad and family. 
Jeff G.

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