Four Brother had cholangiocarcinoma- a reposted message need answers

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  • #51686
    pcl1029
    Member

    Hi,Kat11,
    Not did i do not care about your dad’s condition;But as a patient myself,I know there are a lot of things going on in a patient’s mind that other people except him or herself may not be totally understand; things like how and where to get the best treatment so that I can live as long as possible to take care of me and my family ; or if this works as advertised,that it should work for me too. Deep down ,the REASON is simple,as patients,we are all afraid of the time will come before we we want to.We may appear to be very tough or logical in front of other people,but inside each of us,at least for myself,even I think I know what to do,even I think I have an upper hand on the knowledge of CC; and even I have great medical resources for continuing care and treatments of this illness. The UNCERTAINTY of the future with this CC illness in my mind is a very heavy burden. And I think your father will have the same thoughts and feelings too. Therefore if you have tried your best to help your father ,then no matter what will happen in the future, you look back and your can say to yourself, I did my best and had no regret.
    BTW, base on your family history,I strongly suggest you should take an ultrasound of the abdomen and liver,or better to have a CAT scan with contrast of the chest ,abdomen and pelvis done before you are 45 years old and repeat it every few years for early detection and treatment of the same that your father and uncles had.
    I believe choledochal cysts might be the genetic risk factor for your family’s prevalence of CC history based on the articles I read about CC.
    Again, I am not a doctor,I am just a patient. good luck and
    God bless.

    #51685
    lainy
    Spectator

    Dear Kat, I was re reading your posts and I am going to butt in here and say that I think there are tooooo many people trying to tell your dad and you what to do. I think to chemo or not to chemo is a very personal decision and it boils down to this: Ask the doctors what is going to happen if he does Chemo. What kind of prognosis will that give him and what will the prognosis be if he doesn’t have chemo. I hate to see the whole family at odds with each other because that is putting much added stress on your Dad and he needs to save his energy to fight the CC. Sometimes the patients has feelings about where they are at with their CC and he may feel things he is not telling you. Noone is equipped to tell you what he should do and only the ONC can help. I would even tell all the family that if they cannot present a united and calm front for Dad that he will not be able to have any visitors until things calm down.

    #51684
    kat11
    Member

    I don’t know if it is too much to ask, but I am still struggling to get my father to keep doing chemo… He wants to go on this crazy diet he heard of and is listening to people on tv and around him saying how horrible chemo is. (still hasn’t had ANY side effects that I know of though) Would any of you be so kind as to direct a message to my dad? I mean, what would you tell him? I would like to make a compilation of information and maybe even messages so that he can read and maybe get motivated. He won’t reach out to anyone on his own ever, I noticed that, so I want to make him understand he doesn’t have to be like that, he could be more positive! Because I honestly don’t know how else to cominicate this to him, every time i go to that topic we argue.

    #51683
    lainy
    Spectator

    Kat, when Teddy came home from his Whipple he started walking, very slowly. First down the driveway and back. Week by week he increased it. Soon he was putting golf balls. He said even the walk down the short driveway felt so good.
    Tell AUntie in a nice way that life is for the living and dad’s attitude is so important in healing!

    #51682
    kat11
    Member

    Wow, that is active indeed! I wanted to know because my aunt doesnt let my dad move and tells him that’s how it has to be from now on! And frankly he can’t stand it. When the time is right I’m going to encourage him to start doing things around the house and he wants to start working, but not with heavy things and starting small. I really think this could be what changes his opinion about treatment. Being active is very important to him. He used to go walking or riding his bike every morning before doing anything else. Also, after this round of chemo, he’ll get some analysis done and if he’s doing better I will ask for a reevaluation to see if he can now be a candidate for surgery. Your post made me happy and gave hope. Thank you!

    #51681
    kat11
    Member

    If you don’t mind me asking, where are you? And how old are you? Have you been active this whole time? do you work?

    I want to give my dad an example of someone to get his outlook to be more positive and to stick to the chemo.

    #51680
    pcl1029
    Member

    Hi,Kat11,
    thanks for your info. I will look into it and do some research.
    BTW, I have the CC for 2 years.

    The toughest thing about cc is that the patient looks normal and fine even in the late stage of the game.He/she may feel just a bit tire but still can do all the stuff until last moment.That is why CC is a very DECEPTIVE illness even to the very knowledgeable and healthy person.So tell your father when the time is right about this.He need to see a liver specialist or at least a GI doctor who have treat CC before.Tell your dad current chemo treatment is much better than in the past and there are better medications to treat the side effects of the chemo treatment.
    For you and your siblings,I will suggest when you reach the age of 45-50, try to get a CAT SCAN to rule out choledochal cyst because you did mention one of the brother having benign cysts;find out where was the cysts and it may help too.Again, please remember,I am not a doctor,I just want to share the info. I know with you.
    God bless.

    #51679
    kat11
    Member

    Also, how long have you had this cancer (do you still have it)? He had a cardiologist consult. Since he is being treated at a veterans’ hospital where they have a specialist for a lot of fields, he has even seen a nutritionist.

    #51678
    kat11
    Member

    Please keep us informed a bit more about the 3 brothers of your dad,
    what age they died?
    Tito 53, Anthony 71, jim 54, my dad is 65. The ones that are alive and are watching some benign cysts are around an aunt who is 72 and my uncle is like 67. (Don’t know the exact ages though, except my dad’s ).

    How long each of them had to suffer-a few month or year?
    Well 2 of my uncles suffered for about 4 months after the diagnosis, it was too late. The other one, had surgeries and treatments but lasted about a year. My dad was diagnosed last month and is the earliest it’s been caught in the family.

    Where did they get the same diagnosis of bile duct cancer,In then States?
    We live in Puerto Rico, and they have had different doctors, for my dad we had all of his brothers history which helped the diagnosis.

    Are they all have the SAME diagnosis of extrahepatic(ductal) bile duct cancer?
    One of them had in the bile duct I remember because it was the most recent and he had a stent put in with no good results, the one before him afected the liver mostly but I don’t remember where it started (i was young) and the other one I was too little to be even aware of the situation at the time, but from the history i was told it was the same type of cancer.

    Were they chronic hepatitis B carriers?
    One of my uncles had hep B.

    Were they all working in the auto,rubber(tires),chemical(plastics,asbestos) or wood-finishing industries for a while?(How long if so?)
    No, Well, my dad makes doors and windows, and one of my uncles hat died was a handy man for most of the time, the oldest one worked in a pathology lab and the other one was a sales rep and distributor for a tobacco company.

    Were they like drinking a bit and smoking when all the 4 brothers were together having fun?
    They all drank, some socially others more.

    Did they like to have barbeque or cooking with charcoal or wood outside when they together with the family?
    We rarely had barbecues, when we had parties we mde lots of food from the kitchen.

    Did they love to eat cured meat,salt preservative products ?
    About eating habits I know my dad ate a lot of the wrong foods, don’t know about my uncles though.

    Did they like seafood and esp.shellfish like crab,shrimps ,oyster etc?
    My dad likes crabs and all that but doesn’t eat it THAT much.

    Were all 4 brothers like to swim in the 1950s-1970 ?and where were they swimming?
    I’m pretty sure they swam for fun but, on a regular basis, I’m not sure, i could ask though.

    Did any one of the brothers had TB and require treatment of of Isoniazid?
    No.

    Were they in the army in Vietnam and exposed to Dioxin?
    My dad went to Vietnam, I think 2 of my dead uncles were around korea at some point.

    Ask your father whether he knows any family medical history like cirrhosis,and liver fibrosis,gallstones and bile duct stones and/or cholangitis?
    This I have to ask one of my aunts (they are nurses and know the brothers history way better) but I think the one that hep B had liver issues, my dad drank a lot and had health problems, at first doctors thought in 2 of my uncles’ and my dad’s cases that they had stones at first then realizing it’s cancer. not sure if they had any before that.

    Ask your father all the above and that may help in preventing you and your siblings to have the same fate as your dad and uncles.

    The above are important risk factors to understand this cancer.
    YOUR ANSWERS will help us to understand why 4 brothers have this rare form of cancer. and in return I may find out some answers to PREVENT you and your family to have the same fate.
    God bless.
    I quoted and answer below each question what I could from the top of my head. Thank you for the concern, I will ask my aunts, me and my dad right now are not on speaking terms, we are fighting over his chemo (he doesn’t want to get it even though he started and hasn’t gotten sicker and has gained weight, I’m very frustrated and trying to gather the words to let him know it’s a good choice. He says he doesn’t want to kill good cells in his body that he has left…. I think he’s scared and ignorant on how much more complicate it is than just losing some cells. He’s old and stubborn but I’ll ask as soon as I can and get back to you ok? God bless you too :)

    #51677
    kat11
    Member

    I’m sorry! My computer is getting fixed. I am reading the questions so i can answer asap! Thanks

    #51676
    pcl1029
    Member

    Hi,
    Since kat11 has no response to the above risk factor questions .
    Base on two reports that I read;most likely the answers are congenital abnormality (birth defects)such as Choledochal cysts,Caroli’s disease and congenital hepatic fibrosis(only 12-25% of anomalies have a purely generic cause.)
    God bless.

    #5444
    pcl1029
    Member

    Hi,KAT11,
    Please allow me to repost your situation and please reply all the answers you can,it may help you and your family to have the same problem and others as well.

    Please keep us informed a bit more about the 3 brothers of your dad,
    what age they died?
    How long each of them had to suffer-a few month or year?
    Where did they get the same diagnosis of bile duct cancer,In then States?
    Are they all have the SAME diagnosis of extrahepatic(ductal) bile duct cancer?
    Were they chronic hepatitis B carriers?
    Were they all working in the auto,rubber(tires),chemical(plastics,asbestos) or wood-finishing industries for a while?(How long if so?)
    Were they like drinking a bit and smoking when all the 4 brothers were together having fun?
    Did they like to have barbeque or cooking with charcoal or wood outside when they together with the family?
    Did they love to eat cured meat,salt preservative products ?
    Did they like seafood and esp.shellfish like crab,shrimps ,oyster etc?
    Were all 4 brothers like to swim in the 1950s-1970 ?and where were they swimming?
    Did any one of the brothers had TB and require treatment of of Isoniazid?
    Were they in the army in Vietnam and exposed to Dioxin?
    Ask your father whether he knows any family medical history like cirrhosis,and liver fibrosis,gallstones and bile duct stones and/or cholangitis?
    Ask your father all the above and that may help in preventing you and your siblings to have the same fate as your dad and uncles.
    The above are important risk factors to understand this cancer.
    YOUR ANSWERS will help us to understand why 4 brothers have this rare form of cancer. and in return I may find out some answers to PREVENT you and your family to have the same fate.
    God bless.

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