Topic: Dad just got diagnosed with cholangiocarcinoma

Hello  all... I am new to discussion groups so please bear with me.

My name is Hazel, 28 yrs. old and my dad just got diagnosed with cholangiocarcinoma. He will be 56 this coming Saturday. We heard the saddest news on Friday, 17th. His doctor told us that his cancer has spread to his lungs, liver and gallbladder. She said that at this point, treatment is not an option and she furthere suggests that we consider hospice care. According to her, my dad only has months to live, if that.

I was too devastated with the news. I couldn't think straight. I did not even asked questions.

IS there anybody out there in a similar situation as us? Do any of you have suggestions? Would you strongly suggest we see another doctor? (If yes, who in the Southern California and Arizona area?)

Re: Dad just got diagnosed with cholangiocarcinoma

Dear Hazel,
I am so so sorry to hear the bad news you got about your father. My mother was in a similar situation, and we kept hoping for a miracle that never came. I hope your father is that miracle we missed.

It's always a good idea to get a second opinion - unless he's so weak and fatigued that it takes away from his quality of life to drag him to doctors. I'm sorry I'm on the east coast so I don't know of anyone in that area, but I'm sure others on this board can steer you in the right direction.

The only words of advice I have for you: Never give up hope, show your dad how much you love him every moment that you can, and even though you have hope, be prepared for the worst and help him through it.

There are people on this board who have had great success with natural herbal remedies and natural diets - look under the heading of alternative therapies.  Chemo is also an option, though it's not very helpful for most cc patients -- but that's a decision that's up to your father, his doctor, you and the rest of your family.

My heart breaks for you -- I know how you must feel, and your dad is so young.  I don't know what to say except that you always have friends on this board who will try to answer your questions or just be there for you if you need to vent.

I wish you peace and hope,
Joyce

Re: Dad just got diagnosed with cholangiocarcinoma

Many people on here are using alternative therapies and suppliments which do seem to help somewhat.
You may also want to get a second opinion but I have no suggestions as to whom as I live in Sweden. But I am not even sure that it needs to be someone definately in your area. My best friend is a pediatric oncologist at Fred Hutchinson Cancer center in Seattle. I am very unhappy with my oncologist here in Sweden, and she is going to send my scans and copies of my paperwork to a specialist she knows. So I do know that in some cases, doctors will look at the lab reports, scans, and notes and offer somesort of second opinion.

I am terribly sorry that your family is being touched by this disease. It is devastating for the entire family.

I understand being upset and not asking the right questions. When I was diagnosed and in the hospital, each round of bad news had to be given to me in intervals. I just shut down and the doctors picked up on it. So instead of having one 15 minute conversation with me I had like 5 five minute ones throughout the day. If it was really bad news, the doctor would wait until a friend or family member was there so they could take notes on the conversation and ask questions because I just shut down. Sorry for the ramble, but you sounded disappointed and frustrated with yourself over not respoinding well to the news and I just wanted you to know that it is ok and common not to take it all in at first. This is a great place for information and support. There are so many here with all types of knowledge and experience and hopefully they can offer you more advice than I.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Dad just got diagnosed with cholangiocarcinoma

Thanks for all your inspiring words. I really means a lot to me.
I took the news the hardest since I am very close to my dad. It is very hard seeing him deteriorate from a happy, very outgoing person to somebody who is stuck in a wheelchair - very weak. We didn't see it coming. So when we finally found out, it hit us hard.

I will definitely look into alternative medicine. Thanks a bunch for the suggestion!

JOYCE: Thanks for your message. It really touched my heart.

KRIS: My heart goes out to you. Hang in there. You are right, cancer is just a word.

Hope all is well with everyone

Hazel

Re: Dad just got diagnosed with cholangiocarcinoma

My husband Joe was diagnosed with Stage 4 last July 2006.  he chose not to do conventional chemo becasue he didn't want to be sick the rest of his life.  We did go to Mesa AZ in March to get alternative treatment called IPT  Insulin Potentiation Therapy from Dr. Thomas Lodi.  We were there for three months with a two week break in the middle.  It is not covered by Medicare but it is covered partially by some insurances.  His results were good.  He had liver and lung involvement and his tumors have all shrunk and he has no symptoms now.  We are continuing this treatment here in Il  but not as often.  There is a website you can check on for Dr. Lodi and for IPT.  It worked for us and quality of life is definitely better.  We also had lots of prayers along the way and feel that this helped us got through the last year as well as any treatment.  God Bless you and give you wisdom in your decisions.  Mary Anne

Re: Dad just got diagnosed with cholangiocarcinoma

THanks for the info, Mary Anne. This will save me time in researching doctors. My dad was in Southern California until today. He's here now in AZ.
It's good to hear that your husband is doing good. I have been hearing negative news lately.

Re: Dad just got diagnosed with cholangiocarcinoma

Dear Hazel

I too am so sorry to hear about your news, I too am in my 50's and had been pretty healthy until a few weeks ago, it gets you right in the solar plexus.  I have a 10 year old son who is facing losing his mom, it's heartbreaking.  I don't know if this will help or not, but here is what I have decided:  My first priority is my son, so I am taking care of business, financial, paperwork, all that stuff.  I had made that decision even before I knew for sure I had CC, I figured that the scare was the kick in the pants I needed to be a responsible parent.  I did get a second, and a third opinion, not because I didn't believe the original diagnosis, but at the behest of my oncologist.  I have not given myself a death sentence, but I have made this decision:  I will NOT go chasing after rainbows if it means that my quality of life will suffer.  I don't want my son to remember his mom as some puking hairless invalid who was gone half the time looking for the next study because MAYBE, just MAYBE, this will be the one.  I am at peace with that.  I tell my friends to continue to pray for miracles, my physicians will continue to look for studies that may give me some more time.  I have many moments where I scream and cry, but I am mostly at peace.  As long as I know my son will be taken care of and loved, I can concentrate on my physical well being.  And if my time here is shorter than I wanted, then my duty is to teach my son to make the most of it.

Re: Dad just got diagnosed with cholangiocarcinoma

Hello Hazel,

I am very sorry to hear about your father. My situation is similar although I don't know the stage yet. My dad is 65.  I am going to do much research in the next few days and whatever I find out I will post right here for you to read as well. I am praying for you.

Re: Dad just got diagnosed with cholangiocarcinoma

thecdr: YOu are a brave woman. I can't help but admire your strength. We have decided to the the same for my dad  - spend as much quality time with him as much as possible. The first few weeks had been rough but we have come into terms with the fact that his death is very imminent. He is deteriorating fast. All we can do at this point is take turns caring for him and tell him how much we love him every chance we get.
I wish you and your son a lot of happy moments together. You and your son will be in my prayers.