Topic: Father "Diagnosed"- Don't know where to start

Hello everybody! My name is Danielle and I am a 19 year old optimist. Around Thanksgiving, my family had all come down with a stomach virus, which my father had seemed to catch. We realized he was losing weight very quickly and became very fatigued and tired. However, even after Christmas, the "virus" had not seemed to go away. My father, only 44 years old, is very frightened by the whole doctor/hospital atmosphere so he would not get checked out, claimed he just needed some time to rest to get rid of the virus.

The day before New Year's Eve, he had collapsed 3 times. Although we begged and pleaded for him to go to the hospital, he refused. He said he "had a feeling in his head of what this could be" and that "he had not made his peace with God yet." Finally, he agreed to go on New Year's Eve (We took him to Stony Brook University Hospital, on Long Island, thinking they would have the best technology- it is a teaching hospital). Besides being EXTREMELY dehydrated, test had shown that he had a mass on his liver. The Attending ER doctor immediately said it was liver cancer, but the oncologist said we needed to do a liver tissue biopsy. After the biopsy, he was told it was lymphoma. Then, after another look, we were told it wasn't lymphoma but it definitely IS cancer. Within a course of a week and a half, they changed the type of cancer 6 times. Finally, they said they were "calling" it stage IV bile duct cancer, with a large tumor that was pushing on the stomach making it almost impossible for him to eat. One gastro oncologist doctor came in and said "for your type of cancer, chemo does not work, it only prolongs life. If he lives 5 more years it will be pushing it" while an oncologist said "as long as you are willing to fight, I have a good feeling I can help you."

My problem is after all of the run around we have gotten, I don't know how much I can trust these doctors. I was wondering why they were "calling" it this and not diagnosing him. How do I know if the treatment they are suggesting is really the best way to go? My father's spirits are pretty low because of the uncertainty that these doctors are showing. As you may be able to tell, I am just so overwhelmed and confused because everyone seems to contradict each other at the hospital.

When I found you guys, I felt a great deal of relief. I know I want to transfer my father to a cancer center but I was wondering if anyone could give me some advice as to where to look. If anyone could recommend an oncologist, cancer treatment center, treatments/remedies that seem to be helping you or your loved one, any type of advice, I would greatly appreciate it. We are willing to try ANYTHING.

Thank you for taking the time to read my story. Please feel free to ask me more about his situation if it will help you at any way, I am open to sharing anything that could potentially help not only my father but other people who have to deal with this scenario. I wish nothing but a complete recovery to everyone!

Re: Father "Diagnosed"- Don't know where to start

Hi Danielle (I have a Granddaughter Danielle) I am so sorry for what your family is going through. First of all you want to be at a major hospital where they treat more than just a few cases of CC. I believe in your area and hopefully not too far 2 of the best would be NY Presbyterian and Sloan Kettering also in NYC. I believe at MSK it would be Dr. Fong but I have to ask the rest of the family here who the ONC would be at NY Presbyterian. We have members on here who have had the CC removed followed by Chemo and they are doing quite well. It is late right now but I am sure you will be getting more responses here, know that you are not alone and you have come to the right place. You will want to get copies of all Tests, LABS and Scans that your Father has had and have them put on a Disc for whom ever you end up seeing. The hospital will do this for you from their records. If a Doctor made the remark to me that was made to your father about pushing it to 5 years I would run the other way!  He wants to give up before he begins and we were not born with expiration dates stamped on our feet. Stay strong and you can start getting things together for you next Oncologist!

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: Father "Diagnosed"- Don't know where to start

Hi Danielle. My name is Shelley. When I read your post, I just had to write to you. I am so impressed by your maturity at 19. Your father has had a rough couple of months. But what an incredible ambassador he has in you! Don't let anything the doctor says bring you down. Use it to keep fighting for him. My husband has CC too. He's a little older than your dad. The doctor's had a tough time diagnosing him too. It's a hard one to figure out. I can't help you with advice as to where he should treat because I am on the other coast. But, I want you to stay strong for your dad. As you'll see on this site, there are many people who do very well.

4 (edited by PCL1029 Wed, 15 Jan 2014 23:13:02)

Re: Father "Diagnosed"- Don't know where to start

Hi, Danille,

http://www.cholangiocarcinoma.org/punbb … 006#p81006

http://www.cholangiocarcinoma.org/punbb … 813#p82813

http://www.ncbi.nlm.nih.gov/pmc/article … n_sectitle

http://www.cholangiocarcinoma.org/punbb … 023#p84023

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: Father "Diagnosed"- Don't know where to start

Hi Danielle -
It is so scary I agree with you. You dad is only just a little older than me and I have a 20 year old son (who just battled thyroid cancer and won) and a 22 year old daughter. I know how scared they were when my husband was diagnosed.
I am with everyone here.....second, third, fourth opinion if you need it. And make sure you ask how many cc patients they have treated. There is no need to give up hope. Here's a link that has some survivor milestones and there are some that have many, many years living with or beating this disease. It gave me hope to see how long some have lived.

http://www.cholangiocarcinoma.org/punbb … hp?id=8883

Hang in there and remember we are always here. If you have a question some here will have a suggestion or an answer or a place to start looking.

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.

Re: Father "Diagnosed"- Don't know where to start

Hi Danielle...Welcome to the site...I joined here in 2009 after I was diagnosed at 51 I received an e mail from my initial introduction post from a beautiful young man whose mother had been diagnosed with the same cancer as mine...he gave me the name of a surgeon and Mt Sinai who deemed me operative when another well revered cancer center said no hope for surgery and yet here I'm 4 years later...just had a clean pet scan. I receive chemo from Dr. Howard Bruckner and Dr. Azriel Hirschfeld truly incredible oncologists...the number for their office is 718-732-4050..they are in the Bronx by the botanical gardens...they also have much experience with CC and pancreatic cancer...Have you had a 2nd opinion with a surgeon? Sometimes it can make all the difference...Best of luck to you and your Dad he is blessed to have you as a daughter and believe me we all need the support that our loved ones give. If you have any questions please don't hesitate to
e-mail me I believe my e-mail is under my profile.
Nancy

Re: Father "Diagnosed"- Don't know where to start

Dear Danielle,

So sorry for all you've been through.  We live on Long Island as well, and my daughter (age 29) received a second opinion, and ultimately surgery and chemo at Memorial Sloan Kettering.  I have heard wonderful things about the entire surgical team in pancrobiliary at Sloan.  Her surgeon was Dr. Peter Kingham  and her oncologist is Dr. Eileen O'Reilly. There are not enough words to praise these people and our experience at Sloan in general.

Good luck to your father and your entire family,

January