2nd Opinion
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Hi Lallo,
Great to hear from you again. I will be keeping my fingers crossed for your dad starting his chemo tomorrow and hope for the best possible outcome. Do you know what type of chemo he will be doing, Gem/Cis? And hopefully too his onc will be able to get the insurance company to cover the 2nd opinion.
You are doing the right thing here in learning as much as you can about all of this, as the better informed you all are the better the decisions your dad will be able to make when it comes to treatments etc. Knowledge is power and the more power you have the better! Also, I am very happy to hear you say that you are staring to focus on the now and not worrying about what may happen in the the future. None of us know for any certainty what may happen in the future and I believe that it is best to use your energy for what is happening now. Sounds like you and your dad are up for the fight, so stay strong! And please let us know how everything goes.
My best wishes to you and your dad,
Gavin
Hey guys,
Thank you all for your help and support. My dad starts chemo tomorrow and we did get in contact with USC Cancer. They recommended having the oncologist try and get the insurance company to cover the 2nd opinion. We will be talking to the doctor tomorrow about it and at the same time getting a copy of his entire file. Also, I am lucky to work for a diagnostic lab and after getting in contact with the pathologist, he offered to look at my dad’s case and give his opinion free of charge!! How bout that!! We are trying our best to become as knowledgeable as we can, while we can. I’m at the point where I am beginning to stop worrying about what MAY happen and start focusing on what we CAN do right now. Stay positive, and I hope you all have a great weekend. God Bless All Of You!!! I will update once I have more info. I am incredibly thankful that I found this site.Hi Lallo,
Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your dad. But you have done the right thing in coming here as you will get a ton of support and help from us all. Also, please feel free to ask any questions that you will have and we will all do what we can to help in answering them.
There’s not really much I can add to what has already been said to you by the others, but I just wanted to stop by here and welcome you. I can’t help you about your question regarding 2nd opinions and Insurance companies, hopefully someone else will. In the meantime, we do have an Insurance board that may be of help to you.
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=22
Please let us know how you get on with getting your dad that 2nd opinion.
My best wishes to you and your dad,
Gavin
Lallo,
Welcome to our family and please express our love and concern to your father. We are really in this together.
Lallo-Welcome and sorry you had to find us. I am a CC survivor. I had Stage IV and was inoperable. I am cancer free because of a liver transplant. Our cancer is very rare and needs to be treated by doctors with expierence in CC. My hero is Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO.
I would get a second opion and discuss transplant, resection or clinical trials. A second opinion only validates what you are doing or gives you another avenue of HOPE. Please read my story at thetelegraph.com under christmas miracle it will give your dad HOPE.
Lots of prayers-CathyI completely forgot to ask… Do insurance companies cover 2nd opinions? He has Health Net HMO. Does one usually need a referral or something? I’ll be calling both USC and the insurance company tomorrow but just wanted some insight as to what others have experienced.
Hello Lallo: Our Peter would say: Hello and welcome to the club no one wants to belong to. And, if I may add: and is glad to have found.
As it happens in so many other cases this cancer likes to rear its ugly head at a later stage of disease progression.
You might not have to wait too long to consult with Dr. El-Khouieri therefore, before adding another worry to your already upset life I would make the call to USC. Please, make sure to have copies of everything and anything pertaining to your DadHi Lallo, welcome to our wonderful family where we have the most couragous and caring people the world over. I am sorry to hear about your dad and we highly believe in 2nd opinions and even 3rd opinions. I don’t think there would be anything wrong with starting the chemo while waiting to see someone else. Lets see what some of our members say. We do not listen to stastics as we believe that we were not born with expiration dates. I would try to get your Dad into USC as soon as possible. By the way and no small item, but we have members who were Stage IV when diagnosed and they have already survived several years. Yes, your Dad is a Super Hero as only Super Hero’s can fight this Cancer. Please keep us update on his progress, we care.
Lallo:
We are firm believer’s of 2nd and even 3rd, 4th, etc. opinoins. My husband Tom who had a successful liver resection in March of 2008, developed jaundice in Nov. 09 and was told that he had 6 months at the most and that radiation and/or chemo would not help.
We did not listen to that and got 2nd, 3rd and 4th opinoins – they agreed that it was inoperable because the tumor was wrapped around the hepatic artery, but they all felt that radiation/chemo COULD help.
After 28 rounds of radiation, oral chemo (Xleoda) he has surpassed that 6 month time frame and in Nov it will be 2 years! One of him tumors just started growing again and he has just started on chemo, 5-FU which is similiar to Xleoda but an IV form. The doctor is hoping to once again slow down the progression of that 2nd tumor. Tom also has one small spot on his right lung that they are just watching for now…they do not know if it is cancer or not at this point.
So, welcome to the CC family and get that 2nd opinoin.
Also make sure that the oncologist has some working knowledge of CC or has a database of colleagues that he/she can tap into for necessary answers. Write down your questions and get answers to them, don’t let the oncologist brush you off. They are working for your Dad and they should be able to spend time answering questions to your satisfaction. If they say “No” you need to ask “What else can we try”. Make them think outside the box.
I’m certain that others will also chime in and give you more information. Remember there is no such thing as a dumb question. We all start out that way but to be knowledgable is the power, so do your research and find out all that you can regarding CC.
I hope this helps! And welcome to the site that no one ‘really’ wants to join, myself included. But this site has saved my sanity for the past three and 1/2 years.
Go with God, prayers are coming your dad’s way from Wisconsin!
and KEEP KICKIN’ THAT cancer.
MargaretHello Everyone,
My dad was “kind of” diagnosed with CC about 1 week ago. He started getting severe back pain and his general doctor told him to go to the ER. That is where a bunch of test were done (CT scan, blood work, MRI, etc). They found tumors in his lungs and liver through the x-rays and did a biopsy and that’s where it was confirmed it was cancer. Last Thursday was the day they put it all together. Our current oncologist says they “believe” it started in the pancreas or the gallbladder and since the pancreas looks good, then CC it was. They gave us the stats of 3 months to live w/o chemo and 9-12 months with chemo. Currently we are waiting for the authorization to start chemo but I’m wondering if it’s a good idea to start the chemo with this doctor while at the same time schedule a 2nd opinion with another doctor at the USC Cancer Center once we see how my dad is reacting to chemo which will be in about a month. I’m worried that if I wait on the chemo in order to get a 2nd opinion I may be wasting precious time to start fighting this disease. It is stage IV. I plan on booking an appt with Dr. Anthony El-Khouieri, who I found on this site on another thread. My dad went from being not only my father, but my hero. He is ready for the challenges ahead and he is ready for this fight. Thank you so much and I hope you all are doing great. Keep fighting, or should I say Fight On!
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