Topic: Newly Diagnosed

Hi All,

My name is Jim and I live in Iselin, NJ and I'm 48 years old. I was just diagnosed with cholangiocarcinoma last week. I'm told it has spread to my liver and lungs and surgery is not an option.

My Doctor has recommended that I now obtain a second opinion. I'm thinking of the Cancer Institute of New Jersey (in New Brunswick,NJ), but I'm not sure if this is the correct place. This is one of the places that my Doctor recommeded, but I'm not clear if they specialize in this condition.

Currently my Doctor is awaiting the results of a PET Scan and will probably start me on Chemo. My condition was found as the result of blod clots in my right calf. Blood thinners have the blood clots under control and looking at me, you wouldn't think that I was sick at all, especially not cancer.

Being new to all of this, I'm obviously overwhelmed, confused, and frustrated.

I began doing Internet research today and found this site. It looks like it will be very helpful.

If anyone could offer any advise for a newly diagnosied person I would appreciate it.

Best to All,

Jim

Re: Newly Diagnosed

So very sorry to hear we have another member of this best little club in the world that no one wishes to join. What you are feeling is normal for such a huge diagnosis. Not being from the East Coast I can not direct you where to go but I am sure you will hear from others soon. I can tell you that I would definitely get a second and third opinion if that is needed. Go until your gut says this feels right! You will find the best, bravest, kindest people in the world right here. Vent all you want and please keep us posted.

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: Newly Diagnosed

Hello Jim...I would like to follow Lainy in welcoming you.  She has said everything I would like to say also.  Until others have a chance to respond  you might want to peruse this site.  Major cancer centers are listed as well as discussions in re to: lung,liver or, just about anything imaginable pertaining to this cancer, and beyond.     
You might also want to play around with the "Search Function" and enter "lungs" or, "liver", or "metastases."  Here,you will find a wealth of information passed on from other members.
So glad for you to have found us.
The best of wishes coming your way,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Newly Diagnosed

Hi, Jim--

I'm sorry to hear of your diagnosis, but it sounds like your doctor put you on the right track by recommending CINJ. My dad was dx with cc in 12/07 and has since been receiving treatment in the Philadelphia/South Jersey area.

CINJ is a really good place to start in finding the best treatment for cc, as they have an actual Liver Cancer and Bile Duct Cancer Care Program (www.cinj.org/treatment/Liver.htm), which allows you to see different specialists on the same day, who then consult on your case. They also have affiliations with the best treatment centers in the region.

My dad has been receiving chemo and cyberknife treatment at facilities in the Cherry Hill, Mt. Laurel region that are associated with Cooper Hospital. His experience with these has been positive.

I'm not sure how useful that is to you, but please let me know if there's any other way I can be of help.

-georgina

Re: Newly Diagnosed

Hi Jim,
Here is an article which explains cc, treatments, resection, and survival rates.

http://theoncologist.alphamedpress.org/ … int/9/1/43

Re: Newly Diagnosed

Hi Jim,

We're so glad you found us! This site has been a tremendous help to me, and you'll find the people here are amazingly helpful, caring, and well-informed. You can learn a lot from everyone's experiences.

One thing you'll quickly notice is that this type of cancer is SO different in different people, so don't let anything you read here scare you. It helps if you focus on all the reasons why you should have a GOOD outcome-- you're young, strong, and not feeling sick at all.

And I want to repeat what others have said-- get a second and third opinion, and keep looking until you're sure you have the right oncologist for you.

Wishing you all the best!

Kristin

Peace, hope, and healing to all!

Re: Newly Diagnosed

Jim - I'm right down the street in Sewaren (Woodbridge) NJ. right now I'm going to Johns Hopkins in MD for treatment. They're one of the best in the country. I got opinions from Mount Sinai and Mayo Clinic in MN as well as an oncologist that works at Robert Wood Johnson.

If you want to talk more about it, you can email me at john@johnur.com