Introductions
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Hello jadams, I just joined this group last week. My sister (34) was diagnosed with stage IV last April. She had NO signs. She went to the doctor in December for chest pain and because she felt tired all of the time. The doctor told her she had heartburn (it was actually the cancer eating holes in her sternum) and that she was depressed. She went into urgent care in April because a lump hand formed on her sternum from the cancer. They took an x-ray and told her she was full of cancer, she had an MIR and CT scan, 3 weeks later she was told she had 4-6 weeks to live. She is still alive. She has been getting treatment at the Cancer Treatment Center of America in Zion, IL. They are wonderful there and very positive. Chemo has been hard on her, but she still has much quality of life. This summer we went to Seattle and watched the Mariners play. She did just fine. If she had hair, you would not know anything was wrong with her. It is devastating. Just remember, no one can put a number on your life. No one here on earth knows when it is your time to go. My sister should have been passed on in July and she is still here. I feel fear, anxiety, and depression are constantly knocking at my door. Do everything you can to keep them out.
VanessaHello jadams, soory you had to find us. Look up Dr. Paul Wissell at U of Penn , Not a miracle worker but very compassionate and knowledgable, my wife doctored w/ him for a couple of yrs. also great patint coordinator. Feel free to contact me for more info. My wife has battled this bastard for going on 5 1/2 yrs. and we all here know the feeling of devestation , GOD BLESS. BB
Hi there,
Welcome to the site. I am sorry that you had to find us all and I am sorry to hear what you are going through right now. Lainy is right in what she says about seeking a second or even third opinion and that is what I would do if I were you. I hope that others will chime in and share their experiences of the various cancer centres in the US, but in the meantime, here is a list taken from the page on this site that Lainy mentions.
http://www.cholangiocarcinoma.org/majorcancercenters.htm
I know that it is hard, but please try and stay strong. I came here back in 2008 when my dad was diagnosed with inoperable CC and everyone here helped me so much, and I know that they will do so for you. I know that you will have further questions to ask so please feel free to do so and we will all help if we can.
My best wishes to you,
Gavin
Dear jladams, welcome to our wonderful family and so, so sorry you had to come to this site. My suggestion would be to get a second opinion and you have quite a few good places in the East. John Hopkins, Sloan Kettering and I just know you will be getting some more names here today. Where you found the introduction site there is also a site for Clinical Trials as well as Hospitals. Words cannot explain how it is to be where you are at right now, but try to stay strong for that other opinion. We always try to be realistically optimistic. Please keep us posted, we care.
Hello-I was just diagnosed on Tuesday, October 26th. I have a non-resectable tumor that surrounds my hepatic vein and hepatic artery (10cm). Tomorrow I will receive a phone call from a Dr. Hertl at U of Mass-he may operate on me (I seriously doubt it). I am completely devastated and told I have 6 mos. to 1 year to live.
I have no jaundice and of course have had very little symptoms of cholangiocarcinoma. My CEA is normal. My husband is also devastated.
I am very depressed and cry most of the time. I will see my oncologist tomorrow. I am also going to U of Penn on Tuesday to discuss a clinical trial. I will go anywhere in the US for help.
I don’t look sick at all-I have no pain just some gas.
I have alot of support from work – am scared to death of chemo and from everything I read it does not work.
Any suggestions would be helpful. I will be 59 in a few months. I want to live! Thank you in advance for all your help!
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