September 15, 2010 at 12:47 am #41344jathy1125Participant
Cale-don’t despair. I am a cc survivor. It took 2 transplants, 8 ercps, chemo, chemo and radiation, and oral chemo!! I was diagnosed July 2008 and was told 6-8 months, my only symptons was being itchy. I am Gods miracle. The Mayo Clinic is the place to be. My miracle team was at Barnes-Jewish in St. Louis MO. Those 2 hospitals are the best. It took a long 2 years, but i can finally wash the dishes in the same day-haha!! There has been plenty of setbacks, but the power of prayers got me there. You will look back at this time with amazement at your strength. I asked Dr. Chapman when I was first diagnosed if I would see our only child graduate college and he said i would. I watched her May 8 2010!! We will keep you in our prayers.September 8, 2010 at 10:02 pm #41343kentuckyjackMember
Welcome once again to the club nobody wants to join, but whose members embrace you with informed loving support. Thank God you have a family to live with and for. You are so blessed in that way, and it seems from your post that you already have a mature, sensitive, positive understanding of your situation and many possibilities of all kinds ahead of you.
Like you, I was diagnosed after a trip to the ER last November with jaundice, and about two and one-half months later the correct diagnosis was made of Intrahepatic Cholangiocarcinoma, the rarest of a rare kind. A first surgical opinion from a general surgeon was for surgery–but a second opinion from a hepato-biliary specialist surgeon at an NCI-affiliated cancer center ruled that out. My “huge tumor” had and still has too much vascular involvement, although there are no detectable metastases. 3 1/2 months of chemo shrunk it to about 1/2 to 3/5 its former size, and I’m just completing a clinical trial of Stereotactic Body Radiation Therapy which the oncologists say has a 60-70% chance of stopping further growth of the tumor, and possibly killling off much of it. All along I’ve been doing nutritional supplementation guided by a Nutrapathic Cancer Specialist (Naturopathic Physician) who works for the Life Extension Foundation. I’m feeling good and functional at present, and have a tentative plan to continue with adjuvant chemotherapy in a month or so.
I share this in hopes it gives you options you may not ever need–so I’m hoping surgery is completely successful for you!
God bless you and yours.
_TomSeptember 7, 2010 at 10:30 pm #41342rick-kampMember
Sorry you had to find us, but very glad to hear that surgery is an option for you. That is the very best chance you have at beating this cancer is with surgery. And the Mayo Clinic is the very best place to be, IMO.
You are not alone in your age and life circumstances. This cancer does strike younger people also. There are many here who were diagnosed with this cancer in their 30’s or younger. I am 33 now and have been battling this cancer for a little more than a year now. I am also married and have 2 children. My family is the absolute best and I fight as hard as I can for them. My wife was about 5 months pregnant with our 2nd child when I was diagnosed with this cancer, so I can relate to that feeling.
The best advice that I can offer you is to have a positive attitude, learn to accept that you will have limitations as you prepare for and recover from the surgery (and any chemo or other treatments afterwards?), and accept all of the help that people offer to you.
You will be in my prayers for a very successful surgery and that you will be one of the people that beat this cancer!
RickSeptember 7, 2010 at 4:17 pm #41341linda-zParticipant
Welcome to the greatest support site you will find in your battle against CC. I echo all those sentiments of the previous posters in what you have going for you….your young age and surgery.
I will also say, I had surgery Apr 2009 and had follow-up chemo. Chemo didn’t work for me as I’ve found now, but like Kris mentioned, she will always wonder if chemo would have helped her….I wonder if radiation would have helped me. You are young so that is in your favor with dealing with surgery, as well as follow-up chemo and radiation. If given the option, I would hit this cancer with everthing you can right out of the box. Don’t give it a chance to get another foothold. At least you can say you tried everything you could.
Listen to your doctors, consult this board, and make an informed decision. Don’t just rely on your doctors for your knowledge. Find out all you can to make knowledgeable, informed decisions.
Come back often to share and gain as much as you can from us. Good luck on Wednesday with surgery, and may God’s speed be with you in your recovery. We look forward to hearing how you ace’d it!
Linda Z.September 5, 2010 at 2:35 pm #41340hollandgMember
I also wish to welcome you to this wonderful site – you will find great support here as you battle with CC. Bob as pointed out 2 big positives that you have going for you; you are young and you are a candidate for surgery. Hang on to these positives. I was diagnosed in October 2009 and had surgery last May. I’m now carcer-free and back at work as normal.
Good luck…………………………..GerrySeptember 4, 2010 at 3:38 pm #4133932coupeParticipant
Understanding how frightening this all can be, you still have cause for hope. Two important things working for you are that you are young and that you are a candidate for surgery. Those are good indicators of a successful outcome. I am praying right now for the surgery to be completely successful and for God to give you a speedy recovery.
Grace and Peace,
bobSeptember 4, 2010 at 2:29 pm #41338darlaParticipant
I too am glad you have found this site. Dealing with CC is not easy as it is so rare and there is not a lot of information out there. This is the place to be. You are young and have a great attitude. I am hoping for you to have a successful surgery. Come here whenever you need to talk or just to vent. There are a lot of good people here all ready and willing to help and support you.
Take care Cale.
DarlaSeptember 4, 2010 at 1:39 pm #41337dmeekParticipant
Cale, I welcome you to our site and truly sorry you had to find us. I was 46 when I was diagnosed with CC and it was scary for me too. Your being a candidate for surgery is huge in fighting this. The doctors caught mine early and I was able to have surgery. In 2004, I had a liver resection surgery and follow-up chemo and radiation. I am now a 6+ year survivor and basically cancer-free.
We do not know where the road of life will lead us. And know too you do not have to go through this alone, as we can share our stories and support for you on this site. My prayers for you and your family, and for a successful surgery.
DaleSeptember 4, 2010 at 1:36 pm #41336gavinModerator
Welcome to the site, but I am very sorry that you had to find us all here. But please know that this is the best place that you could have come to on the internet for support and help so please, keep coming back. We are all a very friendly and helpful bunch so feel free to ask as many questions as you have and I know that there will be someone who can help.
Now that you have joined us all here you have loads of people to speak with about this and everything surrounding CC. I was my dads carer during his fight with CC and his first symptoms were the same as yours, the jaundice and his CC was deemed inoperable. It is good to hear that you sought a second opinion and that you can have surgery and I will be keeping my fingers crossed for a successful outcome on Wednesday. You are not alone any more and there are people here who understand what you are going through, so please keep us up to date with how you are doing.
My best wishes to you,
GavinSeptember 4, 2010 at 10:10 am #41335cmParticipant
I am so very sorry to hear your story. My husband was diagnosed with CC in May as a total shock. Unfortunately surgery is not an option as it has spread to both lobes of the liver. We have a wonderful little girl who just turned one. She is our inspiration. There is a thread about long term survivors that you should look up.
Remember that the chances of doing well are better than the chances of ever getting this. Very unlikely good thngs happen as often as not so good things.
I know only too well the fear and desperation in your wife’s prayers and thoughts and my prayers are with you too.
CarolineSeptember 4, 2010 at 5:08 am #41334devoncatParticipant
Yep, I had just turned 32 when I was diagnosed. I had surgery, but it came back unfortunately…however, another member Sue had her surgery at the same time as I and she is still cancer free so there is hope.
It is very scary getting diagnosed so young when you think your life is just starting. I had just moved to Sweden to be with my husband and had just handed in my PhD. I was going to take the world by storm but instead fate had a different plan. I was cancer free for 2 years before my reoccurance and I am still going strong…some days better than others. And I am not going anywhere anytime soon. So yes, it is bad, but you are lucky to have the chance with surgery and who knows what the future holds. I tell my doctors there is a big difference in 2 months and 2 years and lets shoot for the 2 years. You dont know where life leads, you cant control the road, but you do get to control the radio so pick the best music and see where you go.
The one thing i regret is not having chemo after surgery. I wonder if my cancer would have stayed away if I had had it.
KrisSeptember 4, 2010 at 4:19 am #41333lainyParticipant
Dear Cale, welcome to our wonderful family and I am truly sorry you had to find us. You are not alone though as our Kris was about your age when she was diagnosed and she is still being sassy as ever. We also have a member who is in his 13th year after surgery. Where is the location of your CC and what kind of surgery are they going to do.
A good attitude is the best RX and reading up as much as you can about CC is helpful as knowledge is powerful. We will be sending our best wishes and tons of prayers your way for a successful surgery on Wednesday. Please keep us posted, you are not alone.September 4, 2010 at 2:44 am #3966caleParticipant
I’m 31, and I was just diagnosed. I have had jaundice for 2 months and they were finally able to figure out what was causing it. I have been to the Cleveland Clinic in FL, and I am now going to have surgery on Wednesday at the Mayo Clinic (where we went for a second opinion). I have been married just over a year and my wife is pregnant. I am terrified I am going to leave the both of them alone in this world. I know I have to fight, and they are my motivation, but I can’t tell her my biggest fear is losing the fight. My prognosis is not good, but I like to think it is 50/50, it works or it doesn’t. It is nice to see a place where so many of you share similar stories. I feel for all of you who know someone who has lost the battle, and I am inspired by all of you who continue to fight. I don’t know what is going to happen, but I do know it is out of my control now and I believe I’m in the right hands. I am extremely young to be diagnosed with this and I haven’t figured out if that is a good thing or a bad thing. I don’t really have anyone to talk to about all of this so that is how I ended up here.
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