April 26, 2014 at 5:44 am #81828iowagirlMember
Olga, I don’t have a lot to add, other than I had at one enlarged Hilar lymph node (near the liver). When they did my surgery, they removed 6 of the Hilar lymph nodes and the pathology showed that there was no cancer in any of the removed lymph nodes, including the enlarged one. Lymph nodes can be enlarged for various reasons, and in particular if there is an active disease process.
Hugs from Iowa,
Julie T.April 26, 2014 at 4:55 am #81827okansasParticipant
I’m so sorry. Having been where you are, I know that it’s so difficult to even believe this is happening — thus the feeling it’s a nightmare from which you will awaken. This kind of news can leave a person in terrified, shock-filled pain. Take it a step at a time, a day at a time, a moment at a time. Being on this site and getting information from so many people experienced in this fight is the best thing you can do — so take some solace and comfort and strength from that.
Come here as often and whenever needed. Ask whatever questions you have. This is a family that shares its knowledge and then backs it up with caring and kindness and support. Again, I’m sorry, there is no rhyme or reason or fairness. But you are not alone.
MargaretApril 26, 2014 at 4:22 am #81826marionsModerator
Olga…..welcome to our special group. Like you, none of us wanted to meet here, but given the circumstances, we are glad to have found each other.
Like you, the majorities of us never heard of this disease prior to diagnoses let alone know how to spell the word of Cholangiocarcinoma. I just know that you will receive a warm welcome from many others; all know how you feel, what you fear, and how confused you might be.
Educating yourself about this disease is one of the best things you can do for yourself and for your dear husband. Knowledge empowers you to make educated decisions. This link will lead you to a book explaining most of everything pertaining to this disease. It is free for download:
You are correct in your assumption that lymph node diagnoses requires a biopsy however; I assume that the physician you have consulted with at Mayo, based their evaluation on their vast experience with this cancer. However; with a cancer such as this, you can never go wrong with obtaining additional, expert opinions.
I am sure that others will join in and share their thoughts with you as well. Know that you have found the right place. We are in this together.
MarionApril 26, 2014 at 4:20 am #81825kvollandParticipant
Hello Olga –
Welcome to the best little family that no one really wants to be a part of. We are here for you. So sorry that you were hit with the awful disease like that. And on the phone no less. My husband was diagnosed almost a year ago and believe me it hit us hard too. And as far as not knowing about it…I didn’t know a thing and I am a nurse.
I would say about the changes in the scans may have to do with who is reading them. Radiology is only as good as the doctor that is reading them so I would take it all with a grain of salt. I know we were told that when this all started. Also that if he is laying on the table slightly differently that can change things too. I would think that it would be difficult to say for sure that the lymph nodes are involved without a biopsy since they can be enlarged for a variety or reasons. But certainly talk to your ONC about that. They may be able to give you a better answer.
What type of chemo is he doing? Many of us, including my husband have done systemic chemo and had good results with it. Also the thought of doing it may also be scarier than actually doing it. That is the way it was for my husband the first round.
Keep us posted and good luck!
KrisVApril 26, 2014 at 4:12 am #81824lainyParticipant
Dear Olga, I am so very sorry and we all know just how you are feeling, something like being hit with a baseball bat in the stomach. How can someone get anything we never heard of, right? Just today we had a nice thread going here on to chemo or not which let me see if I can find it as it has some answers for you. To me when 2 ONCs disagree I would seek out a 3rd opinion. My husband went for quality not quantity when told after 5 years they could do no more. Let me see if I can find that thread from today and then I will edit this to include it. Know that you have come to the best place to be for CC with caring, loving and helpful people from all over the world. You are NOT alone.
Found it! At the top go in to “Active Topics” one of the 1st will be ‘risingsun’ click on that and see some posts from today on your very subject.April 26, 2014 at 3:24 am #9878sadwifeMember
My name is Olga. My husband’s name is Norbert. He’s 57, and on March 21, 2014, he was diagnosed with Cholangiocarcinoma. When the nurse practitioner was telling us on the phone, I had her spell it because neither one of us had ever heard of it. She explained that it had metastisized to the liver and that the tumor was too large and too tangled between too many organs to try to do surgery. After I fell apart, I did what I always do and went online to research it and its prognosis. The more I found, the bigger the pit in my stomach and throat grew. It wasn’t fair!! This man had lost 60 lbs. in the last 18 months by eating properly and drinking veggie/fruit smoothies. He had never in his life smoked, drank only socially during his 40’s and had always tried to do the right thing for his health. We met with a team of Dr’s and they explained that he had stage 4 CC and surgery wasn’t an option. We went to the Mayo only to be very disappointed when they told my husband that he had 6 months if he did nothing. But my biggest questions came when the Mayo told us that there was no change from the first scan to the scan that they did and 2 weeks later we were at Henry Ford in Detroit and they were telling us that everything had grown. Also the Mayo told us that it had spread to the lymph nodes but Henry Ford told us that the only way to know would be to biopsy a lymph node. So how do we know who to trust and believe? We have at this point agreed to do an enmbolization of the liver, which is all that he qualifies for. They have determined that embolization is not an option for the tumor so the Dr convinced Norbert that systemic chemo is the only option with embolization to reduce the size of the large tumor. After hearing from him since the beginning that he would not do systemic chemo I have to admit that I was glad he wasn’t giving up and was willing to fight this as long as he could. Although, I’m not sure this is what he wants. When we were at the Mayo and we were told that it had spread to his lymph nodes. I broke down. He only looked at the nurse and said that he had only come here for his wife. That’s when I knew he accepted the hand he had been dealt, but I couldn’t accept it. Or at least I wasn’t going to accept it as gracefully as he was going to accept it. I used to say that between my yoga in the morning and my wine at night I could handle everything in between. Unfortunately, I never seen the curve ball that was coming my way and I am still trying to recover from the blow that hit on March 21. He is scheduled for embolization on May 9, and chemo after that. I know he doesn’t want to do the chemo, yet he has agreed to do it. Is it because he doesn’t want to give up on life or is it because he wants to make me feel better about his decision? I feel like I should be waking from this nightmare any minute, but unfortunately I wake up to the realization every day that I have to face what’s coming. Very few people know the truth as of yet and any words of wisdom would be greatly appreciated now!!!
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