36yr Old female with cholangiocarcinoma

Hi Steve,

Sorry I’m coming to this thread late but as always, many have come to welcome and help you.

Marion has already mentioned AMMF – I cannot tell you how much support my family has received from Helen who set up the charity. My sister was 41 when she was diagnosed with Cholangiocarinoma – well one day and very suddenly ill the next. Surgery in relation to this disease is a great word to hear and if Oxford are a renowned liver centre then you are in good hands. The AMMF website has more information on specialist centres/specialists if you need it.

I also echo Angelmar’s comments about Maggies. It was a haven for all my family and again support, advice and place of calm to go to when we needed it

I would have been lost without the support of this family too. There is always, always someone to listen and answer.

I read everything I could to do with my sister and yes the stats do make for very hard reading. For me I needed to know head on what we were dealing with. However every person is different and there are some stories of hope and encouragement hear. Your fiancés, is already one of them.

Clare

Steve –
Welcome to the best little family no one wants to be a part of. Surgery is the best thing you can hope for and since you have one and getting ready for another you are miles ahead. It is shocking to hear those words….I am a nurse and didn’t even know what it was. I looked it up just like everyone else and found this wonderful family.

We will be here for both of you. And sending positive thoughts for both of you.

KrisV

Steve, I hesitate to say welcome, but in the same breath, I truly mean “welcome” with all my heart. I have a “few” years on your fiancee. ….like….uh….like 27. She’s about half a year older than our son.

I was diagnosed with intrahhepatic cc in Feb and had surgery to remove two sections of my left liver node for a 5 cm x 4 cm x 4 cm main tumor and a quarter inch tumor (the latter found on surgical ultrasound at the start of surgery). I also had 6 lymph nodes removed and they were negative along with a 2.2 clean surgical margin, as well as the pathology showing no neural invasion or vascular invasion found. (That means they looked and didn’t see anything, but can’t definitively say there isn’t any…still, a good direction in any case.) Did they check your fiancee’s biopsy/pathology for these two invasions? They are important, because this cancer can spread through lymph nodes, nerve and blood pathways.

Where was the first surgery done?

I, also, did not have the more common tumor marker C19-9 elevated and all of my liver function tests were in the very normal range. There were no symptoms they could identify to say I had CC, but that isn’t unusual with intrahepatic CC either. That’s why it’s rarely caught early enough to do anything…it hides until it’s too late. Mine was caught similar to your fiancee’s…when I went into the doctor’s office for something else and after a CT was ordered, the large tumor was seen.

My staging was T2b, but it sounds like hers “may” be T2a, depending on how they use the size of the tumor (similar in size to mine). I would be curious to know. Mine was T2b because of the tiny extra tumor found a short distance from the bigger tumor.

Did they remove the gall bladder because it had stones in it, or because they felt the gall bladder was involved with the cc? Again, I am just curious.

My advise….read, read, read….as much as you can to educate yourselves about ICC and its treatments. (I’m assuming her tumor was “in” the liver tissue itself and not in the main duct…that is…is it actually Intrahepatic CC?) The more you can read, the better you can help your fiancee to make educated decisions. As the patient, I found it very difficult to read the information, as everything sounds so dismal, but there is hope. That doesn’t mean that she won’t cry…or that you won’t cry with her or by yourself in “those moments,” but as you become use to the way things are…not what you wish they weren’t, it will become some easier.

If your fiancee is not at a major medical /cancer center, I suggest getting to one for the actual surgery. Even my local oncologist did not want me to have the surgery here locally, and we have two hospitals, at least one being a top 100 hospital and the other a major cancer center. The problem is the rarity of this cancer, with ICC being even rarer, and most oncologist probably will never see a patient with this in their practice lifetime. Thus, they don’t have the expertise to deal with it. In addition…and the biggest reason given to me to “get out of Dodge,” was that the surgery for this cancer and liver surgery in general, takes a special surgeon with much expertise, which is generally only found at major medical centers. There are a number of them mentioned often on these boards…MD Anderson, being the top cancer center in the US, followed by several others…Sloan Kettering, one in St. Louis, Mayo Clinic in Rochester and in Texas, John Hopkins, Mass Gen. I know there are others, but my memory is shot today. I made an appt myself before I was finally diagnosed to go to Mayo in Rochester, MN and it was a good decision. My surgeon ONLY does surgery on the pancreas and liver and actually is doing research on CC as well as a professor at their School of Medicine. After every other doctor, pathologist and radiologist (except a substitute oncologist here locally who was “sure” it was bile duct cancer)chewed their nails over what to diagnose. That included some doctors at Mayo as well, the surgeon took one look at the images and said, “I’ve seen this before,…..this is bile duct cancer.” Just like that….in a couple minutes. But, that said, this cancer is hard to diagnose sometime when the markers just aren’t there and the initial biopsy isn’t conclusive for anything but being an adenoma type cancer….and then they say it’s a cancer of unknown primary until they hopefully figure out where it came from. Personally, I was hoping for breast cancer if I had to have one……better survival odds and a boob job to boot. Even my oncologist commented that “This isn’t a good one to have.” Nobody wants ANY cancer, but we don’t get to choose….this is what we have to deal with. But, anyway, the poor “girls” will have to stay the way they are in my aging body. ))) ))))

I’m somewhat surprised that “they” are going to do another surgery and remove even more of the liver, after removing 40% in the first operation, unless they didn’t get a clean surgical margin or something else with which I’m not familiar. What did they tell you was the reason?

I know it’s really a punch in the gut,…..and it feels like nothing will ever be right again when faced with this crappy disease. But, as I said before….read all you can….just be careful to stick to the main cancer treatment centers and studies and you’ll be fine. The main problem I’ve had is having a really great friend, who just doesn’t get it. She really believe that thinking positively will cure you and if you can’t think positively it won’t turn out well. Mayo Clinic says that is a myth. No one can be positive every minute of the day and everyone has bad days. It IS true that if you “can” have a hopeful and positive attitude, you will be better able to enjoy the life you have. It’s just that when someone gets cancer, suddenly there are certain people who just won’t allow it…talk of bad tests results..saddness…..they become your “mental health police.” I’ve found finally that the best thing to remember with them, is to not give them too much information on the disease itself, because IMO, the problem is “them.” They are the ones who can not handle the diagnosis and esp the prognosis and denying you the right to feel crappy or sad once in a while is their way of coping. If they don’t see YOU feeling that way, then they don’t have to either. That said, this person is the sweetest gal and one of my very best friends who would do ANYthing for me (and has already). She is there to take me to the doctor or tests when my husband can’t and has made us food countless days as I recovered, and gets me out of the house even when I hurt and would rather not. I just have to remember that each person in my life has different qualities and once you recognize what that person is able to do to help you, and what they can’t, you honor that and stop pushing them to live the crap part of this cancer with you. It took me a while to understand this. You two may or may not have someone who is willing to listen and understand that you just need to vent off frustration or sadness sometimes…but if not, we’re here to be that ear…no judgments,….only understanding, because we’ve all been there.

The days to come will be hard to get through as a couple….but if you can get through this together, you can get through anything over the course of your marriage. My husband and I have been married for almost 39 years and have been through some pretty awful stuff over the years, but each time, we stood strong and faced everything head-on, coming out on the other side with an even stronger and I might add, more “tolerant” marriage. (Yeah…I wasn’t a perfect wife at first. )

Julie T.

Hello, Steve and welcome to our extraordinary family but sorry you had to join us. We all remember what a shock it was, like what the heck is CC? Fortunately this was found quickly and it sounds like you have good aggressive ONCs who got right in there and are taking splendid care of your fiancé. I can’t give advice on her surgeries as my husband had a Whipple and that was 8 years ago, a lot has changed. Surgery is one of our favorite words.
Congratulations on your engagement and best of luck to your fiancé.