May 3, 2014 at 11:25 am #81985
Thanks again for all the relies.
Gavin, it was the churchill hospital in Oxford and the queen Elizabeth hospital in Birmingham… The surgeon at Oxford is Mr Reddy, and at Birmingham is Mr Merza.
The second opinion went well and they are of the same opinion, as Liz is young and healthy removing 75% or her liver! right love and all bile duct and some lymph nodes to test is the best chance of a cure! the biopsy following that op though will tell a bigger picture and will be scary but one day at a time and we need to op out of the way first…. Which is on 28th May.
Steve.May 3, 2014 at 5:36 am #81984gavinModerator
Welcome to the site. Sorry that you had to find us all here and I’m sorry to hear about Liz, but glad that you’ve joined us all here as you’re in the right place fr support and help and I know that you will get tons of both from everyone here. I too am in the UK, from Dundee in Scotland and came here after my dad was diagnosed in 2008.
Is it the Radcliffe Hospital in Oxford where Liz was diagnosed and where in Birmingham are you going for that 2nd opinion. who is the surgeon? Sorry for the questions! You are so doing the right thing in learning as much as you can about all of this as the better informed you are the better the decisions you will make when it comes to making decisions about everything.
Please let us know how everything goes and if we can help in any way then please just ask and we’ll do what we can. WE are here for you.
My best wishes to you and Liz,
GavinMay 2, 2014 at 9:07 pm #81983claremSpectator
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.
ClareApril 30, 2014 at 4:08 pm #81981angelmarSpectator
Steve – sorry for this short email but I had 85 % liver removed, gall bladder (cancer) bile ducts, bit of small intestine, lymph nodes, portal vein excision in August 2010. Thought it was going to be simple gall bladder removal.
Found this website invaluable, and the AMMF one.
However it was the staff at Maggie’s Cancer Caring Centres who helped me stick together my mind body and soul so get to one if you can. If not, check them out online.
My husband and daughter decluttered our house, streamlined as much as they could in order to keep things as clean as easy as possible for after the op. We gave all our house plants away, did not have flowers (heard about microbes) and they made me a lot of vegetable juices after the op to help build up my strength. Meditation, mindfulness, visualisation. Canceractive for help with food. Gerry Potter’s Salvestrols.
Try and see if you are eligible for the Bilcap trial……I was on the chemo arm and had 6 months of Xeloda.
I had 1 kilo of tumour removed, positive resection margins but supported by web of prayers and positive support. My daughter read the statistics. But there is a lot of ‘don’t know’. Thoughts and prayers with youxxApril 30, 2014 at 12:53 pm #81982
Thank you for all the replies, it does feel good to talk to people who know exactly what Liz (thought I should put a name to my fiancée) and I are going through.
pfox2100, I hope you are doing well… the similarities between what you have been and are going through is very similar to Liz, and although I feel like i have a million questions I am also struggling to ask any…. am definitely still in a state of shock from this.
Iowagirl, we live in England so we are at Oxford hospital which is a very good and renowned hospital for liver surgery etc… And also on Friday Liz has a second opinion with a guy who really is top of his field based at Birmingham Hospital which is considered one of the best if not the best. So this is all good and positive.
The reason they are operating for a second time is because where they went to give the tumour a 1cm clearance margin all the way around but it touched the bile duct so where unable to where it hit. The second op they will remove all the bile duct and 75% of the liver, now that they 100% know that it is cholangiocarcinoma. Which does also beg the question of is it Intrahepatic CC, they have not told us that it is. The gallbladder was removed purely because of the gallstones by the way.
I have been trying to read up as much as I can and actually for me that is the way that i deal with things generally…. however all the stats and prognosis does not make for good reading and although I know that each case is different this is scaring me more than anything. Liz will not look at any of the stats which is arguably the best way to deal with a situation such as this.
Thanks again to everyone.
SteveApril 30, 2014 at 2:38 am #81980darlaSpectator
Steve, I also want to add my warm welcome to you. So many of us felt much as you two are feeling right now. What is it? Why did this happen and on & on. I wish you hadn’t had to find us, but am glad that you did and you will be too. I wish you didn’t have a need to be here, but know that this is the best place to be for help and support when dealing with this disease. Your fiancé has a lot going for her. Her age and her good health previous to diagnosis and also the surgery and ability for more surgery. We are all here for you to help in any way that we can. Keep us updated as to how things are going.
DarlaApril 30, 2014 at 2:17 am #81979kvollandSpectator
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.
KrisVApril 30, 2014 at 12:44 am #81978marionsModerator
Steve…I would like to follow the others and welcome you to our site. In addition to what has been mentioned already, you might want to down-load the biliary book, written by 2 physicians and supported by the Cholangiocarcinoma Foundation. It is free and you may access it with this link:
Additionally, Helen, founder of AAMF is located in the UK. Her website offers a variety of information solely focused on all aspects of this cancer.
Most of all though, stay positive. Your fiancée is young, healthy and is supported by a loving partner. That and the appropriate clinical support is a recipe for success.
MarionApril 29, 2014 at 9:11 pm #81977iowagirlMember
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.April 29, 2014 at 4:20 pm #81976pfox2100Member
Hi Steve, yes wonderful to hear that they were able to remove it and find it when they did. But sorry you had to learn about the diagnosis. I just turned 35 and too have been healthy throughout my life. My tumor was quite larger and I did have a resection in January where they did most likely the same or a very similar surgery it sounds like your fiancee is going to have. They removed almost 80% of my liver, gallbladder, rouex en y, lymphs, etc. Do you have any specific questions about the surgery or post op? There is a lot of info but I am not quite sure what kind of info you are wanting Hugs and blessings to you guys.
PorterApril 29, 2014 at 4:17 pm #81975lainySpectator
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.April 29, 2014 at 3:35 pm #81974lisasSpectator
I’m so glad they caught your fiancée’s tumor while they could remove it. While I was 20 years older at diagnosis, I was also healthy and fit and it came as quite a shock. I expect that is true for a lot of people on this forum. I wasn’t able to have mine operated on, so I can’t offer any advice on surgery. I’m sure others will chime in who have had surgery.
It’s a great support group here.
Best, lisaApril 29, 2014 at 12:40 pm #9894
I am new to this site and thankful for having found it. I am writing on behalf of my fiancée who was 3 days ago diagnosed with cholangiocarcinoma.
She is 36years old, slim, healthy and has shown absolutely no symptoms related to cholangiocarcinoma. Following a CT scan for gallstones they found a 6cm tumor on her liver, but couldn’t identify exactly what it was. Due to the size of the tumor they decided to surgically remove it a month ago, by removing 40% of her liver along with her gallbladder. Following a biopsy, much to our horror they confirmed it as cholangiocarcinoma. The doctors were almost as shocked as us we were.
The procedure now is to wait 1 month which will be 2 months after her Op and she will be fully recovered, plus her liver would have grown back, then they will surgically remove 75% of her liver, along with her bile duct, and close by lymth nodes for testing.
The original CT scan showed nothing on her bile duct and a recent blood test has shown no tumor markers.
As you can imagine this was/ is all a great shock to us both and I guess I would just like any advise that anyone can give, thank you.
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