Topic: Metastatic Cholangiocarcinoma

Hi- I am wondering if anyone has any information on how long it takes for this cancer to develop and metastasize.  I lost my Dad early in January of this year.  He was diagnosed in late October of last year.  He had no symptoms of this illness. It was discovered when he presented with leg pain, and by then he had severe mets to the bone and could only receive palliative treatment.  We are trying to put together the pieces, and although the answer does not change the outcome, I would like to have an idea how long my Dad may have had this in his body.

Thank you,

Missing you

Re: Metastatic Cholangiocarcinoma

Oh, I am so sorry to read of such a sudden loss for you.  I don't have any definite answers...when my husband was diagnosed last summer, the docs said maybe he'd had the liver tumor "about a year and a half."  At least that's what I remember, but I think it was just a guess.  The CC tumor was discovered on a follow up scan to a prostate biopsy.  Otherwise things may have followed about the same schedule.  Tom started getting abdominal pain in fall of 06 and really bad reflux and a little bit jaundiced.  I'm sorry I can't offer more but just want you to know you're not alone in the wondering.

Re: Metastatic Cholangiocarcinoma

I do not think anyone can tell exactly how long a tumour has taken to develop.  When I was first diagnosed in July 2006 I asked the very same question. I felt I wanted to know if I could recognise a time when something happened.   Did I maybe injure myself and just shrug it off or had I had a virus or something else a bit unusual, but not given a second thought?  The best the surgeon could offer was that it could have been there for some time.  But I don't know if that meant weeks, months or years.

I was fortunate that my diagnosis was made before I had any real symtoms and was able to undergo a partial resection in August.  However, the first follow-up CT scan in Februay showed spots on my right lobe.  After a few tests and a PET scan it was decided that it could be operated on again and on 29 March the whole of my right lobe was removed.  What I did learn during this period is that there is not just one type of cancer cell responsible for cc.  Some are very aggressive and so fast growing whereas others are not aggressive and so slow growing.  This also accounts for, in part at least, why some combinations of chemotherapy work well initially then seem to stop working.  What is actually happening is that the aggressive cell types are being targeted first.  These are successfully reduced but this allows the less aggressive cells to gain dominance and these then need a different combination.

I think all of this demonstrates why it is probably impossible to date a tumour.

Very best wishes

Ron

Re: Metastatic Cholangiocarcinoma

I am so sorry to hear about your dad. I myself had a similar experience.. my dad was diagnosed with extrahepatic cholangiocarcinoma on 11/16/2006- after having been in the hospital for two weeks. Two days after he was diagnosed we transfered him from our local hospital to MD Anderson Cancer Center in Houston,TX. Which we'd heard was the best cancer treatment center in the world. Although, the staff was awesome and definitely gave my dad hope- the cancer was an inevitable and a horrible experience. On 11/25/2006 at 8:00am my dad passed away- he did not undergo any treatment, other than a shunt to relieve abdominal buildup. The cancer was too advanced for anything to be done- the day before Thanksgiving my dad fell into a coma and would sparingly come back to us. My dad went from being a young 45 year old, athletic, and extremely fit guy to a weak and fragile person within the course of 2 and a half weeks. It was completely unexpected. Doctors continuously asked us how we couldn't have noticed his pain or anything previously because his cancer was so advanced, it should have taken years to develop! The fact was that we'd noticed the jaundice, but never thought anything of it. He'd complained about a back pain and went to see over 10 doctors and had several blood tests done- everyone told him the same thing, your bilirubin levels are a little high, but it's nothing to worry about. So that's what we did- not worry. From what i have read, it is suppossed to be a really slow growing cancer, but EXTREMELY aggressive. Also, depending on where the cancer started the symptoms will often take longer to arise. For example with extrahepatic cholangiocarcinoma, there is the symptom of jaundiceness, but no pain until it has metastasized into the liver. Where intrahepatic is the opposite. After my dad passed, I went crazy trying to figure out ways that I may have known that something was wrong with him. I read so many articles on the subject and still feel like i know absolutely nothing. I am sorry for the loss you have suffered and I hope that everything works out for you and your family. *much love
- Vivian

Re: Metastatic Cholangiocarcinoma

Hya all  I feel so sorry for all of us on this marvellous site.
Most of you know by now  (see rememberance) that alan had an almost identical situation to your dad, Vivian. It is I feel completely unexpected for all of us.
I have also thought that alan was so fit that he must have missed some sort of warning signs. I now have all of his records including all of the x-rays and am slowly reading everything. In his whole life he only ever had chicken pox and the mumps and a few stitches taken out. I have read about links to watercress and alan loved this even as a child. He travelled greatly and I thought maybe he had eaten some whilst he was abroad somewhere. I have been clutching at anything that could help me to understand what happened.
I am still in shock and feel so fazed on a daily basis even though it is one year on the 30th of this month. I sometimes feel he is still on one of his travels and expect him to walk through the door and tell us what a great time he has had. His girlfriend is also struggling and is feeling so lonely without him.
When he knew he was going to die he told me that in the future I must imagine him sat on a beach reading his book and listening to the sound of the sea. This is what he loved to do whilst on his travels. I hope and pray for all of us that the pains of our losses will heal with time. Teresa

U.K.Member

6 (edited by ukmember Wed, 25 Apr 2007 03:27:55)

Re: Metastatic Cholangiocarcinoma

I think all of us have asked ourselves when did it start? did we miss something?
I asked the doctors in the hospital and they guessed that my husband had had it only for a couple of months before he presented with symptoms of jaundice and inability to eat.
I don't believe that he had this cancer for a long time. I noticed two things in the month before he became ill. 1. he was sleeping more than previously. I said as much to him, and thought to myself 'I wonder if he has cancer?'  and then dismissed the idea. 2. he lost a noticeable amount of weight on his buttocks but I thought 'that's what happens as we get older'. He also noticed that his belt need to be tightened a notch. This was all in the month before he became jaundiced. His rate of weright loss was very rapid.
I was interested to read what  Ron Smith wrote that there are different degrees of aggressiveness. I think that my husband had a very agressive form. It came on suddenly and certainly the weight loss was very rapid and he survived only six months from diagnosis.
He had no chemo but I am convinced that chemo would not have significantly affected the outcome.
Patricia

Re: Metastatic Cholangiocarcinoma

Hya Patricia. Our famiy live in Birmingham. It was weird reading about your hubby.
Alan lived with his girlfriend/partner but she said for a short time that on his days of he would sleep from 11.00 pm through to at least 4.00pm next day. She was amazed that he could sleep this long and not get up to eat. She would come home from work to find he was still asleep and in bed. Of course this created a few problems and they took a break from each other prior to xmas and in January 2006 I asked him if he was eating properly as I thought he was losing weight. He was insistant that he had not lost weight. As soon as he started having problems I told him he had a gall-bladder problem but our local G.P. did not see this as the problem. His weight plummeted rapidly and he got jaundiced and 1 month  later he passed away. 
like you and I suspect others, I too am convinced that there could have been no other outcome in this instance. He did have a reasonable good quality of life until the last 7 days or so. For this I am truly grateful that we had time to talk and for our home to be an open house for all of his  friends who still continued to be part his life until the evening before he died. love and peace to everyone

U.K.Member

Re: Metastatic Cholangiocarcinoma

i have truly found relief in this site, to be finally be able to share my story and have other people to relate to.  Alan reminds me of my dad... *heh, he was always going to gym and constantly playing soccer games, trying to keep his "studly" shape. And when people would tell him he was losing weight, he'd be completely offended and flat out deny it or return an insult like- well, you look a little heavier. Such a jokester...

although it was fast, i really felt like i had sooo much time with him. My parents had only been divorced for about 2 yrs and we didn't spend much time with him. However, the week we were all in houston were some of the best memories that i have of my dad. and it might have been painful, and i'd wished he'd never had to endure something so horrible- i'm glad we had the ending that we did. What's wierd is that a month after my dad passed away, i got married and now, i'm pregnant. Turns out my due date is on the date my dad passed away. God is always with us, giving us hope, giving us life, and giving us the miracles he sees necessary to keep on living.

Re: Metastatic Cholangiocarcinoma

Thankyou everyone for this site. I have just returned from Leeds where my mum lives. i will be back next weekend. My brother is there now. Starting to noice adiffernece each time. she is very jaundice now and people stare at her when we are out. it doesn,t seem to bother her. mum was diagnosed a month ago and is at home now. She had a sore back 2 or three years ago and started to take devils claw for the pain. This worked. Could this have been the cancer starting? Did the devils claw mask the symptoms? She did go to the doc. he told her the pain was as a result of fall many years earlier. She describes the pain as an ache. Started on solphodol 30mg on sunday and she is happier today. It is so hard not knowing how long she has I am scared to go home each time. All the prayers are helping to carry us along.
Thankyou c.