Topic: Hello to everyone

Let me introduce myself.  My name is Ron and I feel lucky that I live in Scotland.

I have looked through all of the postings and, to be truthful, I am not sure if I really belong here.  I find everything that is written shows a great degree of knowledge and I find I am learning a great deal.  I seem to know very little about my condition, my stats., and my prognosis.  I feel as though I have just wandered through it all and come out the other side. 

In June, my GP referred me to the local hospital for an ultrasound scan to confirm I had gallstones.  This was done, but the next thing I knew was that they saw an abnormality on my liver and I was to have a CT scan.  That was when I was told I had a tumour on my liver, that I would be facing a number of tests to determine the nature of the tumour and may require a transplant.  I was referred to the main Scottish transplant unit in Edinburgh and was assured that the one thing they knew for sure was that I would not be having a transplant.  If it proved to be a primary cancer then I would be a candidate for a liver resection.  Well, the tests all ran through and on 18 August I was operated on, had a great recovery and on 22 August was released from hospital.  Everyone is very happy with my recovery and the surgeon has confirmed that the biopsy showed I had an intrahepatic cholangiocarcinoma.  He is satisfied that it was completely removed, with negative margins, and that since the gallbladder has also been removed, the source of the tumour is gone.  I will not be needing chemo or radio therapy but will be scanned on a regular basis since this type of cancer is prone to recurring.

I suppose it is my prognosis that I am most concerned about.  On the face of it everything is fine but if it does recur, I will be back to square one regarding whether it can be removed by surgery.  I am 56 but none of the doctors will commit with any confidence that I will see my 60th birthday, when I had planned to retire.  I would be really interested to learn if anyone has had a similar history and what the future is likely to hold.

All the best

Ron Smith

Re: Hello to everyone

Hya Ron It is great news for you.
I am not able to help with your prognosis.
There are other people on here doing great.  I hope you continue to be healthy and happy. My oldest son has lived in scotland since 1992 and loves it there. We are also a smith family.
  From our experience with cc.  you must make every day as good as possible and enjoy your life.  My son alan ( see in remembrance) was not so lucky and was not diagnosed until it was to late, and therefor I now tell everyone to get as much information as possible.
Also get a second and even third consultation if need be.  Do not wait if you feel in need of information or help in any way. love and light

U.K.Member

Re: Hello to everyone

Hi Ron,

I often come to this website.  I figure tonight is as good as any to tell our story.  My husband was jaundiced in Nov., 2004.  He had his gall bladder removed in Decemeber.  He remained jaundiced, they continued to search and found that he in fact had bile duct cancer.  The tumor was removed in January, 2005 and he was given the all clear.  The oncologist said that chemo was unnecessary. This summer, he began losing weight.  In August of this year, they found three "spots" on his liver.  After a pet scan, it turns out that he had multiple lesions in his liver, mets to his lymph nodes and his vertebrae.  He had lost over fifty pounds, no appetite and no energy.  He stayed in bed all day. He was in severe pain and was weak. On October 16th, he was placed on a chemo regimen of Camptosar and Erbitux.  Due to his liver biopsy, he had to wait until last Monday to start Avastin.   Within two weeks, he seemed like his old self.  He has been going non stop.  I pray Ron that you are done with this disease once and for all.  Everybody's case is different. I hope I have not discouraged you because there are others who have not had a recurrence.  The doctors do not have the final say and you could live well beyond 60.  Our doctor actually has another patient who was similar to my husband's case who responded well to chemo and has not had a recurrence - three years and counting.  Enjoy life.  No one really knows what your future holds.  Anything is possible.

May God Bless You,
Belena Turner

Re: Hello to everyone

Thank you very much for taking the time and trouble to read and reply to my posting.  I know that I find talking about what has happened to me is a large part of the healing process and I hope that you all feel the same.  In reality I am not as despondant or concerned as my words may have made me appear.  In fact, I am quite positive.  I believe the tumour was found, by chance, quite early and had not spread but it is still a bit of a worry.  In the words of my GP shortly after my surgery..."Someone up there likes you, or, perhaps not!".  I suspect I was like most folk and prior to my diagnosis, new very little (nothing) about my liver and the rest of my inner workings.  I had never had any illness worse than the occasional cold or bout of flu and even when I was having the scans I felt really well and thought I was destined for a very common, straightforward, gallbladder operation.  Well that notion was quickly dispelled and since that time I have spent a lot of time trying to learn as much as I can about liver cancer.  What I have found out is that it is wideranging and extremely complicated.  I now realise just how much information I need to get from my consultant but when you only have an appointment every 3 months that can be difficult.  Perhaps it is different in the States?  Anyway,  I hope to learn a lot here and be in a better position to ask the right questions at my next appointment.

All the best

Ron Smith