Diagnosed early
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carolyn i had the same horrifying agony what you had under gone
in jan 2007 i had the first attack of jaundice which lasted for a week and disappered , at that point of time all the LFT And liver makrers were normal.usscanwas normal viral markers were negative. we thought some type of toxic jaundice or drug induced .again in august i had 2nd attack of jaundice with negative viral and tumour markers . this time mrcp had atrophied rt lobe of liver and mrcp angio shown some scarring like thing over the rt bile duct and rt portal with rt intrahepatic biliary dilation , that suspected us to cc ., i had under gone rt hepatecotomy with complete resection rt bile duct and common bile duct along with gallbladder and periportal lymphnodes and they did hepatic jejenostomy and jejeno-jejenostomy to connect my left lobe to jejenum for bile flow .this was done in the month of march 08., and ever since my usscans and LFT And ct scans and mri scans are normal. i had consulted eminent GE; And oncologist all aorund the globe and they negated for chemo or radio therapy. as my HPE Report came as well differnetiated cholangio carinoma with negarive margins of the resection. i often think about chemo and radio. but when i have seen many a cases its of no use for long time progonsis. CC is in lower spectum is slowly progerssing and slowly metastising disease . as it takes years to give symptomps and years to metastize . i truly agree with your drs in not giving chemo and radio. mind you i was only out of work for 4 weeks during the surgery in the month of march 08 and ever since back to work in full swing. summited the mountain peaks of 15000ft . and participiated in marathon walks in couple of times in my place. even my growth was of 2cms in size. let us be positive and dream good of our rest of our lives. iam a practcing gastroenterologist in india and diagnose about 50 to 60 gastro and colonic cancers per month and trea them too.
its horrible to face such and odd situation as clubbing your feelings and mixing them with my patients who has the same truama . any way i wish you a long and longer life with out any problem
Dr Mahipal indiaCarolyn45 wrote:In December ’08 at time of my annual physical my liver enzyme count was elevated. After a couple of months of tests and doctors’ appointments, none of which we definitive but everyone suspected CC, I had surgery at Oregon Health & Sciences University hospital. Dr. Billingsley removed the left bile duct which had a 2cc tumor in it and the entire left lobe of my liver. No chemo or radiation was recommended.I’m doing fine, feeling good (of course, I never felt sick; they caught it so early), and 3 mo. post surgery my oncologist thought I was doing so well he didn’t want to do a CT scan until 6 months. He did blood tests and “no problem.”
It’s been pretty stressful, as you all know, added to the death of my husband in October ’08 after his 3-1/2 year battle with multiple myeloma.
Hi Diane….I would like to echo Lainy in welcoming you. My husband also had pain in his right abdomen and severe back pain but, no one had suspected CC until his bilirubin level appeared to be very high. This prompted a MRI and a mass was found in his abdomen. There are numerous ways of finding this cancer and in most instances we have seen on this board that the obstruction was causing blockage. Your physician ordered blood tests quickly which then led to other tests being ordered, quickly. Chemo has shown to reduce tumor sizes in many of our members and I am hoping the same is true for you. If I may ask, what type of chemo are you taking? I understand how hard it is to wait for test results in fact, you will find tons of support in this trying time, right on this site. You don
Hello Diane and welcome to the best little club in the world that no one wishes to join. Sorry you had to come here but oh, so glad you found us. You are at one of the very best Hospitals and if something can be done they will do it. I know this is all so very scary in the beginning. You an learn a lot by reading our posts and don’t be afraid to ask questions. You have a great attitude and that is half the battle. Please come here often and ask away or just vent if you feel the need. We are all here to help each other.
After going to my primary care physician on 4/17/09 with complaints of pain in my upper right abdomen along with back pain, she ran some blood tests and ordered a sonogram of my liver. The sonogram showed many masses in my liver. She ordered a CT scan and referred me to an oncologist the next day. After his exam he moved up the CT scan that day an ordered a possible liver biopsy along with it. The biopsy confirmed that I did have liver cancer. After a visit to MD Anderson Cancer Center in Houston, TX I was diagnosed with cholangiocarcinoma. I have a large mass in my right lobe along with serveral smaller masses. The left side of my liver appears unaffected at this time. I am currently having 4 rounds of chemo in my home town and will be going back to MD Anderson in a month for CT scans and blood work to see if the chemo has shrunk the tumors. If it has shrunk them enough, they have said they may be able to do surgery and remove my right lobe and leave me with the left lobe. That is my hope and prayer. I am married with 3 children and lots to yet to do. I have put this situation in the LORDS hands and am waiting to see what his plan is for me. As I wait out these 4 weeks, I’m trying to keep busy and am glad to have found this site. Everyone on the site seems to be so supportive. Can’t wait to continue these “conversations”.
Hello Carolyn…I would like to follow everyone else in welcoming you to our site. Congratulations to your successful resection. I believe that until a standard protocol for CC has been developed the opinions will differ in regards to adjuvant chemotherapy. I have observed that some physicians do not recommend a follow-up chemotherapy because, it may do more harm then good and there is such a variance in responses. On the other hand we have seen, on this board, many members receiving chemo post surgery. Therefore, when in doubt it is always beneficial to seek out the opinion of other physicians. I am so glad that you have found us.
I am wishing for continued great results coming your way,
MarionDear Carolyn,
I too want to welcome you & let you know that you have found a great place for help & support. Learning you are fighting CC so soon after the loss of your husband is definately stressful to say the least and so unfair, but as you probably know from reading on this site cancer, especially CC, does not play fair. I am glad that it was found early on & that you are doing well. I am so sorry for all you have been through and are now dealing with & hope things keep going well for you. Know that we are all here for you whenever you need us for help & support or even just to vent your feelings.
Love & Hugs,
DarlaHello Carolyn, and welcome. My condolences for the loss of your husband, I can imagine that your use of the word
Hi Carolyn,
Like Kris and Lainy, I would also like to welcome you to the site although I am sorry that you have to be here. That is good that you are doing well and that your doctors managed to catch this early. The earlier this is caught the better it seems. In my Dads case it was caught too late as he showed no symptoms at all, and once diagnosed, it was too late for surgery to be an option. This is indeed a sneaky little devil as Lainy says so i hope your doctors manage to keep a close eye on things.
This is a great site, everyone is very helpful and supportive so you are in good company here. Feel free to ask any and lots of questions and I’m certain you will get loads of help and support.
Wishing you all the very best.
Gavin
Hi Carolyn and welcome to the best little club in the world that no one wishes to join. Glad you are doing so well and yes, we all know the CC stress all too well. My husband had a Whipple Surgery almost 4 years ago and his doctor kept a watchful eye on him by ordering LAB work every month and a CT Scan every 3 months. By doing this we caught the little monster when it reappeared last April where his duodenum used to be. See, its a sneaky little devil and you must keep a very watchful eye. They did get it all again but the regime will continue forever. The key here is catching it early. Honestly if it was me I would want LABS monthly with CT Scans every 3 months. I know everyone is different but to be 1 step ahead is to be armed and ready!
Carolyn,
WElcome to the site. It is wonderful news that you are doing so well and they caught it early. It really is a good sign.I do want to caution you though. I was caught early (my tumor the size of a pea) and unfortunately it has come back with a vengence. My blood work was normal and it never showed up on any MRI or CT scan, but now I have a grapefruit size very thin tumor.
I did not receive chemo after surgery, I fell through the cracks when I moved from Scotland to Sweden. There was a recent study that suggested that chemo after surgery gave better results. However, as I say this we have had many members receive chemo after surgery and the tumor came back. Yet, you might want to push your doctors to get a little chemo. The new drugs are not as “bad” as the older ones and many people tolerate it well.
I am not trying to scare you or anything, but I want everyone here to get all the information.
It sounds like they caught it early adn that is indeed a wonderful blessing. You are in the good group and things are stacked in your favor.
Kris
In December ’08 at time of my annual physical my liver enzyme count was elevated. After a couple of months of tests and doctors’ appointments, none of which we definitive but everyone suspected CC, I had surgery at Oregon Health & Sciences University hospital. Dr. Billingsley removed the left bile duct which had a 2cc tumor in it and the entire left lobe of my liver. No chemo or radiation was recommended.
I’m doing fine, feeling good (of course, I never felt sick; they caught it so early), and 3 mo. post surgery my oncologist thought I was doing so well he didn’t want to do a CT scan until 6 months. He did blood tests and “no problem.”
It’s been pretty stressful, as you all know, added to the death of my husband in October ’08 after his 3-1/2 year battle with multiple myeloma.
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