New to this disease and need help with what to expect
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Dear Lost…… I strongly echo the advice already given. My CC started in the left lobe of the liver only a couple centimeters smaller than you mentioned. I had my left lobe resected as well as my gall bladder. After the operation pathology reports showed my gall bladder had cancerous nodules as well. Although I have recurrence of the disease, I went 5 years by choice without any treatments of any kind. I had routine ct scans only. During this time my quality of life remained very high. At the end of five years I decided to try some chemo and kept trying until just a couple months ago. So I’ve tried chemo regimens for 3 years. I have also had 3-D conformal radiation on my liver (right lobe) and rib and tail bone. Another 4 1/2 months I will be at 9 years with this nasty disease. With the exception of a couple chemo regimens that I tried I don’t regret the path I took which was based on limited knowledge of this disease. I have tried other alternative treatments and will never know if they were of any help or not. I still meditate and visualize for peace of mind and body. Bottom line is … if it is only showing in the left lobe it should be resectable and extend life very much so. One word of caution is cc is considered (systemic) in the blood and can, as it did with me return and mets to just about anywhere it chooses. In my case the liver again and then the lungs and then the bones. Although the scans showed only the left lobe in your case there could be little seeds floating around not detectable. Get your second opinion! Doctor’s are human just like you and I and make decisions just like you and I. Those decisions are based on knowledge and experience of what and how we were taught/or trained. A very wide spectrum in-deed !!! Especially in the medical arena. Lost, Don’t give up hope and stay positive. Advocate for your Dad and Take it to the Limit. When I start feeling a little low I put in my CD of a group called the Eagles and play their song “Take It to The Limit ” one more time!
God bless and some prayers coming your way.
Jeff G.
P.S. I do think all the routine scans with iodine contrast helped keep things slowed down and my next adventure if possible will be radioactive Iodine. Got to find a doc willing to give it a whirl. They do it for thyroid cancers. We’ll see?Lost:
I know what you are going though. It is the worst feeling in your stomach and your heart breaks. My friend was diagnosed with CC back in June and had two doctors (one at UVA Hospital and one at Johns Hopkins) tell him his cancer was inoperable. They gave him 6 months to live without chemo and 1 year with chemo. I contacted Sloan Kettering in New York and got him an appointment within 3 days. I faxed his medical records in advance and they agreed to see him. We went into surgery knowing there was an only 50% chance of resection and thank God they were able to perform the surgery. He had the left lobe of his liver removed, his gall bladder and they reconstructed his bille duct using part of his small intestine. His situation was similar to your father’s in that it was only localized in the bile duct and had not mestatiszed to any other part of the body. He started chemo with Gemzar last Friday and so far has had no side effects.
As others posted, please get another opinion from a major hospital that is familiar with this dreadful disease. So many surgeons are now attempting surgery because it so increases your chances of long term survival.
You and your family are in my thoughts and prayers.
Nancy
Hi,
My name is Charlene and my husband John has cc too.Have you seen more than one Dr.? If all his tumrs are on the left lobe I would think they could do something. Have you researched the internet? That’s how I found out most of what I know about this cancer.
The Drs. gave my husband only 18 months and that was 33 months ago. Don’t listen to time lines they will only make you feel depressed and want to give up.
There are all types of treatments available… photo dynamic therapy, internal radiation, sir spheres, radio frequency ablation, alcohol ablation and many more.
Read some of the other posts on here and you will get a lot of info. The one thing I can tell you is don’t let the Drs. push you around. Make a list of all the possible treatments and ask your Dr. If he won’t explain or just poo poos you, get another Dr.
This is not anything to waste time on. Good luck and God bless you and your family.
Charlene
Lost, I urge you to seek more opinions, seek out Sloane Kettering, Anderson, Mayo, all the big cancer centers, including Cancer Treatment Center. I have a hard time understanding why this would be inoperable with a single tumor and no other involvement. I mean, this sounds like one of those rare times where they actually found it in an early stage, many of us, myself included, weren’t discovered until well into Stage IV. You might want to research how much experience your oncologists have with this type of cancer. Have they done any biopsies? what other CTs? Keep pushing them, it is your dad, do not give up!
My father is 58 and has just been daignosed with CC. He had abdominal discomfort in the beginnig and has had a ct of the chest and abdomen that found the 6.5 x 3.5 tumor in the left lobe of the liver but all other areas( lung, pancreas, spleen, colon, bowel, stomach, intestines) and all others I didn’t mention have been clean. The surgical oncolgist spoke with us yesterday and told us that it was inoperable and that chemo was pretty much our only alternative. He also said that with chemo he would have 1-5 years. Today we spoke with the medical oncologist and he said that with chemo he may have 8 months to 3 years. My dad is generally healthy, no other major health problems and absolutely no family history of cancer of any kind. We are in total shock and we are getting another opinion but I am terrified and need a little insight from anyone who can give it good or bad. Any help would be much appreciated!!!!
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