June 9, 2008 at 3:20 am #20274sarah-dMember
I know how scared you are, believe me I just found this site and i have found comfort already. I was 40 when i was dx. I itched for 3 weeks and was misdiagnoes 2x first with an allergic reaction second with hep a!! by the 3rd time I went to the emergency room I was so weak I could barely walk and I was more yellow than mustard. My billi was over 13 (It should be 1) and they had to but an emergency stent in at 3am to drain the bile. I was there over two weeks and was told surgery was too dangerous and I probably had about 6 months. I thought that cant be I have a 15y/o and a 10y/o that need their mom. My gi doc god bless them didn’t except the surgeon dx and sent me to Jefferson in Phila. MY wonderful surgeons resected and reconnedt my common bile duct and removed my gallbladder. I did radation and chemo at the same time.
That was in 2005 I still get scans and b/w every 6 months and am still scared to death everytime. my famly has no history of cancer and ive never even had heartburn before this, i also very rarely drink and never smoked.
There is no understanding cancer. I make a memory every day with my husband and daughters. I had so many regrets and wish i hads when I was in the hosp that when i was feeling better i decided NO REGRETs and do my best to live that way. But I still have moments at odd times where I can just burst out crying and get overwelmed with the thougt of not being here for my girls. It is scarry and you have a right to be scared just don’t let it control your life. The 1st person to email me from this site was jeff and he has a great point of view and a comforting way of saying things.
Read what people write and chat with them, post questions if you have them i know i will. there is comfort in this place.
I will keep you and yours in my prayers as I will with everyone I have read about here. You can email or post me anytime. I do understand your feelings and will help in anyway I can. SarahJune 9, 2008 at 2:36 am #20273
Thank you all for the good wishes. I am trying to stay positive and think happy thoughts. I think that once I return to work and stay focused on something else my depression should get better too. I take something to sleep at night, which helps a lot.
I never realized the number of people that have been affected by this terrible disease. In fact, I don’t think I ever heard of cc before I was diagnosed with it. Yes, I did get “good news” but I don’t like the uncertainty of not knowing…..then again what IS certain in this life? I guess what I want to know is ….do people actually live for many years after having been “cured” or is remission just a temporary phase and I should “expect” to get this back again? I mean, I have heard of patients having had breast cancer 30 years ago and they are still cancer free. Does this exist for cc patients or is the level of uncertainty so great that medical science does not have an answer for me?
Can you tell……I kept myself busy all weekend and now since its basically time for bed….I am feeling anxious again!!!June 6, 2008 at 4:07 pm #20272scragotsMember
Thank you all for your good thoughts and wishes. There is honestly just a little bit of relief to hear that I might only have a hernia. I would take that over CC anyday! Never having had one, I didn’t really know what the symptoms were. The pain I am having is similar to a constant gallbladder attack (which, of course, I CAN’T be having!) and I am glad to know there might be a nice simple solution!
Jean, you are so welcome!!! When I read your story, I started reliving the whole thing as it was fairly similar. You can read my looooong story anytime you feel like it, right here on this site. But I do remember (and still have) the days of worry and depression that come with an uncertain future. In fact, I had to chuckle, I was sooo depressed in the weeks after my surgery, that everyone was getting really tired of my crying, so they made the doctor get me a script for Loritab!!! I had never had it before, and I gotta say, it did wonders! I was only on it for a month, but it really helped me deal with everything.
Now, I did not tell you that as in “You need to get a prescription, girl!!!”, I just wanted to make you smile. You have a strength you didn’t even know about until the last few months, and it will pull you thru!
I will let everyone know what I learn from the GI doc…IN TWO WEEKS. It’ll seem like forever!
Hang in there…think those happy thoughts!!!
SueJune 6, 2008 at 3:25 pm #20271billParticipant
Your situation sounds very similar to my wife’s. She was told to come back to Mayo Clinic every three months for a CT scan also and the waiting and wondering was very nerve wracking. We both met with a counselor who saw cancer patients and that was very helpful. We also read “Dancing in Limbo” which seemed to address many of the concerns we had. And of course, she continued to get support and encouragement from her local oncologist, whom she admired and trusted.
It seems like you have reason for optimism based on the results of your surgery but I think I can understand why you are still concerned. Would it help to see another cholangiocarcinoma expert to confirm that you are doing everything you can to treat this and at least get another opinion?
I believe another reason for optimism is the ongoing discovery of new or alternative treatment options for this condition, even if it does return. I hope for the best for you and your family.
BillJune 6, 2008 at 2:26 pm #20270jeffgMember
Sue… You know it is common to develope a hernia after the type of surgery you had. When I had resction of liver and gallbladder, I had a big ole hernia as well and you know what the first thing I thought was happening without me saying . My eyes where watered with emotional worry. Half day, well 3/4 day visit and surgical repair with mesh as in had been developing for a while and was a little larger than normal. Bless Ya Girl! hope all goes well at your Gi appointment.
Jeff G.June 6, 2008 at 1:53 pm #20269
I cannot tell you in words how much your message has meant to me. Thank you so much for your response, that is what I was looking for…..someone that had a similar situation to share.
It has only been 5 weeks so I think that some of my anxiety is normal. I try to stay positive but its difficult at times.
My dad had a hernia below his rib cage and had similar symptoms to yours. Those are easily repairable compared to what you and I have already been through. You try to stay positive as well and you will be just fine. Let me know what the doctor says and GOD BLESS YOU for your message. One day at a time……..
Thanks a million!
JeanJune 6, 2008 at 1:27 am #20268scragotsMember
I don’t post very often anymore, but I read this board every day. I was also lucky and was able to have a resection in Jan. 2007. They removed my right lobe and my gallbladder with clear margins. I did not have chemo or radiation after, as my doctor said that she got all of the tumor. I am just now at CT scans at 6 months instead of 3. So far, all of my scans have been clear. I have probably felt better since healing from surgery than I had for a few years before the surgery. My doctor said she shoots for two years with no recurrence. Only 6 months to go.
Now, do I worry? EVERYDAY. In fact, I am experiencing pain below my sternum and between my breasts. I have called and have an appointment with a GI in two weeks. I am in a panic. Is the cancer back? Is it just reflux? I have even wondered if I have a hernia as I get a bulge below my sternum when I cough. But, I have faith that it’s just one more bump in the road. And I can deal with it. I have to.
You have been given an incredible chance at life. And as lucky as you and I have been, it is still so difficult to live with the unknown. It will get easier, trust me. You need to concentrate on healing and getting stronger. Try not to dwell on “the future” any more than you have to, and move forward. Enjoy every day that you have been blessed with.
And stay on this board. These people are fantastic. Listen to what they have to say. Keep in close contact with your doctor and NEVER hesitate to call him/her if you are worried or concerned. Any doctor worth their salt will understand and will try to help you in any way possible.
Think good thoughts!
SueJune 5, 2008 at 9:41 pm #20267marionsModerator
Under “Patient Support” scroll down. He is wonderful.
MarionsJune 5, 2008 at 9:28 pm #20266
Who is Dr Giles?June 5, 2008 at 5:13 pm #20265marionsModerator
Jean…first and foremostJune 5, 2008 at 4:49 pm #20264jeffgMember
Jean… When I had my resection of half of my liver I was told there was a hemegioma on the other lobe and not to worry. Well that heme was cancer one year later and mets to my lungs. Take heed and listen to Barbara and go fish! I would want to be more prepared than not. If it is CC it has a tendency to pop up on the unresected part of the liver. Also when they say regenerate, that lobe does not grow back only the remaining liver regenerates the blood vessels and volume to function as a whole liver. I would also enure get ct scans every three months for at least a year to make sure nothing does recur. I’m sorry if I raised your anxiety level ,but you need to know more opinions are better than one every time. CC is unpredictable and you should be on watch so appropriate action can be taken. CC is a systemic disease and if any free radicals went off through your system you could have a recurrence. Now I’m not saying you will. Some people have had resection and have done just great! I’m sorry you have to go through this mental anguish of uncertainy. Trust your gut instincts. My surgeon considers 5 years out with no reocurrence no longer to worry. My Oncologist says 2 years out no problem. Be Happy and Live Happy Jean you can’t lets this DX and surgery eat you up. Just take some precuations.
Jeff G.June 5, 2008 at 4:28 pm #20263
No, the surgeon said that with the resection I did not need a transplant and that the cancer was now gone. I sure hope he is right.
Thank you for the information. I will certainly give them a call
Take care and God bless!June 5, 2008 at 4:24 pm #20262bbfransonParticipant
So scary. My prayers are with you.
So, with the transplant surgeon, did he also say you were a candidate for transplant? Is the university there involved in any experimental protocols for cc? If not, I think I might would do some fishing. Everything I have read has given the highest survival rate with early detection and transplant. It sounds like you might would qualify.
The protocol Scott, age 42, went through had chemo/radiation/transplant even though they couldn’t find a tumor; there were only cancer cells. He is recovering from the transplant, but still carries the buried anxieties of it recurring.
The unknown is terrifying. I think you should go back to the transplant surgeon; and research some different facilities. You can get a copy of the University of Utah cholangiocarcinoma protocol by calling Crystal at 801.585.2708. Dr Schwartz is our transplant surgeon. He is looking for more qualifying participants for his research study, and would probably look at your file.
God Bless, good luck, hang in there, and love those babies,
BrendaJune 5, 2008 at 2:40 pm #1271
Hi. My name is Jean and I was recently diagnosed with cc. The doctors told me I had a small hemangioma on my liver 2 years ago and there was nothing to worry about…..many people have them. A few months ago, I noticed a sight discomfort under my right rib cage. I went back to my local doctor and was told that the hemangioma had grown from 3 cm to 8 cm. They gave me 3 CT exams, an ultrasound and did not want to do a biopsy because hemangiomas are clusters of blood and they were afraid it would burst. They wanted me to have an MRI. I am very clostrophobic so I took my test results from the local hospital and went to the university hospital in Wisconsin, where I saw a liver specialist. He viewed my scans and said he would be “very surprised if it was cancer” and even thought I had some sort of parasite from Mexico…..that test came back negative, so he scheduled a CT. During the CT, the tech told me she sees cancer all day every day and that this was not cancer. I was relieved. Two weeks later I got a call that they wanted to biopsy the mass. Ok, no big deal, right? Even the biopsy doctor stated outright that he did not feel it was cancer. Well a week or so later I got the news….cancer. They told me over the phone that the mass was so huge they did not feel surgery was an option….possibly a liver transplant. I was devastated. I am 43, non smoker, occasional drinker with small kids at home and NO family history of any type of cancer!
A couple days later the lead surgeon from the transplant team at university hospital called me to tell me the team had reviewed my file and I was indeed a candidate for the surgery, which was scheduled for 3 days later. After 4 hours under the knife, the pathology report came back that the cancer was contained to the liver, with no lymphatic involvement, no vascular tissue involvement, nothing. The tumor was completely removed with a 1 cm border around it as well as 70% of my liver, which I am told should be regenerated by now (5 weeks later). I am supposed to feel “lucky” as I do not have to have chemo or radiation, just come back every 3 months for CT exams for follow up….however, I am terrified. I know nothing about this cancer or any other for that matter. I find myself very depressed and constantly wondering ….did they really get it all….how long do I have…will it come back…..etc.
In reading some of the other stories posted here , I do realize that things could be worse, but I am really scared. Has anyone else had this type of news?……
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