Mom diagnosed with CC

My mom was diagnosed in August 2005 as having Cholangiocarcinoma, at the time she was 65. I first noticed symptoms in April 2005 in that she looked slightly jaundiced. After a round with our local GP and an emergency CAT scan they found, as they put it, “a mass”. What that meant, no one could or would tell us. We went to see a liver specialist and were told we were scheduled for an MRI…long story short, after about 2 months of testing and ERCPs she was diagnosed as having PSC (primary schlerocing cholangitis) which is a disease causing inflamation of the bile ducts. We weren’t told until early August that a brushing from an ERCP came back positive for cancer. At this point, things just started to go downhill…We didn’t elect to do any chemo at this point because we were told by the former head of the Mayo clinic in Rochester, MN that none worked on this type of cancer. We did do TOMA radiation which slowed the growth of the one large tumor that was wrapped around the hepatic vein. My mother was the most positive person throughout this ordeal. She vowed and declared she was going to be one of the miracles and beat this disease. Throughout the next 15 months she never had one negative thing to say to anyone. If she didn’t feel well she would say she was just a little tired, she never let on that is was getting worse.
For me this was very hard, I am only 25, as you can guess my mother was 41 when she had me as they didn’t think they could have children and then got a surprise.
Christmas 2005 came around and my boyfriend proposed. We were planning a 2007 wedding but were persuaded by the doctors to have it earlier–Oct. 2006.
By giving my mom something to look forward to she made it through the wedding. In November 2006 she started having a problem with fluid build up in the abdomen. It would look like she was pregnant she was so swollen and uncomfortable. This, we found out later, is what starts to happen as the body begins to loose the battle. I will spare you the details of what happened later, but after a two week stay in the hospital we took her home in an ambulance. She lasted about an hour once we got home.
She was able to hold for so many months because she had so much will power and would not let the doctors tell her she was going to die. She knew she was going to make it and believed it until the last day.
I can’t tell you what to tell your mom, but as long as she has hope, she will hold on. One day, maybe through this organization we will find a cure. I would do anything I could to keep another family from going through what we did. WE WILL FIND A CURE.

MSSocialWorker…. I’m sorry to hear about your brother. You said stage two? Was any discussion of resection due to no mets? I had resection of entire left lobe and gallbladder in the beginning due to no identifiable mets elsewhere. Does his CC involve both lobes? Also maybe discussion of resecting gallbladder at the same time. I only say this as it sounds so familiar on how I started out and have always said if I were wiser back then, I would have done chemo either a little prior then a mop up after surgery. I just feel strong about this post for obvious reasons and would hate to see your brother be worn out with chemo if a resection is possible for a better prognosis. I know it’s a devastating decision but by all means get a second opinion and explore your options. Where is your Brother going to be treated? MS SW, Please don’t get me wrong, I am not a doctor just someone who has been there and I just want to make sure your Brother gets off on the right foot. If What Iv’e read in your post is what is going on I wouldn’t hesitate in a heartbeat for the second opinion. You asked for input and I’m giving mine. Doulbe take on this one is my personal feelings. I can only say this to what was written in your post, not to give any false hopes although I always feel there is hope. God Bless You both!
Jeff G.

Dear Rob and Lewanne,
I feel so terrible for you – and your family. I know how difficult this is for you. I’m very surprised that the oncologist is sugar-coating the information he’s giving – that’s unethical and I didn’t think doctors did that anymore. Was anyone else there when the doctor said these things? I’m just asking because I know sometimes people (especially parents) try to hide the real facts from their families, so perhaps your parents are aware of the prognosis but are trying to protect everyone else from that knowledge? Or maybe they just heard what they wanted to hear and they’re in denial. If the doctor DID misrepresent things, that makes it very tough on you and I believe he should be up front with your mother and let her know EXACTLY what the situation is. It shouldn’t be up to YOU to have that painful task. My mother was given a brutal and blunt assessment when she was diagnosed — they told her she’d live maybe a year and she only lived for less than 2 months after — and my mother was very depressed but it was better that she knew. Even then, she didn’t make all her plans and get things cleared up before she died because she kept thinking she had more time (we all did) and of course we were all secretly hoping for a miracle. So, a little bit of denial is helpful and even necessary to keep your sanity, but people should be told that they may not have much time.

My mother was also stage 4 and to my understanding, Stage 4 always means there are metastases to distant parts of the body – lungs, bone, etc. So I would ask about that, too. Your mother’s symptoms are alarming to me because they are very similar to my mother’s during the last two weeks of her life, so I would urge you to hurry and prepare her for the worst. I know that sounds terrible, and I”m not saying that she won’t hang on for a few more months or even a year, but the course of this disease is very unpredictable and can become aggressive very quickly. The swelling is very worrisome, especially if it’s not getting better with water pills.

I wish you the very best and I hope you get that miracle that I was counting on for my mother that never showed up. Everyone here has a lot of information that you can’t get anywhere else since doctors don’t go into too much detail and it’s a pretty rare disease. Ask any question and someone on this forum will try to steer you in the right direction.

Please remember that my mother’s experience may be vastly different from yours, and don’t lose heart.

Take care –
Joyce