Topic: Mom diagnosed with CC

Hi - First time posting.  My mother. age 71, has just been diagnosed with intrahepatic CC.  She had been feeling sick with sinus trouble, tiredness and loss of appetite since right after Christmas.  Her internist finally got really concerned about three weeks ago when mom began to have unexplainable fevers.  She was sent for a CAT scan and there they found "spots" on her liver, a week later she was in for a biopsy and by the end of the week was told she has liver cancer.  By Tues. the following week (6/19) she had a appt. with an oncologist who confirmed it to be intrahepatic CC, with no apparant metastisis to other parts of her body.  The oncologist, as is typical I believe, has not been forthcoming with what is going on in my mother's body - the information provided to mom is about colon and pancreas cancers, nothing on CC.  Here is the hardest part for us - mom is in Stage 4 of the cancer and we only found this out by directly talking to the doctor about why mom was not referred for a second opinion and not directed to some clinical trial.  The oncologist also told us that most likely mom only has 6-12 months, with treatment maybe a little more - to my knowledge mom and dad are unaware  of this fact.  Today (6/26) as I write mom is starting chemo with Avastid and Gemzar (we think) which we believe is a last ditch effort for mom.  Everything we have read on CC indicates to us that there is nothing short of God intervening that will heal mom at his stage - there is no standard protocol for treatment and certainly no cure at this point as she is not a candidate for transplant.   *****I apologize for being a little vague about some of the details but my mother and father have always been quiet and secretive about their medical histories.  Therefore I am not completely aware of the chemo agents and other drugs being administered to my mom.*****

Can anyone offer advice.  Everything we see on this site so far seems to be from many who have caught the CC at an earlier stage and this therefore seems to give more options in terms of transplant and resection.  If anyone has experience with this CC at this stage, I would appreciate some feedback.  Also, we would like some advice from those who have gone before on how to talk to mom about the fact that, statistically speaking, her time on earth is most likely limited.  As I said the oncologist is painting a more rosy scenario for mom and dad - such a rosy picture that  they have told friends and family the treatment looks like it has promise.  I think this is extremely unfair witholding of information.  Should we try to insist that the oncologist be up front and tell mom the truth or let it play out?  I would want to know the truth, but I am not mom.  I know optimism is a great motivating factor but I don't want my mom igonorant about what is happening and what will happen to her as this cancer does what it will do.  Already it appears this CC is moving fast, in the last week alone mom's abdomen has begun to swell and is getting uncomfortable, her ankles are swelling, she has no appetite and she is beginning to get a little jaundiced.  I love my mom, I want her around for many years - my wife and I have 5 children, the only grandchildren for mom and dad - but it is hard to know what to do when it seems I have more knowledge about her cancer than she does. 

Thanks for a wonderful site.
Rob and Lewanne

Re: Mom diagnosed with CC

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 -

Re: Mom diagnosed with CC

Hi- this my first time posting.  My brother was just diagnosed with CC.  It has invaded his liver, with no metasis to other areas.  It is in stage 2.  They are starting chemo on 7/10/07.  He will be having chemo once a week with Gemzar for three weeks.  I would like to know what has been the experience of others.  He has no symptoms yet, except for being tired.  The family is really concerned about his diagnosis and prognosis.  Thanks for any insight you can give.  Are there questions we should ask of the doctors?

Re: Mom diagnosed with CC

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.

Take it to the Limit,One More Time! (Eagles)

Re: Mom diagnosed with CC

Thanks Jeffg for your input.  There was a discussion about a resection, but he is a heart patient and there has been some discussion about his health.  It has not affected both lobs.  I think it is in the right lobe, it started in the bile duct.  The tumor is approx 11 cm at this time.  How long have you had CC.  I am going to encourage him to get a second opinion.  The doctor seems hopeful of a full recovery, but I am feeling unsure of the prognosis.  Thanks again and I hope you are feeling better.  I pray for endurance for all of us.  Mssocialworker

Re: 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.

Re: Mom diagnosed with CC

So sorry about your Mom and so glad she was able to make it to your wedding.   Goals and determination and love make all the difference.   Dave and I have no children but are holding on to each other with hope and determination to beat CC.  Best to you and your husband.  PDerat