Topic: Help! Need info on CC progression

I'm looking for any information!  I stumbled on this website and already it has been very helpful. 

My mother-in-law was diagnosed with CC after being misdiagnosed with a benign hemangioma.  She is 65 and was in good health.  By the time the diagnosis was corrected, her tumor was unresectable and quite large.  She has undergone three chemoembolization treatments.  For the most part, she is continuing her normal routine although she tires easily and has moderate to severe abdominal discomfort and back pain.  It seems to be worse after eating.  This has seriously diminished quality of life as she will have good mornings and AWFUL afternoon/evenings.  She has been undergoing the treatments back to back since March.  So far there have been no other complications (like jaundice). 

Her follow up after CT scan is soon and we are expecting the only treatment offer to be systemic chemo.  I have read the mixed reviews and opinions on the site about this step.  We discuss it often and we are at a loss right now as to what to do.  Without any good statistical support, she is not really open to trying it.  So far, her onc just says it MIGHT work so she should do it.  This is a decision we will have to make soon...

Anyway, my real question is about what we should expect in the coming months if she chooses to do nothing but be monitored.  So far, her bile duct is clear and her liver is functioning ok.  That is her biggest fear....that she is headed down a road and nobody can tell her what obstacles lie ahead.  Can anyone shed some light on how this progresses?  I know everyone is different but any info would help her deal.

Also, I'd like to know if her digestive discomfort and back pain are a result of the treatments or are they to be expected with CC?  She is reluctant to continue taking pain killers since it has been 4 weeks since her last treatment but is in a lot of pain.  Any suggestions/experiences dealing with similar problems?

Thanks so much for any information.  This is such a learning experience.  We are still trying to get a handle on what CC is and what it does to the body so we can support her through it.

Re: Help! Need info on CC progression

Welcome to the club no one wants to belong to.   I'm sorry your Mom and family needed to find this site but I'm pleased you're here for the information and support that's available.
We each respond differently to both treatment and living with the disease so I don't feel qualified to offer what path your mothers CC may take.  Reading the threads and others experiences will give you a good feel for what we all know at this point in time.   One thing in our favor is that CC is almost always a slow growing cancer.  This can allow some time for thoughtful decisions.  There are a number of threads on peoples decisions to use, or not use, various treatments including chemo.

Having said this I must add my oft repeated suggestion/plea that people always get a second opion regarding resection of the tumor.  Use the search tool at the top of this page and enter 'second opinion'.  You should get a number of hits.  In summary,  find a cancer center(s) and surgon with experience with CC.  Contact them by phone and send radiology reports and all imaging that you have to them for consideration.  It shouldn't be necessary to make long trips as the first step.   Get the reports and imaging and send them yourself.  This is usually much quicker then having the institution forward the records.
Best wishes and prayers for your Mom and family.

-Peter

Re: Help! Need info on CC progression

Peter wrote:

Having said this I must add my oft repeated suggestion/plea that people always get a second opion regarding resection of the tumor.  Use the search tool at the top of this page and enter 'second opinion'.  You should get a number of hits.  In summary,  find a cancer center(s) and surgon with experience with CC. 
-Peter

I'd like to affirm this advice...My husband had a liver tumor and was diagnosed as "unknown primary" and told by two medical oncologists that the only treatment was systemic chemo which would probably not do much.  The dr. (Dr. C) he chose as his main ono, my husband hit it off well with him...and this was his "second opinion" guy as the first one neither of us felt comfortable with.  But still, Dr. C also said that the tumor was inoperable.  Six months after this diagnosis, and a try out with a chemo that had no effect, Dr. C had my husband scanned and said the liver tumor was starting to grow (up til then it hadn't increased in size)  So THEN after all that time, Dr. C said, "Well, I'll set you up with an appointment with Dr. H who is a surgical oncologist and one of the most accomplished at liver surgery"  What?!  The thing I still don't understand is that Dr. H the surgeon is employed in the same oncologist group that Dr. C is the head of.  Why didn't he refer my husband to Dr.H months earlier.  So as it turned out, Dr. H told my husband, "I might not be able to get this tumor out, but looking at the location from all the scans, I think I can reach it and I'm willing to try."  It was a 4 1/2 hour surgery...and five months til my husband felt halfway normal again.  But he WAS a candidate for surgery even though the first two oncologists said no.  Dr.  H did not give false promises and said he would do the best he could but wouldn't know til he looked inside exactly what he could accomplish.  But he reviewed my husband's case carefully with a surgeon's eyes and ended up giving a different answer.  On top of that, my husband recently had the lung spot that also showed up on the original scans in 2006 treated through radiofrequency ablation.  The first onco we saw just laughed at the idea of RFA and said Tom was stage 4 and none of those "new procedures" would help.  Now my hub and I know that cancer could return in the liver area; we are not naive, but he is alive and moderately well because he got one more opinion.  I am still frustrated and a bit angry witing this, and it all happened nine months ago, but when the head physician oncologist doesn't refer a patient to his top surgeon with a surgical question, I just don't get it.  So please, all who read, investigate the options...talk to surgical, radiological, and medical oncologists.  Each has a different perspective because they work with different treatments.  Actually it was surgeon Dr. H who finally gave my husband a more precise diagnosis of cholangiocarcinoma....how strange that in that case knowing it was cc actually made us feel better because we knew what area the cancer started in and what symptoms to expect.  That "unknown primary" scared my husband so bad because not only did he have a terminal diagnosis but it seemed to be just floating in his body.  My hub was given 6 to 9 months and he's still here after 15 and is up and around the house...does the hosuework while I work.  He had taken early retirement and this isn't exactly what he'd planned, but is grateful for the last two doctors that they took a chance on him.

Re: Help! Need info on CC progression

Your mother-in-law may have the same problem I have regarding having pain and discomfort after eating.  I have neuroendocrine carcinoma of the liver and have several tumors, some quite large. The tumors cause the liver to enlarge and restrict the opening from the stomach to the small intestine, so food leaves the stomach very, very slowly.  You kind of feel as though your stomach is going to explode, and it does get worse as the day goes by.  If I eat supper too late, I usually can't go to sleep lying down.  I try to avoid a lot of raw vegetables and fruits (I know they are good for you nutritionally, but aren't worth the pain).  She may also have ascites (abdominal fluid retention)  I take 10 mg torsemide for this, however it works best when lying down.  Lasix doesn't work as well for ascites.