Topic: confused about lack of evidence of cc

Hi,
my brother's Cleve Clinic doctor is consistently telling us that CC doesn't grow in a mass, there isn't a mass in my brother, and that the fact that the 2 biopsies and all the marker tests (CEA & CA19-9) are negative doesn't mean anything and that those tests very rarely help in diagnosis.  Looking through the boards here, that just doesn't seem to make sense.  Doctor has said that he is giving us this CC diagnosis because they've ruled out everything else.  We don't really doubt him, but....
is this lack of evidence common?

thanks,

candy

Re: confused about lack of evidence of cc

Weird - I know that I have tumor growing around my bile ducts.  I thought that cc always had tumors.  Maybe I'm wrong.  Has your brother had a CT scan or MRI to confirm diagnosis?

Re: confused about lack of evidence of cc

I also don't think that cc can be diagnosed by ruling everything else out. Not sure 100% but I'd certainly get another opinion- You're close to pittsburgh try there I think there's a Dr. Yeo there.

Re: confused about lack of evidence of cc

thanks for the responses...actually met with a different doctor today who gave us more info and a diff spin.  said there's diff forms of cc, some grow masses and some don't, just have thickening of ducts.  He looked at everything and said he wouldn't positively rule out other causes at this point, ordered a chest ct...said my brother was probably looking at surgery for whatever this is but was much more positive and definitely a more aggressive doctor.  Really liked him and his staff was much more informative and communicative.  Other doctor was good but conservative and not very positive about surgical cases and CC.

Re: confused about lack of evidence of cc

Scott doesn't have any masses and his cancer markers were also 0. His hepatologist did a brushing during his last ercp that came back positive for cancer cells. Since he also has primary sclerosing cholangitis, our understanding was that the only significant chance for survival was chemo, radiation and a transplant. There are only a few hospitals doing this for CCa, so it would be worth finding one and talking to the drs there. We are at the University of Utah. Our hepatologist is William Hutson. You can reach his staff at 801.581.2121.

I would definitely take the implications of CCa very seriously, but the treatment is not something you want to take on a just in case, because we can basis. I highly recommend the 2nd, 3rd and maybe 4th opinions of dr's who have dealt with CCa. It's not something to play with and you don't have the energy to listen to drs with only half a clue about it.

God bless,

Brenda

Re: confused about lack of evidence of cc

Candy,
I would not consider taking any measures in re: treatment until other opinions have been gathered.  As Brenda had mentioned, a third or possible fourth opinion is in order.  I would gather all records CT scans, blood tests, tumor markers tests, physician's comments, etc. and forward it to other specialists familiar with CC. 
Wishing for the best
Marions

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: confused about lack of evidence of cc

Candy,
    Why did they put drains in if there is no mass? Were the bile ducts obstructed? IS there dilation of the ducts? I really don't understand how this works sometimes.My husbands first scan just showed dilation but he was almost completely obstructed. THe MRIs and Pet Scan showed the tumor. Can they see anything when they do the ERCPs? I would go to Pittsburgh UPMC if at all possible before any surgery is done. Good luck and take care.  Mary

Re: confused about lack of evidence of cc

thanks for the posts...the bile ducts were completely blocked, and they did see dilation of the ducts on the scans...brushings from ERCP and the PTC procedure, and the tissue biopsy were all negative though..this new doctor is very familiar with CC, is the director of oncological surgery for GI... sees about 1 new case of CC every week.  He's ordered another scan and also referral for a liver specialist to really check out the liver before we do anything else. 
Brenda, was the PSC diagnosed before CC?  if so, how and was there treatment for that?  Doctor mentioned that this could be PSC..
thanks!
candy

Re: confused about lack of evidence of cc

Scott has had psc for about 15 years. It is the leading predisposing factor for CCa. It is treated with ursodiol, a synthetic bile that comes in pills. They suspect that ursodiol might slow down the psc, but there is no really effective treatment. Persons with psc usually go into liver failure over many years and then require a transplant. PSC is not an incredibly great diagnoses. PSC is usually less fatal than CCa, but I don't consider it to be any more pleasant..... especially if he has a biliary drain.

So, that was just the biggest downer of a post I have ever given.

The upside of this is that transplant cures psc. If you catch it early enough, transplant with chemo/radiation is also a cure for CCa. (Transplant by itself for CCa is only successful 20% of the time. Chemo/radiation/hell increases the odds to 80%) I'm hoping that your dr is aware of this information and can help him either way.

God Bless,
Brenda