Topic: cholangiocarcinoma and no symptoms

My husband was diagnosed as having cholangiocarcinoma in Sept. 2006. He has an inoperable tumor on the liver and bile duct that is located near the portal vein. We have seen an oncologist who is monitoring him, having cat scans done every two months to look for significant changes. He has no symptoms at all. No pain, no jaundice, has a good appetite and no weight loss.
So far, we feel so blessed that this is the case, however, this seems so unusual. Our internist calls him a "miracle man". Does anyone else know of a situation like this where there are absolutely no symptoms for this long after diagnoses??!!

Re: cholangiocarcinoma and no symptoms

Hello - my dad is 64 and was diagnosed with CC in April 2006. He was diagnosed by cell brushing (no visible mass) and a posterior CAT scan showed mets to the lungs. He was jaundiced and he had a stent placed and shortly thereafter he got better. Since June he has had 2 CAT scans and 2 MRI's and there is still no visible mass and the lungs seem to be stable. He did have one complication in december (severe gastrointestinal infection) but it was a product of the chemo depressed immune system as opposed to tumor driven.

We are still very confused because we don't know what to expect. Overall he is quite well and has responded "ok" to Gemzar. I am grateful he has managed to do well so far but I permanently feel like we are in the calm before the storm.

While it's not quite a success we feel pretty blessed he has done well so far but are always uneasy. I also look for experiences similar to ours so I would be happy to learn from other with similar progressions.

thanks and best of luck to all.

Re: cholangiocarcinoma and no symptoms

My husand was diagnosed in June but there was a visible mass at that time and he had stents placed, unsuccessful attempt at resection etc. Since then he has had a lot of radiation and some chemo and now they can't see anything. It seems so strange because they can't say that it is gone but no one seems to know what to think. I am like you and just feel that we are in a calm before the next storm hits.I hope it stays away for ever but I doubt that it will. I guess we have to be thankful our loved ones are doing so well and hope that it can continue for a long time! Best wishes for continued good results!    Mary

Re: cholangiocarcinoma and no symptoms

I'm late to catching up on posts on this site, and just read your initial post, Seasheller.  I was diagnosed with gallbladder cancer in May, 2006.  They removed my gallbladder, but left in a cancerous bile duct, and did a Roux-n-Y bypass.  Because of an additional cancer spot on my duodenum, they staged me as Stage IV.  From May until January, I was asymptomatic, and receiving clean scans, like your husband.  My oncologist described my cancer as "pokey;" I guess the medical term is "indolent," but I was grateful for feeling good and not needing chemo.

In January, a scan revealed a recurrence in the spot where my gallbladder had been, a recurrence that was impinging on my liver, colon, and kidney.  So, I began chemo for the first time a little over three weeks ago.  I'm tolerating it well, and hope it's buying me more time.  If you want to read more of my story, I have a blog at www.dahlborg.blogspot.com called "Life Changing Cancer."

You'll read this a lot on this website; this disease is different for everyone.  The doctors talk averages, but the numbers of us with CC are too small for the statistics to be significant.  Enjoy this time you are having, and hope for the best.  I've been hearing lots more stories recently of folks making it to 2 years and beyond.

Good luck to you and your husband.  This is not an easy disease to face.

Re: cholangiocarcinoma and no symptoms

Lynne -- Just read your post and want to wish you well with your chemo treatments. Glad to hear you are tolerating them. Keep the faith and a good positive attitude. It helps so much. Our prayers and best wishes go out to each and every CC patient reading this.  ~~Jean

Re: cholangiocarcinoma and no symptoms

My husband has just been diagnosed with CC ( cat scans show largre liver masses and nowhere else)  we are just beginning to look at options, resection, chemo, radiation etc. We have been in limbo for 2 weeks waiting for diagnosis, and today for 1st time he has lost energy, feels down, and running a small fever. Since it is Sunday and we only saw our onc on Fri am not sure what to do? What are the symptoms that warrant taking him to the hospital, he has had non e until today and we are somewhat anxious.  Have put in a call to onc on call, but so far no answer.

Re: cholangiocarcinoma and no symptoms

Since CC is so different in everyone, I always hesitate to mention my experiences.  I was diagnosed with CC in March 2001.  I've had several surgical procedures, and have been on quite a few clinical chemo trials.

My understanding is that the discomfort I've had over the years is not caused by the cancer, which still seems contained in the liver (It came from the bile duct.), but is caused by the surgeries and chemo treatments over the years -- some which worked and some which did not work.

Thus, if they had not accidentally seen a mass on my liver during an ultra sound to see if I had gall stones (which I didn't have), the CC would not have been discovered.

My "almost" up to date experiences (more than you probably want to read) are at this link on this marvelous site:  http://www.cholangiocarcinoma.org/punbb … php?id=341

Good luck, never give up hope, and stay busy.

Jerry Daniels
Platteville, WI

Re: cholangiocarcinoma and no symptoms

Thank you Jerry D -you give me hope at a very scary time.

Re: cholangiocarcinoma and no symptoms

Hi Michele - I'm sure I speak for everyone here when I say that we're pulling for you and there's a lot of support, both with information and with empathy, on this site.

That said, I wanted to mention that my mother had hardly any symptoms but she did get a fever every evening around the same time. They said it was tumor fever, that occurs with certain kinds of cancer, and when she took Tylenol it went down (Tylenol is a bit rough on the liver so you can try another fever reducer if you don't want to take it that often). They told us that if the fever went over 101.5 and/or didn't respond to Tylenol we should call the doctor, but that never happened. There's always a chance that there's an infection in the bile ducts causing the fever (cholangitis), in which case you have to see a doctor ASAP and get some antibiotics. I don't mean to panic you! If it's a low fever and responds to drugs and some lukewarm/cool washcloths on the body and face, it's probably a tumor fever, and they tend to recur about the same time every day or every other day.

I hope that helps - I hope your doctor calls you back and lets you know if he thinks it's an infection or not, since my advice is just based on my own experience and I wouldn't want to steer you wrong!

Good luck!
- Joyce

Re: cholangiocarcinoma and no symptoms

Thank you Joyce -this is good info-am giving him Tylenol after talking to the doc.

Re: cholangiocarcinoma and no symptoms

Seasheller if you're still out there, just wanted to say my husband was told by three oncologists that his tumor was inoperable and chemo was the only possibility, then when he had no results from that, the oncologist sent him for a consultation with a surgeon who has a lot of liver experience, & the surgeon said it was operable, at least worth trying.  So Tom had it out in Jaunuary; gave up a part of his liver too, is finally starting to feel more normal and active.  So I know that everybody is different, but just wanted to say that even "inoperable" can be challenged, but not in every case.  I think with my husband, the tumor was in a precarious place and he found one surgeon willing to "chance it."  Also this dr. found lots of gallstones, which were apparently a source of pain and heartburn and those symptoms have almost disappeared.  Hubby just had follow up CT and PET scans, will get results soon.

The doctors do use that terminology, if nothing new shows they say the disease is "quiet" and if some new growth shows, they call it "hot spots" or "things are moving."  Tom diagnosed in June, had no treatment all summer, in Sept scans showed no change, so the onco said, "This disease is a slow mover" but then three months later, after chemo, the liver tumor had grown, almost doubled in size.  If Dr. H hadn't operated, Tom would be in bad shape by now, probably lose him in a few months.  The way things are now, he has a chance. 

My thoughts and good wishes to all of you who are stuck with this.  Patients and all the family and friends who are fighting the fight with CC.

Re: cholangiocarcinoma and no symptoms

Many thanks for the info our thoughts have been going in this direction too. Will be conferring with  liver surgeon very soon

Re: cholangiocarcinoma and no symptoms

Hi everyone! My husband is still hanging in there after the diagnoses of CC in early Sept. '06. He had been having Cat scans, but now the oncologist has changed to ordering MRI's because the contrast dye for the Cat scans could pose a problem on his kidneys. The MRI proved to be a much sharper image and fortunately that scan showed no changes in the size of the liver and bile duct tumor. Now we wait another two months for the next one. He still feels good and no symptoms, so the oncologist is going to continue monitoring it with no treatments necessary. We are blessed so far. I'm a firm believer now, that even though we know the tumor is there, if there is no pain, no jaundice, no weight loss and still a good appetite, leave everything alone until the cancer "shows its ugly face!!" We've gone through the emotional and devastating affects of just hearing the news of having the cancer. Now we are living and enjoying one day at a time and treating each day as a banquet as our doctor originally told us to do.
We continue to pray everyday and try to keep a positive attitude. Our prayers are for each and everyone of you who share this disease. God bless you all!!!    ~~  Jean (seasheller)

Re: cholangiocarcinoma and no symptoms

My Dad was just diagnosed with this type of cancer.  I am scared for him and don't know what to expect.  Information on the internet makes me more nervous.  The doctors are divided on what treatment  he should receive.  From what I can tell, I think he is in stage 3.  It is in both of his lobes or nodes, which makes me think he will get sicker twice as fast.  Absolutely any information would be dearly appreciated.  Thanks

Re: cholangiocarcinoma and no symptoms

Dear Father's Daughter (don't know your name!)
It's pretty hard to tell what you should do right now when doctors are trying to decide how to treat him. If and when they decide, if you and your family aren't comfortable with the decision, it's always a good idea to get a second or even third opinion. When my husband was diagnosed, I had the feeling that we should rush into treatment. Now I'm glad we didn't, being he still has no symptoms and feels well. The tumor is in the right lobe of the liver and into the bile duct, inoperable because it was too close to the portal vein. The tumor is 7 cm. After reading all the different cases in this CC site, I realize that everyone is different -- it is so hard to tell someone else what they should or shouldn't do. As I have said, we are not seeking chemo until the cancer "shows its ugly face!" For your sanity, if there are other sources where you can get a second opinion on treatment, it's comforting to do that, then you know what options are the best for your Dad!
God bless you in your decision making! Everyone that reads these messages knows just exactly what you are going through -- we've been there!!!
   ~~ Jean ~~ (Seasheller)