1 (edited by crissie Thu, 01 May 2014 07:24:29)

Topic: How Were You Diagnosed?

I am just curious about this cancer.  How were those of you with cc diagnosed?  Was it via liver bloodwork, biopsy, etc?  What caused you to go to the doctor prior to your diagnosis?

My dad went to the doctor due to the terrible itching he had and dark urine.  It was then he had liver enzymes done and it was diagnosed by a process of elimination...no biopsy.

2 (edited by LisaS Thu, 01 May 2014 13:19:12)

Re: How Were You Diagnosed?

I came back from a 100k charity bike ride in Nashville thinking I was in the best shape of my life. Went to a wedding the following weekend. My college roommate was there. She looked at me and said my eyes were yellow, which I hadn't even noticed. So, I called my internist that Monday and got in to see her. She agreed my eyes were yellow and sent me for blood work and to see if I could get in for a ct scan that day, which I did. The ct showed a mass of some sort and my blood work showed high bilirubin and other elevated liver numbers. My doctor called me at home that night (I really thought I'd just gotten some bad oysters or something when we were on vacation a month before). She got me in for every alphabet test under the sun that week - MRI, colonoscopy (I'd had a routine screening colonoscopy 6 months earlier that didn't show anything), endoscopy and ERCP. While they were not able to get a tissue sample to biopsy because of where my tumor was located, I knew the diagnosis - classic klatskin tumor - within 48 hours and my internist and the gastroenterologist pulled strings to get me in with my oncologist that week, as they both thought he was the best with this cancer.

In hindsight, I complained about the hotel food in Nashville, but I don't think it really was the food. I think it was the beginning of my symptoms and it turned out within a few weeks of diagnosis I had a major blockage abdominally that required a gastrojejunostomy surgery to re-route around the blockage.  I was itching, but had no idea what that meant. During the week I was undergoing all those tests, as my bilirubin number got crazy, I got really yellow and had the dark urine and light stools.

That's probably way more than you wanted to know. It frustrates me no end there isn't some screening or signs until its late in the game.

How are you doing?  You are in that just awful period of time where your world has stopped spinning, but the world around you goes on. It's surreal. I know.

Impatient patient.

Re: How Were You Diagnosed?

Unfortunately I was misdiagnosed originally in 2009 when they found a small lesion and dx me with a liver hemangioma (they scanned me every 6 months to follow up on this and it continued to grow and grow and I was told not to worry)  Last July I went into the ER for pain thinking the hemangioma might have burst (as I was told this could be a possibility).   The ER doc told me he really didn't think this was a hemanioma and to follow up with my GI. Next thing I knew my ca19 9 was slightly elevated, my alk phos was slightly elevated and was immediately referred up North to OHSU.  Things moved pretty quickly from there.  More scans which has shown significant growth.  Two biopsies on the liver.  First one came back normal, non malignant.  Second I was diagnosed with cholangio.  The only symptom I have had throughout all of this is some abdominal pain.

Hope, love, strength...2013 and for the years to come, Porter.

Re: How Were You Diagnosed?

Well, we went up North in Arizona for a weekend to cool down in July. Came back down to Phoenix and Teddy started itching. First thing you think of is, I bet he developed an allergy to tomato (God forbid for a Sicilian) or it could be detergent or an insect bite. He itched for over a week and we were getting ready to leave for 2 weeks in Milwaukee. I told him just to run in and see his GP before we left and to get a blood test. We got to my son's on a Friday and the itching got worse so my daughter-in-law made an appt. with their family Doc for Monday morning. In the meantime the day we arrived we got a call from the GP that his Bili was a little high and to see her when we got home. Did not know it was a 5 until we returned 3 months later. Yes our 2 weeks turned in to 3 months. On Monday morn the GP said you are so Jaundiced to which I said, " T you know I don't like you in yellow", little did we know what was coming. In that week he had Scans and LABS and about 8 days later he went in for a Whipple which was aborted after 4 hours as the Surgeon could not cut the head of the Pancreas as the Pancreas was destroyed by leakage of some of the contrast they used in one of the tests. Went back to son's and waited for Pancreas to heal and in that time he developed a double E Coli infection and that almost took him. Ended up in the hospital for 10 days and the Surgeon said we have to go in I believe the Pancreas will be ok now. Had the real deal Whipple and finally the end of October we flew back to Phoenix but didn't arrive until his 2 external tubes blew out on the plane! I had the flight attendant call for an ambulance. When they brought him to the hospital Robin ran up to him and cried oh, Teddy I am so glad you are home. T propped himself on one arm and said, "Yeah, did you ever see the movie Airplane?" We waited and waited and I called his Surgeon in Milwaukee and I said I had bags with us and could just slap one over his hole from the tube. The surgeon said DO IT and we took him home and slapped a bag on him! Sorry for the length here but sometimes ya just can't shorten it!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: How Were You Diagnosed?

Abdominal pain, especially at night, in the upper right abdomen was the symptom for my sisters Intrahepatic CC. She has never had jaundice (or the other symptoms of high bilirubin). Night sweats were another symptom but she attributed this to menopause (she was almost 50 at diagnosis).

Willow

Re: How Were You Diagnosed?

Found during a CT my doctor ordered for diarrhea lasting most of a year after having C-Diff colon infection .....and C-Diff was already killed off.   Initially, had gone to the doctor because of acute pneumonia, but a side conversation led to the CT scan order.  Incidentally, they caught part of my lungs in the CT of the pelvis and saw the pneumonia, plus a bunch of tiny nodules that got them worried.  They have been explained away as infectious in nature in follow up CTs. 

Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: How Were You Diagnosed?

My husband started with intense itching. His quack of a doctor told him to drink more water and prescribed a lotion which was $75.00 and not covered by insurance. I sent him back to his doctor and told him to tell the doctor to do blood work. The labs came back and the alkaline phosphatase was through the roof. We spent a couple of months going for various diagnostic tests (CT scan, ultrasound, etc). Finally they thought it was a stone and he needed gall bladder surgery. When we met with the surgeon he told us he couldn't help and that he needed to see a GI for an ERCP. Before we got into see the GI, he ended up in ER with jaundice, pain and confusion. He spent 2 weeks in 2 different hospitals.  He almost died. He doesn't  remember much of those 2 weeks. They put in a stent and he has an external biliary drain. I would say the drain saved his life. They tried to do brush biopsies but none came back positive. The oncologist told us this is common and he has all of the symptoms of cholangiocarcinoma. We had a few more trips to the ER due to pain. He was not a surgical  candidate. He watched  his dad die from pancreatic cancer and chose to not do any treatment. He has been at home followed by hospice for 14 months now. He has good days and bad days. But, because of hospice, he really doesn't have pain. He is now progreesing and has some fluid in his lungs and not much of an appetite.  But, I don't  think he regrets his decision to chose no treatment. They told him in late 2012 that he probably had 3-6 months. To date, he has lasted 17 months since diagnosis.

Re: How Were You Diagnosed?

Meant to say he is progressing

Re: How Were You Diagnosed?

I had a typical gallbladder attack. They found the tumor during the ultrasound.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: How Were You Diagnosed?

Mark had what I was sure was gallbladder attacks, right upper abdominal pain that came and went along with some burping. His last attack was a year ago. PCP worked him up for gallbladder and found nothing. We went to the ER for left upper back pain that we thought was a kidney stone and the CT scan showed a mass at the junction of the bile ducts. We were still working that up when he turned yellow (glow in the dark highlighter yellow). Another ER trip and found bilirubin of 8 and an elevated Ca19-9.
We opted not to do an ERCP since he was eligible for surgery so did not know the definitive diagnosis until three days after his June 4th surgery when the biopsy results came back.
We honestly look back and see the "gall bladder attacks" back at least six years so I suspect it has been there at least that long. As his PCP went back through the labs that he had drawn every 3 months and we see a gradual trend of his liver functions elevating but nothing worrisome. The last set were drawn three weeks before he turned yellow and they were barely abnormal.
This is sneaky stuff.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

11 (edited by JScott Thu, 01 May 2014 13:12:11)

Re: How Were You Diagnosed?

My wife had slightly elevated liver function numbers.  rechecked the tests every month for a couple of months with the numbers getting worse.  Got an ultrasound where the GI doc misread the ultrasound report which cost us a month. 

Finally after being unable to find any other cause, a CT scan was ordered which identified very suspicious lesions.  A biopsy then confirmed intrahepatic CC.  Initial suspicious blood work was Nov. 2012.  Diagnosis of ICC was April 2013.

Jason

Re: How Were You Diagnosed?

I had a sore spot on the right upper side of my stomach which I discussed with the doctor during my annual physical examination in April, 2013 - No real pain or other issues involved so we completed the physical and thought no more about it - Additionally, the usual blood work was done and showed nothing unusual - Three months later I accidentally hit the spot with a golf club and suddenly realized the sore spot had developed into a fairly large, pronounced lump - Called the doctor who examined the lump the same day, immediately scheduled a CT scan which showed the tumor intertwined around my liver, and then immediately scheduled a biopsy which then resulted in the Stage IV unresectable Cholangiocarcinoma diagnosis - Diagnosis was made in August, 2013 and Gems/Cys chemotherapy (once a week for two weeks and third week off) was begun shortly thereafter and has continued on that schedule right through the present -  Two additional CT's (another CT is scheduled next Monday) have shown the tumor to be stable thus far and it is our plan to continue with the Chemo for the forseeable future -
I am 81 years old and have been as healthy as a horse my whole life - I have had no other symptoms, have had absolutely no Cholangio symptoms at any time, have had no side effects (with the exception of some occasional minor fatigue) from the chemo have had the wonderful care of my wife, five children and eight grandchildren -  Although I was obviously not thrilled with the Cholangio diagnosis it has brought home to our family the importance of counting our blessings and appreciating each other on a daily basis and for that I am truly grateful -

Re: How Were You Diagnosed?

So basically there are no "set" symptoms.  Even drawing liver enzymes doesn't seem to be conclusive as some have normal levels.

I am so paranoid about this since my dad just passed from it.  I know it is a maybe maybe not but I am an analytical mind that can't deal with that.

Re: How Were You Diagnosed?

Crissie...I forgot to say that my liver enzymes were right smack in the middle of normal...as they always have been.....and I get the blood drawn and tested at least twice a year for other reasons.  For intrahepatic versions of CC, we rarely have any symptoms at all...not even the jaundice /itching...until it is usually late stage 4.  Even my C19-9 test after the tumor was found was right in the middle of normal range...so we can't really use that to show if my cancer is returning.  My tumor grew part of a cm between when it was found and a month later. If I had any symptom at all, it was that I would get full faster when I ate, in the month and a half before I was diagnosed..but I had been dieting for a year and a half, so that wasn't suspicious.  I also did notice my urine sometimes was pretty dark in the month before I was diagnosed..and it gave me pause to wonder, but I wasn't drinking enough either, so when I increased my liquid intake, that went back to normal.  One other sign....was that I had a spontaneous diabetic low sugar event (43...very low...took 3 hours to get it to go up to 100 and stay there).  I later discovered that that is a sign of liver cancer...esp in diabetics.  My blood sugar stayed way down....almost normal until I had surgery to remove the cancer....and then it started creeping back up as I recovered....behaving more "normally diabetic."  Anyway...thought I should add these "signs", which weren't much for signs at all.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: How Were You Diagnosed?

Crissie, unfortunately all we know for sure about CC is that we know not much. Everyone is truly different in how they get CC, how their treatment goes and how they were diagnosed. I know it doesn't feel like it but we are making some strides and are beginning to be noticed now in many ways. When we started this site 8 years ago all we had was each other. Now we have some fabulous Doctors very interested in us, some great research is going on and in the end we WILL kill this Monster. We ARE being noticed!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: How Were You Diagnosed?

I went from 173 pounds to 153 pounds in about three months.  I attributed that to working night shifts, 8-12 hours a day, 5-7 days a week.  (PCP had run routine tests about 7 months before which showed alk-phos about 700 but he didn't press the issue.  Thought I was probably taking too much Motrin.)  Billi was ok but I was jaundiced with dark urine.  Some abdominal pain and shoulder pain.  Went back to PCP with weight loss and he sent me for colonoscopy (which was negative) and a CT scan.  Confirmed with biopsy.  The rest, as they say, is history.

My best advice for coping with this is that you must keep a positive attitude about life.  This means that the people you keep around you must also be positive.  It also means that you may be forced to put space between yourself and Eeyores who will drag you down if you let them.  Kind of like the old saying:  "Whether you think you can or you think you can't, you are right." - Henry Ford

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: How Were You Diagnosed?

Crissie,

I think the more we know about this disease the less it makes any sense.  My husbands liver enzymes were always normal until near the end.  He was what we thought was health except that he was starting to tire more easily, and started to have pain in the upper right abdomen.  After 5 trips to the ER, several misdiagnosis  and all test imaginable he was definitively diagnosed as having interhepatic CC  contained to the bile ducts only 10 days before he passed away.

As Lainy put it,  all we know for sure is that we don't know much, or enough.   Hoping that this keep changing and that in the future we will have more answers and better ways of early detection.

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: How Were You Diagnosed?

Crissie,

Thanks for this thread. I go over what may have been symptoms all the time in my mind.

Some itching in the spring, but not so extreme it caused concern. Then it went away on its own.

At the time, we suspected nothing more severe than his annual allergies, with stuffy nose, drainage in his throat, coughing. It was a bad allergy season last spring, so it didn't seem unusual.

He had a few stomach events -- some apples that didn't agree with him. Some nuts that upset his stomach. Some fish that upset his stomach. A few bouts of diarrhea. That was over the course of the year prior to diagnosis.

He was feeling some back pain. But then he'd ridden bikes all his life and had had a few wrecks. Had worked construction as a young man and had some back issues from that. Was in a desk job and had to commute so thought he wasn't getting enough back strengthening exercises.

What got his attention: Went to dr for the worsening allergies in mid-August and was diagnosed with pneumonia. Blood tests showed nothing to be concerned about. One week later his stomach blew up like a balloon -- extreme ascites. That was the beginning of all the ABC tests. The tests continued for four weeks, including at MD Anderson with Dr. Javle.

Biopsy turned up tumors on the liver, Catscan showed a small spot on his lung, other tests -- mets throughout the peritoneal fluid and cavity. He was diagnosed Aug. 26 and died Oct. 24.

In hindsight, I wonder if these events individually were signs of the cancer, or if they were, some or all of them, individual illness events like all of us have now and again. Or has the cancer been there since the time I met him in 1975 when he got what we thought was food poisoning in the college dorm cafeteria from some ham that he ate?

How do we explain cases like the 12 year old boy in California who recently died of the disease?

From the variety of all our experiences, I guess what we do know is that more medical knowledge is needed. As others have said, it's a sneaky cancer, until it smacks us over the head. I hope and pray for a screen someday to save lives. For now, I am grateful for this forum because sharing information will lead, I believe, to answers.

Wishing each and every one of you a good day. My thoughts and prayers go out to all!
Love,
Margaret

Re: How Were You Diagnosed?

Me again.

Just want to add that my husband's cc: was never directly discovered. He was diagnosed by eliminating virtually every other cancer through the tests.

I assume this means that it was so embedded in the bile duct that it couldn't be seen by any of the usual testing/biopsy means.

Margaret

Re: How Were You Diagnosed?

I have to agree with Margaret as it seemed the same with Jim.  First all other causes were eliminated, then after they suspected cancer, all other cancers were eliminated before finding that it was only in the bile ducts.

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: How Were You Diagnosed?

Margaret and Darla.....this will be my shortest post ever.  Same here....every other cancer eliminated and this was the last one standing.  Wasn't confirmed until the pathology of the tumor and liver after surgery.

Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: How Were You Diagnosed?

I always credit a new neighbor/friend for saving my life, she asked if I had been in a car accident because I had so many sores from scratching. I look back and realize there was a lot of signs I also ignored. I own a lawn care company and work outdoors, just thought it was heat, allergies....that made crazy itchy (no bristles left on my hairbrush, forks, knives...) I was also over weight (even though, I had been excersicing eating better and being healthier and losing weight the last 8 months) so I chalked all the nausea, heartburn, shoulder pain abdominal pain to being over weight. Her comment is what made me go to doctor. I was very blessed that since my regular doctor was on vacation I ended up with a very knowledgable doctor who did one ERCP and came out and said "I know what I saw, I know it will come back a false negative and her only HOPE is a liver transplant"! I had my diagnose and cure in 5 minutes very very rare for our cancer! More interesting is  my tumor was only 2cm.!!
I am excited to say I am 22 days away from the 5 year cancer free day!!!
There is HOPE!!!
Thank you God, 2 strangers and Dr. Chapman for giving me this post!!!

Re: How Were You Diagnosed?

Cathy you are one tough cookie!  You are also very Lucky that you got diagnosed so quickly. This is so rare that most people and even lots of Drs don't know what cholangio is, Thank goodness we have this forum , I know that without stumbling on to this site My Husband would not be being treated  by Dr. Chapman. We are so glad that we contacted Dr Chapman one yr ago. Long story short, my husband is on the list for a transplant liver at Barnes. I realize not every case qualifies for transplant but in our case, he is stable enough to benifit with a new liver. Thank God and Thank you Cathy Oh and  Dr Chapman.
Brenda

Re: How Were You Diagnosed?

I'm a similar case as LisaS's. Dark urine, every other bowel movement was light, and man was I itching (only had a high of 3.5 on bilirubin though).  Bloodwork Thursday, Friday Dr. called and said you need to get in to do more bloodwork, did it, but never got the results. Sunday at 2am checked in to hospital on doctor's orders (he knew something was up, still no confirmation) and they did a CT and Ultrasound on Sunday but saw nothing. Monday afternoon, ERCP and a stent and voila! no symptoms any more.  However, there was a 0.5cm x 0.5cm x 0.75cm mass on my bile duct. They pulled samples, but they came back 'atypical suspicious fibrous cells'. I was on a plane to NY on Labor day of '11, 4 days after the pathology came back. We originally had the biopsies going to Harvard but had them redirected to Sloan Kettering. Met with Dr. Weiss and Dr. Jarnagin at Sloan Kettering, both said even if biopsies came back negative, they wouldn't believe them. Wasn't officially diagnosed until 5 days after resection.

And I didn't have a lick of pain either, probably because of the small size of the tumor. At the end, besides the itching, dark urine, and stool issues, everything I ate would cause me to be nauseous, probably because of the elevated bilirubin levels. I'm officially 2 years and 8 months clean. Posting on my recent 'astimosis due to scar tissue' travails in another post momentarily...

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...