How Were You Diagnosed?
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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.
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.
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).
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!
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.
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.
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.
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