Did the lab tests show anything was wrong?
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Additional note: Tom also had Gemzar/Cisplation for about 5 months, that was followed by 5-FU (which I did not think he was strong enough to handle as he’d gone downhill and was only 105 lbs) He only had 3 rounds of 5-FU, they cancelled the 4th round and by the time he was supposed to have the next round he was in the hospital (Monday to Thursday) started Hospice on Friday and passed away on Sunday. It happened quickly, he did not suffer thanks to liquid morphine and he passed away at home – in my arms, just where he wanted to be when he passed.
In my husbands case, he had NO symptoms. But because he was on a ‘statin’ drug, his doc did blood tests every 3 months. In Jan ’08 his tests were normal, in Mar ’08 his alk phosphate level was 10x elevated. He underwent an ERCP and they found a narrowing or stricture in the left lobe of the liver, the doc did a brushing, inserted a stent and the brushing when to pathology and came back positive for Cholangiocarcinoma. After a 3 yr, 8 month battle (successful liver resection, 18 good months, started turning yellow, new tumor, radiation & chemo (Xleoda), that tumor was dead. Three months later, new tumor discovered, aggressive growth tripled in size w/i 3 months – his kidneys started to fail and 7 days later he passed on 11/20/11)
Demand an ERCP, have them do a liver panel and get the Alk Phophaste level checked, also Tumor Markers! It could save your life, or at least tell for sure if you have Cholangiocarcinoma.
Go with God,
Hugs,
MargaretHi Breakaway,
In regards to your question about my daughter’s ultrasound- someone other than her doctor read the report and I have the report that says that there is a mass in her liver. Yet I guess her family doctor didn’t think it was important enough to let us know. That is why she has switched her regular family doctor. Who knows what difference this would have made in being diagnosed 5 months earlier. We assumed nothing was found on the ultrasound, therefore no call. No news is good news kind of thing. Looking back, who would ever think a healthy 25 year old would get bile duct cancer? It would be a million to one shot. We learned our lesson in to never wait for the doctor to call. Call them and bug them until you get an answer!The process shouldn’t have taken long. In my case, it took a total of ~ 8 weeks. I would not recommend ‘no treatment’ path. Surgery is the only ‘cure’. I’m surprised you did not have an ERCP, which is a pretty definitive procedure for nailing cc. Where are you being treated? If it’s not a major cancer center, you’re not giving yourself a good chance. The symptoms go from almost none in the beginning for many patients to downright nasty as the disease progresses.
BTW, the surgery, if it’s a resection, is not that bad. I was home in less than a week. If the incision didn’t have infection, it would have been very routine, and not very painful at all. I think I used a total of two pain pills after discharge.
This is a rare cancer and few surgeons and few hospitals have experience with it.
My only symptom was unexplained weight loss…..about 20 pounds in 2 months. I had no jaundice, itching or right abdominal pain. After numerous blood tests, ultrasound, CT ,MRI and biopsy, a tumor was identified and confirmed as intrahepatic cholangiocarcinoma.
Betsy
Hi,Andy,
May I ask how old are you?
Based on the info you provided,,it seems to me that you had your health problems for about 9 months. And if your GP only ordered the routine test like CMP,CBC,LIPID PANEL or blood or urine cultures, all this standard chemistry or lab tests cannot tell you anything about cancer or benign growth . Ultrasound result is highly depended on the person who performed the scan and therefore the result will not be as complete and accurate as MRI OR CAT SCAN with contrast. The discomfort of your stomach for a month make me worry. I will seek a different GP to reevaluate your health concern.
All the members commented before me Are caregivers or patients like myself and their suggestions to you to get a scan done and CA19-9 blood drawn(lab)
are good advices. The easiest and fastest way to get this done is to go to ER and tell the ER doctors you have this ABDOMEN problem offf and on for almost a year;and request a CAT scan( normally without IV contrast for quick result) done in ER. Then if they find out anything,they will refer you to see a GI specialist for further evaluation. It is much better than ultrasound.
I think this will be the best solution for you at this point and you should do it as soon as possible.
. We are not doctors,but our suggestions at least will give you ideas from our hearts and minds.
God bless.Kris, I don’t know more, just have been in the barrel longer than you. One of the great things about this site is being able to benefit from the experiences of others. Now Percy, he knows more and reads more!
Thanks Jim. I pray for you nightly (along with everyone else on this site) that you get some good news and that God holds you close and heals you.
Being new at all this, I am still going with what the doctors say, mostly. Except for the first surgeon.
I knew a moderator or someone who knows more about what to ask for would chime in and fill in the blanks for Breakaway.
KrisI agree with Kris and would add liver function test and CEA (another cancer marker test) to the blood tests. Also, I would insist on an MRI, CT or PET/CT scan right away. Jaundice (and all over itching without a rash) are indicative of possible cholangiocarcinoma. I’m going through a time of uncertainty myself, and my onc has given me a standing blood test order which I do monthly. The tests she’s ordered are:
CBC
Ediff
Chem 20
CEA
CA 19-9
ICD-9The above list includes liver function tests (I think it’s rolled up in the Chem 20).
I had a successful resection 4/2009 and had two years of unremarkable blood tests, then the liver function bili numbers and CA 19-9 results starting 8/2011 became somewhat elevated. I’m on an increased scrutiny now until this all sorts out.
Good luck.
Hi Breakaway:
I presented with no symptoms of cc. I had a gallbladder attack. I always thought the attacks were my bad back acting up. I had only had a few attacks over the past few years. I finally went to my regular doctor and she immediately said “gall stones” and sent me for an ultrasound. The ultrasound tech saw the tumor in my liver. She did not say anything but I knew something was wrong because she spent so much time trying to “get a good picture of the liver”.
If I were you I would demand some more tests. Even a blood test checking the CA-19-9 marker would help. But if you are presenting with pain and jaundice, I would think there is something wrong, too. And be your own advocate! No one else knows just how you are feeling. Make the doctors listen to you. It’s your life, so err on the side of caution. Get the answers you need. The earlier they catch any of these gastro cancers, the better.Kris
breakaway wrote:Jim: why were you taking statin and triglyceride reducers in the first place? Sorry, I don’t know what those things are. Did you have any symptoms when you got diagnosed?The statin and tri reducer were taken because of cardiac issues, and both had been taken for more than 5 years. The statin (Zocor, etc) was to reduce cholesterol. I had no symptoms at all. Dr. Lee (NY Presbyterian) is the final authority on all my medical care, cardiac or not. The key to my diagnosis happening promptly is Dr. Lee, who runs her practice very differently than most. She does not employ a nurse or tech, nor do the other two cardiologists in the practice. I asked her why a few years ago, and her reply was telling: “a nurse or tech does not have the same level of investment in your well being.”
The sneaky thing about cc is that it often presents with no noticable symptoms before it’s too late, plus it’s often mis-diagnosed initially because few doctors have ever seen it.
Hi Pamela,
Thanks for your reply. That’s really quite bizarre that the 1st doctor didn’t call her back. That would make me angry. Was there any reason given as to why he didn’t call her back? So the 2nd doctor looked at her original ultrasound pictures, and thought something was wrong. I think where I live, the family doctors aren’t even the ones who do the analysis of the ultrasounds. I’m pretty sure they have some kind of lab person (maybe a doctor) who looks at the scans and then sends the results to my family doctor. I could be wrong about that, so maybe I’ll call them about it. Did your daughter get any blood tests done at this point?
Dear Breakaway,
Welcome to the site. I will tell you my daughter’s symptoms. She started out having a pain in her upper right abdominal area. She also had a great deal of back pain. She worked at a uniform company and was constantly lifting heavy loads and running up and down stairs. She thought that is why her back hurt. She lost around 40 lbs. from around March to August. She could only eat a few bites of food and she was full. She thought she had gall bladder problems. She had an ultrasound in April and her doctor never bothered to call us with any results so we figured she was fine. She knew something was wrong. She had a gut feeling. So she went to a different doctor and the second he looked at her ultrasound he knew something was seriously wrong. He sent her to a gastroenterologist and ordered a CT scan. She had a huge tumor in her liver. The gastroenterologist wanted to send her to Cleveland Clinic. We chose University of Michigan Hospitals. She has had an MRI, PET scan, and liver biopsy. Diagnosed with CC Aug. 29,2011. She is only 25. She has had 8 rounds of chemo and had tumor shrinkage after 4 chemo treatments. She is having another MRI tomorrow. I would tell you to demand a scan to see if there is anything wrong. Early detection is crucial with this disease. Don’t take no for an answer. You seem to feel something isn’t right so you must be your own advocate. Please demand a scan. Take care.Hoping for the best.
-Pam
Jim: why were you taking statin and triglyceride reducers in the first place? Sorry, I don’t know what those things are. Did you have any symptoms when you got diagnosed?
marions: well it all started last year. To make a long story short, I suddenly felt very sick and dry heaving. Then for a month, I felt stomach discomfort and a kind of brain fog like I was in a haze. Within 2 months, I had lost about 20 lbs. I looked quite pale. Occasionally my skin seemed to be a bit yellowish but it was so slight that it was practically unnoticeable. The symptoms would seem to come and go. I would get a bad week and then maybe a couple of decent weeks. By the summer time, I was gradually feeling better. I had a few weeks in August where some of the symptoms returned. But since September, things seem pretty good. I haven’t had any major symptoms except for the fact that I am 15 lbs underweight. I eat but I can’t gain. I have done quite a few lab tests and they haven’t found anything. My doctors basically tell me to stop worrying. It’s the uncertainty that I don’t like.
You bet! I had routine liver function tests quarterly because I was taking a high statin dose in combination with a triglycerides reducer and the liver enzymes came back just a little high … high enough for my sharp eyed cardiologist Dr. Sun Hi Lee to smell a rat. BTW, a number of other doctors saw the same blood tests and no one else had the correct call. She lead me through the entire diagnostic progression, where cc was found, and had significant input with the surgeon, who wouldn’t have taken me with her aggressive lobbying on my behalf.
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