How did you know something was wrong?
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I felt nausaus for quite some time and itchy – the itching was attributed to medication – then also finally had an ultrasound done of my gall bladder. The doctor said it looked like there was “sludge” in my gall bladder but no stones and I went on my way. …. proceeded to be nausaus constantly so went back in many months later – they did another ultrasound – said there may be some small stones and oh yeah – looks to be a cyst in your liver – but that’s common -we can refer or just watch – I had them refer me to a surgeon I had been to previously – after looking at my ultrasounds and also looking at an old MRI of my back – the surgeon came in with pictures and announced that yes my gall bladder should probly come out – but his main concern was the “common” cyst in my liver as in looking at the old scans it appeared it had been there for quite some time ….. his quote “if you were my daughter I would send you to Mayo so that is what we will do” Thanks be to God for him as he saved my life with that referral. Other than that I had nothing that would indicate a problem – my enzymes and all liver function tests were normal even when I got to Mayo I at first got the impression that I was going to be sent home – but after a full day of testing they decided we needed to go in and find out what this was. A resection specialist did the surgery the next day and called my husband half way through to tell him it was cancer ……
Cathy, you cracked me up! Good humor for the day. I remember when Teddy, who was Sicilian, itched so bad and had not turned Jaundice yet and I thought, OMG he can’t be allergic to tomatoes, what will he eat. I only wish it had been an allergy. Then when we went to the first doctor and he declared, “you are Jaundiced”, I piped in, “Teddy, you know I don’t like you in yellow”.
MN- Hi, my only sympton I paid attention to was being ITCHY, no rash though. I now realize there were other, lots of nausea and stomach issues, but when you have any weight issues those are in the” lose 20lbs cure “!! I also ignored being tired because we own a very busy lawn care business and “lose 20lbs”!! I also ignored my great tan because I am italian, a california girl and work outside (also 20lbs extra looks better tan!), little did I know that all the “golden” was caused by jaundice!! So for me being ITCHY was a good thing, God sometimes really has to knock hard!!!
Lots of prayers-CathyMy dad had no syptoms – He is pretty physically fit and started off just feeling full, a full “I just ate too much” feeling and then he could feel the tumor in the left lobe.
6/1/11 had his 1st Cat scan then the biopsy 1 week later. On chemo now, praying for miricles!
Good luck!
Suzanne
My husband Tom had NO symptoms – however he was on a ‘statin’ pill for high cholesterol, therefore had his blood tests – inculding liver function tests done every three months.
In Jan ’08 everything was ‘normal’. In March ’08 his Alk Phophsate level was 10x above normal. The stopped the ‘statin’ drug immediately, then changed is diet to only green vegetables, then another type diet and wanted him to comes in every week for blood tests.
After three weeks of this nonsensce, I took him to a civilian facility in our home town with the blood work and immediately he was scheduled for an ERCP and they found the cancer in the left lobe of the liver. After walking our daughter down the Isle for her May 17, 2008 wedding, his left liver resection was scheduled for June 16th 2008. Three weeks in the hospital, no chemo no radiation because they had gotten clean margins.
18 months later he turned Jaundiced. He underwent getting a drain tube inserted into his liver because his bilirubin was at 24,800 which is why he was turning yellow. The new tumor is inoperable because it’s wrapped aroung the hepatic artery. He was given 6 months and told that radiation / chemo would not help. We sought 2nd, 3rd and 4th opinoins, and although they all agreed that it was inoperable, the other opinoins all agree that radiation / chemo could help.
He underwent 28 rounds of chemo, oral chemo (xeloda) then IV chemo (Gemzar and Cisplation) and he is still here some 20 months later.
The only reason that they found Tom’s CC when they did was because of the liver function tests that he as having done every 3 months by his Veteran primary care physician.
Hope this helps!
Margaret
I lost about 15 to 20 pounds, had no appetite and had to nap during the day. My GP ordered a CMP and found abnormal liver enzyme numbers. He also told me liver cancer is very rare and it could be a hemangioma. He ordered x-rays, ultrasound and cat-scan and finally an MRI. But after the MRI, he was very concerned and couldn’t say for sure it wasnt cancer. He sent me to a surgeon the next day. One of the first things my surgeon said to me was, “how much do you know about why you are here?” I had a liver resection about a month later.
Betsy
Itching without a rash. Also seemed a lot more tired than usual. Within a month I was jaundice. No pain whatsoever.
Did have to change doctors because the practice I originally went to for the itching just put me on steroids and told me a liver problem or lymphoma would be very unusual (I asked as I had read about itching as a first sign). They also felt more blood work would not be in line as I just has blood work including liver function tests two weeks before at my yearly physical and all was good.
Teddy started itching and after 2 weeks Jaundiced. 2 weeks later he had his Whipple. There were no other symptoms. At first we thought he got a bite or became allergic to something. Sometimes there are no symtoms until it is in an emergency status. That is why it is so hard to detect.
My dad complained of itching up to a year before he was diagnosised. It drove him nuts! He went to the doctor many times and was prescribed medication for itching. Then came symptoms of the flu. All of this was missed by his GP. It was his cardiologist that said something isn’t right. By then my dad’s blood work was out of whack and more tests were ordered. He was also anemic the whole time and on iron pills.
I don’t think there are any identified genetic links with cc.
In my case, I had no identifiable symptoms. But my cardiologist, Dr. Sun Hi Lee, had ordered a quarterly liver function test because I was taking a large statin dose in combination with Tricor. She immediately noticed a very slight increase in liver enzymes, just over the minimum trigger for reporting. She initiated a number of steps which lead to rapid diagnosis. She had me suspend the statin for a month, and retake the liver function test (same result). Then she had me see a local gastroenterologist. He ordered an echo of the abdomen, the a CT. He then said there was a need for an ERCP, which must be done at a big city hospital. As fate would have it, the person he trusted for the test was on vacation and no clue as to schedule. Long story short, called Dr. Lee, who got me scheduled for an ERCP at NY Presbyterian the following Tues with the director of endoscopy, who sent me to Dr Kato, the brilliant surgeon who performed a resection. That was in May of 2009, and so far, still clean.
No symptoms showed until well into the diagnostic process (whole body itching w/o rash, yellow man). All that went away fairly soon after the ERCP, since three stents were placed.
This disease is very uncommon (<2000 cases per year in the US), but strange things can happen. Not many months before I was diagnosed, a girl we knew from infancy, and now married, had he husband diagnosed with CC. She had grown up across the street from us and lived there for over 20 years. I had never heard of CC before that, and probably didn't know the name when he died. By the time he was diagnosed, palliative treatment was the only course and he succumbed within months of diagnosis. When I was diagnosed, Sherrie could hardly believe it, since she was very aware of how uncommon cc is.
We all have to listen to our bodies when something doesn’t feel right. What I have noticed as a common thread in posts is that many doctors say “Your symptoms are in your head”. My mom went to her doctor 3 years ago to complain of gallbladder pain. After a normal ultrasound, she went on her way. Went back almost a year later complaining about the pain again and the Dr. filling in for her Dr. told her she didn’t need surgery, she needed to learn how to maintain her gallbladder pain by eating correctly and just deal with it. A year later she went in again, and her main Dr. said to demand that they take out the gallbladder to relieve any pain. That’s when they had to stop mid surgery because of the tumor they found.
My question to all of you that are dealing with this disease, how did you know something wasn’t right? What were your complaints when you went in to the doctors?
My aunt also passed away from this disease two thanksgivings ago…therefore, it may be genetic…even though the Dr’s say it isn’t and it is just a fluke. I still think it is odd that such a rare cancer can hit twice in a family.
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