Pancreatic Cancer Support Group
Pancreatic cancer is represented by the growth of a malignant tumour within the small pancreas organ. Each year about 31,000 individuals in the United States are diagnosed with this condition, with more than 60,000 in Europe. Join this community to talk to others who have pancreatic cancer or know someone who has. Get advice and the support you need.
My dad died 5 yrs ago of PC. 6 months later I was dx with pancreatiits, my lipase was double, AND my ca 19 was double. Drs did a Ct and EUS and it was clear. They said that CA 19 can increase some with inflammation. My pain was upper left stabbing. Ever since Ive had bouts of this pain and each time my lipase is slightly elevated. My CA 19 went into normal range though bounced up just 1 pt above normal recently. Again, lipase slightly elevated.
Ive not been in a constant flare of this stabbing pain whereas before it would be in flares. Lately Ive been more tires, and my bowels are always soft serve-never normal.
Ive had several EUS and MRCP that have been clear but I still worry something sinsister could be going undetected. Any input appreciated.
Ive not been in a constant flare of this stabbing pain whereas before it would be in flares. Lately Ive been more tires, and my bowels are always soft serve-never normal.
Ive had several EUS and MRCP that have been clear but I still worry something sinsister could be going undetected. Any input appreciated.
My hsb was dx a year and half ago with CP. They did a EUS (it was a young dr that did the EUS and also a Liver specialists that dx it as well. They said CP, but the report says Unspecified Pancreatic Disease) and said he had scarring throughout his entire pancreas. He also had/has steatorrhea. He has recently lost about 13lbs, has some abdominal pain, constant nausea (especially with activity)..never because of what he eats or because he eats. Actually eating usually makes him feel better. He really can eat anything he wants. He just doesn't have hardly any of the "normal" symptoms, which like you, makes me nervous.
So, I do understand how it is nerve wracking wondering if you've even been dx correctly and if not, then when and what is the correct dx or has my disease changed? But as the previous poster said, most of the time what we've worried about isn't what usually happens.
All I know to do is educate myself on this disease, along with other possibilities of diseases. I have discovered the medical field has a real lack of empathy or concern and unfortunately my husb. also lacks some of the same concern, (being that he drinks coffee, pop and smokes 2pcks a day).
I would suggest you educate yourself, keep on top of your symptoms and find a doctor that cares.
My main pain symptom is stabbing/squeezing and now I get it some in my back but not straight through.
GIg2girls, I havent even been dxd with anything. One dr said likely CP, others say no, and they arent sure whats going on.
The only things I find that cause a rise in lipase AND CA 19 together is: cancer, pancreatitis or gallstones (which has been ruled out). I know PC and CP can be "missed" due to how challenging it can be to view the organ.
I get my next CA 19 tests tomorrow, and I have my next scope on Thurs. Im really very stressed about it though I try not to be as Ive had mulitple normal scopes over the yrs, but again-things have gotten worse.
Gig2girls, theres a great great CP support board on FB thats private if you are on it.
One good thing, had genetic testing for PC and it was neg