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Long standing symptoms and nothing on CT scan: Does it happen often?
Hello everyone. Iam new here and don't really know if this is the right place for my question, but I am literally having the most difficult times in my life. I think I have PC and still waiting for tests for it.
I am a previously healthy 39 yo female, I don't smoke or drink and have no family history of any cancer.
I started to feel unwell in October 2022, first symptom was menopause-like hot flushes, followed by feelig gassy and flatulent. I then thought this must be my hormones messing up with my gut. In November I got some abdominal pain, increased frequency of stools (occasionally loose but no color or smell change or floating ..etc) and new unusual burping.
I was thinking of colon cancer, had some tests, ultrasound and CT with contrast, all clear.
I then had colonoscopy and gastroscoy, all clear.
I had mild symptoms since January to mid-March when I started to have mid-back pain, just where a bra strap sits (The typical location of PC pain).
I got terrified, went to a gastroenterologist and had (poorly done) ultrasound which showed nothing.
Almost 3 weeks ago, I started to have severe upper abdominal pain refered to the back, mainly after eating (also typical for PC) and noticed that I lost weight +/- 10 kg since October.
I had a new CT scan with IV contrast tumor marker, amylase and lipase blood tests, surprisingly ALL were just NORMAL.
I took second and third opinions regarding the CT scan from other consultant radiologists, all said there was nothing suspicious!!!
I wish I could believe them but I have symptoms that can't be explained by anything else. I am now waiting for an MRI scan and I am dreading as i think it will defenitely show the cancer.
The question is : did anyone have PC that showed severe and long standing symptoms and did not show on CT scan ? and if so, how was it diagnosed ?
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Not from the US unfortunately. I will probably have an endoscopic ultrasound and will consider sending the scans for a second opinion.
Your story is a difficult one. The EUS seems like it is the next step. Best of luck in getting answers. If you don't have pancreatic cancer, hope that you will be able to get a diagnosis of the cause of the symptoms and treatment to make you feel better. As a pancreatic cancer patient. my intestinal symptoms have been a major issue in quality of life. Pancreatic insufficiency is the cause, it has taken me a while to adjust the dosing of the pancreatic enzymes. It is difficult to not be able to go out as much because of the intestinal symptoms. I don't like to eat away from home and need to be conscious of the location of the bathrooms when I am out in public. This has become my new normal. I continue to work on the issue and hope that I will at least be able to go out in public places more easily.
I have unusual excessive burping for almost 5 months now. This symptom actually makes me very anxious as I read a lot on the internet that it is a telltale symptom of pancreatic cancer. I wonder how frequent this symptom is in real life.
Have anyone of you (patients) or relatives diagnosed with PC had brping as a symptoms before or after diagnosis; but not related to any medication or surgery?
No. I was diagnosed stage III in Jan 2021 and have had Whipple surgery and chemo since.
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2 ReactionsYou mean no burping ?
@hopethereisnothing correct. No burping before or after diagnosis, or since surgery. None.
Yes, I had onset of burping a few days after darkening of urine which was my initial symptom. The burping occurred in conjunction with eating. The tumor in the head of the pancreas was compressing my bile duct and that resulted in not having enough bile available for digestion. The tumor may also have interfered with an adequate amount of digestive enzymes. With incomplete digestion, food was fermenting as it mixed with bacteria in GI tract causing bloating. I had to burp frequently to get relief from the bloating in the stomach.
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3 ReactionsI have burping with and without eating and flatulence as well. As you mentioned, this can be caused by deficiency of pancreatic enzymes or obstruction of pancreatic duct. I am not diagnosed with PC but I highly suspect it.
Have you tried the pancrealipase dosing calculator at https://digestthis.ca
It eliminates a lot of the guess work. I can relate to always being cognizant of where a restroom was as I was never prescribed Creon for several years.The GI issues were resolved using Creon and cutting out most fats like no more cream soups, not using butter on or cooking with it. Everything firmed up and no more sudden urgency. Quality of life significantly improved between using Creon, optimizing dose and being careful with diet. Each pancrealipase differs due to differences in how the enzymes are processed in making a particular brand. If after optimizing and still not getting the desired results, ask the dietitian or your prescriber to evaluate one of the other brands (Zenpep, Viokace, Pertzye and Pancreaze.
I know of patients who unsuspectingly had an underlying co-morbidity. One developed lactose intolerance and the other had celiac disease. Other potential co-morbidities can be Crohn’s, Ulcerative colitis, IBD/IBS as examples.
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2 ReactionsI have had difficulty with getting adequate calories without any fat. I did purchase some MCT oil but haven't used. I am interested in knowing about any experience people have had with MCT oils.