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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There are a number of pathologies of the GI tract that have overlapping symptoms. There can also be one or more co-morbidities complicating a diagnosis. Community hospitals and small primary medical centers do not have the level of expertise found at comprehensive medical centers in major metropolitan areas.
When I had onset of symptoms, It was something I never experienced before. I first went to a PCP…I had two and chose the one in NYC rather than close to home figuring he had a larger and more diverse patient base. Over the course of three days, visits resulting in a sonogram, blood and hematology tests and a physical exam. Not being able to make a conclusive Dx, my PCP escalated the testing and called his medical school colleague a few blocks away at an NCI designated center of excellence with a Hepatobiliary department and high volume pancreas center. A CT with contrast was immediately ordered which imaged a neoplasm. An EUS quickly followed to do a tissue biopsy and an ERCP the following morning. My PCP knew his limitations and didn’t hesitate calling in a Hepatobiliary surgical oncologist who rapidly made the Dx.
When I have something out of the ordinary, I travel to a major center-in my case NYC or Philadelphia where major centers have a higher level of expertise.
Absolutely the same symptoms-- first my primary got me a good ultrasound (I'd already had 2 that showed nothing); this one looked like a gall bladder removal was in order. The surgeon ordered the MRI and when the results were in sent me to a Whipple specialist...who did an endoscopy and inserted stents and still no definitive diagnosis. Then he sent me to a gastroenterologist who when I came out of anesthesia very kindly sitting next to my side told me I had pancreatic cancer; small, but there. Took him 6 go arounds with his camera apparatus to find it. At last I knew. That all took about 3 months and the endoscopies were hard on me--I actually asked to stay in the hospital instead of going home for the stent insertion one. (I'm 84)
I had the worse symptoms for about 2 years after vacations -- always by the ocean, always eating my favorites deep fried anything, always drinking fancy drinks, always stressful plane rides with covid still around-thus the early ultrasounds with no red flags. Funny thing, I had bra strap problems too and quit wearing a bra unless I was going out in public. And tight waistlines (I was not overweight, 120 pounds) but the waist was always too tight and caused me distress. I removed more elastic from pants than I care to remember.
So--to be encouraging--it's over 2 years later; I've had the Whipple, had to quit chemo, had radiation for one mass--now shrinking--and I feel terrific. Just had the 3-month cat scan with no new or old cancers. Good for you in continuing to have MDs look for something; it's not easy to find evidently. I owe a lot to that gastroentrologist for not giving up looking, even though he was behind schedule and it was the end of the dayl. As far as I remember, no doctor ever ordered a cancer antigen test; that would have helped I would think with a diagnosis.
Oh, I also had lots of prayers including a lovely prayer quilt from a non-denominational group--that gave me much encouragement.
I should have sent my comment to you rather than HOPETHEREIS NOTHING.
I didn't pay enough attention to the timing of the postings--and I can't fix it now as I am technologically challenged! Same symptoms, same long time for diagnosis--finally caught on camera by a dedicated gastroenterologist. Hope you can read my posting to HOPETHEREIS NOTHING.