Typical long-standing symptoms and nothing seen on CT ??? can this still be PC ?

[hopethereisnothing]

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 (in the form of burping and flatulence- no pain) 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,saw a gastroenterologist and had (poorly done) ultrasound which showed nothing.
Almost 3 weeks ago, I started to have severe excruciating 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 only a couple of days ago, tumor markers Ca19-9 and CEA, 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 it 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 ?

N.B I don't live in the UK and I have all my tests and scans privately so I can get what I need and have my results soon ( if somebody wonders how I could have all those tests in this short period of time).

 

[Skippy]

I am sorry to hear of all those symptoms and hope you find some answers. My 74 year old brother had no symptoms apart from one complaint of his skin itching. He was on warfarin tested by blood tests re his previous two leg clots. During one blood test he merely was phoned and asked to go straight to his hospital for a scan. It was only then he was informed of a 3cm shadow on the tail of his pancreas. 

Within four weeks he was in hospital prepared for a Whipple op. The day before his op he turned jaundiced. 

Up to his blood test he didn't think or feel anything was wrong with him. I hope your anxiety and symptoms get sorted soon. 

[hopethereisnothing]

Thank you for your reply and sorry to hear of your brother's diagnosis. Actually what you describe is the common scenario as I read in many patient stories: mild or no symptoms leading to ( sometimes incidental) diagnosis of PC on a scan or blood test, often at an advanced stage. But in other cases, patients have symptoms for some time and either they neglect them or get dismissed or misdiagnosed, before a definte diagnosis of PC is made. I read about some cases where lesions were missed on scans and that is what makes me super anxious.

I will probably be getting endoscopic soon to have peace of mind.

[hopethereisnothing]

Update MRI came back with report (normal pancreas) however GI doctor says this is not conclusive and that I need EUS

[Skippy]

Brilliant to hear. So far so good  

[sanita]

Hello, was reading your post, some time have passed, was wondering how you are doing?

[Rolland61]

Hello, i was reading your post and i can see that you have been very active for doing all necessary tests to rule out  malignancy related to your symptoms.

nowadays technology of CT scan and MRI with MRCP are very good tools to find pancreatic problems including cancers.  In case of early cancers

,MRI and CT may miss some of them but even then, secondary sign [such as pancreatic or bile duct dilation] would be most propably shown on both scans. MRCP is very accurate to diagnose strictures and dilated ducts which are present most of the cases which are causing GI symptoms. It is very rear that Mri and CT combination is unable to detect this kind of  abnormality in the pancreas. It is true that  EUS is the most accurate tool to detect small mass but when i look your known risk factors and symptoms (based on your post) , your odds to have pancreatic cancer is near 0.  If your GI doctor recommends additional tests as a next step, surely in that case you should follow his advise. His responsibility has been to collect all necessary background information and risk factors related to your case  and to make decision based on that. Sorry for my english, it is not my mother lanquage. 

Take care of yourself and allow yourself to relax a little bit.