Hi all. I am fairly new to this site. My situation is a little unusual as I have been struggling to get a diagnosis for the last 11 weeks. After experiencing a range of symptoms including a change in bowel habits, epigastric and abdominal pain, nausea, a loss of appetite and a weight loss of a stone I have had a multitude of investigative tests including blood tests, an ultrasound, a gastroscope, a colonoscopy and a CT scan that came back all clear. However, finally a few days ago an MRI revealed a tiny 4mm cyst on the tail of my pancreas near the main duct, possibly an IPMN. The report was not unduly concerned and advised me to have a repeat MRI done in 1 or 2 years time. Even a pancreatic surgeon I contacted has told me not to worry about it. However with my health continuing to deteriorate, I have done my own research reading through scientific papers and I have found that it is possible to have a tiny cancerous cyst that is already causing symptoms in a patient. My problem is that I feel I am battling the whole medical establishment as well as family and friends who of course do not take me seriously as I have no official diagnosis. I have never felt so alone in my whole life.
I have this vile thing in my body and no one will listen to me and I cannot get any help or treatment.
Yesterday the pain was so bad that I went to A&E for the 5th time and was more or less told not to come back again because they didn't know what it was and there was nothing they could do for me. I cannot sleep at night - apart from the pain and nausea it's like my brain is firing with all the cellular changes going on in my body right now. Did anyone else experience this? I can hardly eat. I eat because I feel I should not because I want to or am hungry. And I have terrible constipation now after many weeks of multiple soft motions and there is blood in it.
On Monday, I am seeing a pancreatic surgeon (a colleague of the other one I mentioned earlier) but I am frightened he will say the same thing to me, that it's tiny and nothing to worry about. How do you argue with a scientific rational mind when your experience is telling you something else? In any case he can at least refer me (again self-funded) for a PET scan which I have read is very accurate at distinguishing between benign and malignant cysts. I do not think I would be a candidate for resection as I am so thin now. I have no reserves of fat left on me. Therefore not fit enough. I am 60 years old. Since I now have blood in my stool I am worried it is now causing bleeding in my digestive tract. I am still in disbelief at how something so small can be causing so much havoc in such a short space of time, especially as I had no symptoms apart from some very minor bowel problems up until 12 weeks ago. Many people might assume that because it's small its early but I have read that that is nor necessarily true. I fear it is already far advanced. In fact I am just terrified and I am still finding it very hard to accept that this is happening to me. Any thoughts or support would be welcome but please do not tell me it is possibly not PC and could be many other things. How long does it take to mentally come to terms with this? I feel so alone. It has caused massive fights with my husband because he doesn't believe me.
A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).
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