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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Joined: Tue Oct 24, 2017 11:01 pm


Postby fifi » Sat Nov 11, 2017 10:11 pm

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.

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Re: Overwhelmed

Postby Ant11 » Tue Nov 14, 2017 10:08 am

I think other forum members have replied under another thread "Reliability of CT Scans" that you have open? They have first hand experience with losing loved ones through this vile disease. Unfortunately for those that have been diagnosed they all had to deal with it in different ways, some accepted it and others never could.

If you had PC you almost certainly would have been diagnosed with the tests undertaken.....

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Re: Overwhelmed

Postby Marmalade » Tue Nov 14, 2017 5:25 pm

Dear Fifi,

Struggling to find or accept a diagnosis can be very difficult - life is never straight forward and there may be many facets to our health problems. People are very complex and there is not a one size fits all diagnostics kit. It seems from what you tell us that whatever ails you is very unlikely to be PC, a disease that no one would seek. That leaves you with some options. One is to to continue to pursue a very unlikely diagnosis and one which qualified people who see it all the time have ruled out. Another is to start tackling the cause of your anxiety and reticence to accept the findings and to managing your symptoms.

You need to beware of researching on the web as an unqualified person especially if you are only giving weight to out of context snippets and ignoring the weight of evidence from recognised and verified trials. The net is completely unregulated and unless a paper has been accredited by a recognised body you should be very cautious. I can write a paper on PC and put it on the web and I am an accountant! The people who write do not know you, do not have your full medical history or, in some cases, any recognised qualifications at all. Their sample sizes are often minuscule and some, even very eminent ones, refuse to publish their outcomes at all as they would make a mockery of their taking good money from vulnerable people.

Sadly, it is not always the case that someone else can solve our problems, medical or mental, sometimes we, as adults have to take responsibility for ourselves and seek positive support to deal with with what is, rather than what might be.

I hope you find the cause of your pain and some peace of mind

Marmalade x

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Re: Overwhelmed

Postby fifi » Sun Nov 19, 2017 7:57 am

Thank you Ant11 and Marmalade for your patience in talking to anxious people who haven't yet been diagnosed with PC. My fears comtinue though. 5 days ago I was admitted into hospital because the pain was so bad and in still here. They have done blood tests which show my amylase and lipase are out. My constipation is bad - they have taken a stool sample. They have also gone a tan colour now. Is that considered pale? The dietician came and talked to me saying they want me to put some weight back on. They are going to do an EUS in a few days time but the consultant says it's just for my piece of mind. He says it's not cancer but how can he say that? they can't tell definitely unless they take a biopsy and they won't be able to because the IPMN is only 4mm. Is it possible to be so symptomatic I ask myself when it's so tiny? I suppose nobody can really answer that question for me. It's certainly possible as I have found out to be the opposite - no symptoms and Stage IV, finding out very late. I am so frightened. This is just a nightmare. It seems I will just have to wait until it's bigger and my symptoms are worse. Would a CT/PET scan be helpful in showing if this thing on my pancreas was malignant? Thank you, friends.

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Re: Overwhelmed

Postby Dandygal76 » Sun Nov 19, 2017 11:03 am

Fifi you do not have pancreatic cancer and you need to accept that. Our bodies all have niggles and lumps and bumps and that is why we don't all get routinely MRI's from head to toe as a preventative measure because is causes more problems than it solves. Logically you would think it would save the NHS a fortune but the opposite is true. I had to have a full bodied MRI scan once because of peripheral neuropathy that means I cannot feel touch very well now in my feet or my hands. During this process they found a bronchogenic cyst that has a less than 1% chance of turning into cancer and now they try and scan me tediously every 6 months and I wish they have never told me. The 'current medical thinking' is I should have it removed - full thoracotomy and over 4 months off work. I could lose my voice where it is affecting a nerve and my heart vesicles surround it which can cause major complications. Why am I telling you this - because I was born with the blinking thing. 41 years and no issues. I pop to the scan once a year if I can be arsed and I will take my chances thanks. The thing is - that 4mm blip is probably just that. An annoying blip you have blown up into something you have convinced yourself of. You don't think about this re external things - moles or skin blemished you have always had and your insides are the same. Even if was PC (which it isn't!) - it would not be causing the symptoms you have at that size. We are really sympathetic to people who have those initial concerns - we have been there and I don't want to prevent other people posting genuine concerns that we can help with at the start. However, you do not have pancreatic cancer and this is the wrong forum for you. People here are fighting, frightened or devastated in the aftermath and I think you need to consider this because we cannot help you - we all know you don't have PC and we have no experience of whatever it is you do have.

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Re: Overwhelmed

Postby Wife&Mum » Sun Nov 19, 2017 5:14 pm

Dear Fifi,

I’m sorry that you are going through such a hard time and hope that the doctors soon get to the bottom of what is making you feel so unwell.

It probably hasn’t escaped your notice that the 3 previous responders to this thread have all done what you asked forum members not to do i.e. to cast doubt on your self-diagnosis of pancreatic cancer. I’m sorry but I’m going to do the same. My intuition tells me that your cyst is not malignant.

This forum is the most wonderful, supportive place for pancreatic cancer sufferers and their loved ones. And 2 important components of being supportive are honesty and positivity. If you’re uncomfortable with getting support of this kind at the moment perhaps it’s time to take a break.

Wishing you well Fifi, and wishing you relief from your anxiety.

W&M x

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Re: Overwhelmed

Postby Quickasyoucan » Mon Nov 20, 2017 10:50 am

Hi Fifi I'm sorry to hear that you are so distressed but you do need to accept what the doctors are telling you. As dandy gal says we have internal and external lumps and bumps. I had a recent ct which revealed a 1.8 cm mass on my adrenal gland. They call them incidentalomas literally as they are often picked up on ct. 80 percent are benign 20 percent malignant. Malignant adrenal cancer is as bad as pc. They reviewed my scans and have told me it likely benign and to get it checked in a year. I could go down a rabbit hole of what ifs or I can accept it. I choose the latter. My father died of pc in 7 months and my mother of mnd I just over 12. I could make myself ill just imagining I might go the same way or I could choose to accept medical wisdom and live my life. We are not medics but pc is generally fast moving and unrelenting and causes symptoms once it has grown sufficiently to occlude ducts and arteries. I wish you the best of luck in returning to full health.