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Pancreatic Cancer Action
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Pancreatic cancer?

Hi. I have been ill for the last 3 months with bowel issues ( constipation/ Diarrohea), appetite loss, weight loss of 6kg, epigastric pain and nausea that come and go, night sweats, and a burning mouth and tongue. I have had numerous tests - colonoscopy, gastroscopy, 2 ultrasounds, ct scan with contrast and then an MRI that showed a 4mm side branch duct cyst on tail of pancreas. Numerous visits to A&E, bloods normal. Finally had an EUS that confirmed cyst looked benign. No biopsy possible as it was too small. But I feel so ill and the symptoms get worse. What can I do? I have found that there are some rare adenocarcinomas that are not typical and that mimic side branch duct IPMNs. In this one example I found it looked like a 1.5mm cyst on the outside but when they cut it out it was a 8cm solid adenocarcinoma. I can't get any pancreatic surgeon to listen to me. They are only interested in textbook cases and say it's impossible for me to have cancer. Everyone thinks I just have IBS/ hypochondria. I am having a PET scan tomorrow but apparently even a PET scan can miss tumours if they are very small. I am so confused, just know I feel very ill. Any thoughts?

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gorinas,

Here in the States we can express our fears and researched findings to our doctors and they will do whatever testing is required to rule out the worst. But.... we pay for it $$$. Whether it's insurance or out of pocket.

Express your concerns and fears. Better to err on the side of caution than not.

What your experiencing sounds horrible. The squeaky wheel gets the grease. Stay on top of them. Pancreatic issues, as you know, are nothing to mess around with.

Stella ❤

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Concerning Health Costs. It is a great pity that Obama Care was not established in the US. Here in the UK there would not have been any costs whatsoever excepting medication which has a standard rate for each item of medication and if you over 65 it is absolutely free. 9 years ago I went through a Whipple's Procedure at no cost to me at all.

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Whippsicle,

That's the truth. And now with Trump, healthcare looks even more unsure....

Congratulations on 9 years past your procedure! 👏👏👏👏👏 I hope you're feeling well.

Stella ❤

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9 years. That’s promising. Are you able to eat normal and does your gut feel like it’s working? Also, was your tumor cancerous and at the head of your pancreas or tail. I’m 6 months out from my surgery and have 8 more chemo treatments. All and all I’m feeling pretty good.

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Hi Keidor,

Yes the mass (as it was called) was at the head of my pancreas and about 1.25" in diameter it was benign. Basically I do eat normally but avoid spicy and fatty foods. I eat at usual times, not small meals and often as is sometimes recommended. My bowel movements are normal which is really down to the Creon. How often do you have to go for Chemo?

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I’ve got 8 treatments left. My tumor was cancerous. Didn’t spread and margins clear after surgery. If your still having issues I’d talk to a Whipple dietician. As luck would have it our vitamin shoppe in my home town has a dietician on staff (free of charge and she’s very familiar with the Whipple procedure. Just a thought. I wish you well.

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Thanks Stella. Have now had a PET/CT scan and it's clear but still looking for answers to my health problems.

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I advise you to get in on any trial that is available to you asap.it will be your best chance for survival.

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Gorinas,

Any new news on what maybe going on? I'm glad they ruled out the scary stuff.

Stella ❤

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Have you met with a dietician? Sounds like you’ve done much of what you could do. Do you eat well, work out and what about your spiritual side? Lastly did they or would they perform an endoscopic procedure ? All could be helpful. Not being a Doctor and my situation being of such that it’s quite different than yours I wouldn’t know what else to tell you.

I wish you well and will pray for you.

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