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Newly diagnosed ... first post


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On 15 Nov 2018 I visited the doctor to get the results of an ultrasound. He said I had a slight dilation of the pancreatic duct but I didn't have a mass. As I was expecting him to say I had gallstones, this came as a shock. When I left the doctor I Googled it and discovered that I was at a very high risk of cancer. One search led to another and I found this website and signed up. The irony? That very day was Pancreatic Cancer UK day.

I went for more tests and was diagnosed as having inoperable pancreatic cancer three weeks ago.

I'm 56 years old. I don't have grandchildren yet. I'm nowhere near ready to say goodbye to my husband of 32 years. I hate the thought of leaving my (adult) children. I resigned from my day job in Dec 2016 to become a full time author. I've been living my dream since then but feel cheated because cancer invaded my body. I rarely drink, never taken drugs or smoked, and I've lived a healthy lifestyle. How dare this insidious disease get inside me and ruin my plans!!

All my friends say I'm strong and if anybody can fight this, I can. And on good days, yes, I do feel like this. Luckily I have very few bad days. I haven't been staged because the consultant said it was very difficult to do this. I'm actually really happy about it because I have an automatic aversion to 'end of life' conversations.

If I'm telling someone about it, I've taken to mentioning that I don't want to know if they know someone with it. Can you believe someone told me their dad was diagnosed on 4 October and died on 29 October? And I'd want to know that, why?

I saw my oncologist on Wednesday and she gave me my treatment plan. Apparently I'll be getting 6 cycles of a 3 x drug cocktail, one of them given via a Hickman line and two intravenously. I know it's palliative and not curative. I'm nervous about it. If it goes well, I'll receive a further 6. I didn't want to know what happens beyond that.

When I first had an inkling that it could be PC I Googled extensively and drove myself crazy. Now I prefer ignorance. That's my coping mechanism.

How does everybody else cope?

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Hi Finchy

Don't give up. Some may think that's easy for me to say (nobody on this forum to be clear) as I don't have Pancreatic Cancer. But my Daughter does, and everything that she suffers, we suffer with her in the only way that we can. She is stage IV with metastases to her liver. She went from a young person being troubled by RA and IBS to a person with incurable and inoperable cancer in the blink of an eye.

She was diagnosed 11 months ago at the age of 34. We didn't ask for a prognosis, we didn't need to because we quickly found out just by reading literature and searching through the internet. I don't want to tempt fate, but at the moment she is still heading in the right direction. She stays positive and gets on with her life. There is no cure, but treatment can be highly effective and prolong life well beyond what the outdated statistics tell you.

I won't pretend that I outright cope, because I don't. Not all of the time anyway. But I have come to terms with what has happened as best as I can. I try not to think too hard about the future. I stay in the present and marvel at how she is still battling on. She is on her second line treatment now, which is harsher on her than the first line treatment was. The first line treatment was very successful in as much as that it cleared her liver of cancer (temporarily) and it shrunk the primary pancreatic tumour down to next to nothing, as well as allowing some lymph nodes to return to normal. A scan after a 3 month treatment break showed signs of regrowth in her liver, but that was the only negative news.

Now she's on Folfirinox, which hopefully will carry on where the Gemcitabine & Abraxane left off. She still has the possibility of going back to Gemcitabine in the future. The first couple of days after treatment are harsher on her than the G&A were, but she carries on with great determination.

I must match that determination and support her in every possible way that I can. I'm actually quite OK if she is, and she is actually quite OK if I am. I think that's just about the only coping mechanism that we have at our disposal.

So, you may feel that there is no future, but there is. The future is the immediate future and every victory against this horrific cancer is priceless. We can win battles, even if we can't win the war in the end.

In your case, I don't know whether your tumour will ever become operable. Some certainly do after treatment (unless stage IV). You will find much support on this forum and you will get much encouragement to keep on fighting. Some of the people here have sought treatment outside of the NHS and outside of the UK. There are possibilities and there may also be hope.

You've come to the right place.

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