It's Pancreatic Cancer Awareness Month

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pottersusan

pottersusan

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Relationship to Diabetes
Type 1
As many of you know, I'm diabetic due to having my pancreas removed. I had a rare type of pancreatic cancer - a neuroendocrine tumour.

Survival rates for pancreatic cancer have not changed over the last 30 years. This is, I'm sure you'll agree, a disgrace.

Pancreatic cancer doesn't usually give rise to any symptoms or signs in the early stages. This is the main reason why it can be so difficult to detect and diagnose. As the cancer grows the symptoms it causes will depend on the type of pancreatic cancer and where it is in the pancreas. - See more at: http://www.pancreaticcancer.org.uk/...ncer/signs-and-symptoms/#sthash.ZARynJpQ.dpuf

You can read my story at:
http://www.pancreaticcancer.org.uk/...fe-stories/patient-stories/rarer-forms/susan/

My surgeon tells me I had a much more radical operation than Wilko Johnson!
 
A truly inspirational story Susan and although I know you won't want to be described as brave, it's obvious that you've demonstrated great fortitude and courage to emerge as a pancreatic cancer warrior! I'm sure you'll defy the statistical trend and well done you for battling through! I have a friend who recently had the whipple op and is now in remission for pancreatic cancer. And to be coping with diabetes and other conditions too must be very challenging.

There certainly needs to be greater awareness of this cancer so thanks for raising its profile and being a brave ambassador for it! Best wishes (from a fellow cancer sufferer...leukaemia in my case). And diabetes certainly doesn't co-exist well with cancer, they feed but antagonise each other rather too well o_O
 
Thank you for this Susan, that really is quite a story. You are inspirational to battle through pancreatic cancer and inherit diabetes as an unwanted extra. Thank goodness you have been able to use an insulin pump to help with the eating pattern you need to follow. Reading your story just now stopped me feeling a bit hacked off with diabetes and made me get on with things!

I wish you well 🙂
 
Before I knew I had cancer I lost a lot of weight as I didn't want to be diabetic like my T2 brother - I obviously failed on that front 😛 However diabetes is a small price to pay to be here - though I get hacked off with it too! I'm now on a mission to get a CGM funded by the NHS. It seems really short sighted to spend many tens of thousands of pounds on saving my life and then quibble over the odd thousand pounds to keep me fit, healthy and out of hospital. I'm off to see my MP in December to get his support. I don't think my diabetes consultant will like getting a letter from Parliament. :D

This forum has been so helpful and supportive through some very difficult times. Thank you everyone.🙂
 
Well that is an amazing story, but so desperately telling about the state of medical care. If you hadn't volunteered your tumour would you still be with us now? Would anyone have got you to the right people? Then to have to fight for a pump and a CGM is just crazy. Two of my close relatives had pancreatic cancer and it really is devastating that there has been no improvement in survival rates over the decades. The shortsighted approach is sadly all too common. I will look out for your 2016 newspaper debut when you burst that 0% 🙂
 
Wow, what a story Susan. I knew little about pancreatic cancer but I remember the Wilko Johnson story and him going on his farewell tour. Then the announcement he had the all clear after the radical surgery. Human beings are amazing creatures.
 
Wow Susan, that's a fascinating (and scary) story. Incredible that your tumour was 22cm and 5kg before you detected any symptoms - no wonder pancreatic cancer is so hard to treat. How wonderful that the consultant you contacted was able to help save your life! I hope new screening tests can be developed to pick up signs earlier so that more people can be effectively treated. How frequently do you have to eat nowadays?
 
We're exceptionally aware of it in this house and this family - my husband's dad died of it in the 1960s - before I even met his son.
 
Redkite said:
Wow Susan, that's a fascinating (and scary) story. Incredible that your tumour was 22cm and 5kg before you detected any symptoms - no wonder pancreatic cancer is so hard to treat. How wonderful that the consultant you contacted was able to help save your life! I hope new screening tests can be developed to pick up signs earlier so that more people can be effectively treated. How frequently do you have to eat nowadays?
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I eat roughly every two hours - so you'll appreciate my bg problems! 😱

They do a ct scan and a chromogranin test on me every year. Chromogranin ( a 24 hour urine collection - don't say I don't know how to have fun!) looks for cancer markers. http://www.pancreaticcancer.org.uk/ are striving to double survival rates - which says volumes about the low starting level. An easy test is desperately needed and then it should become a regular thing like mammograms.
 
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KookyCat said:
Well that is an amazing story, but so desperately telling about the state of medical care. If you hadn't volunteered your tumour would you still be with us now? Would anyone have got you to the right people? Then to have to fight for a pump and a CGM is just crazy. Two of my close relatives had pancreatic cancer and it really is devastating that there has been no improvement in survival rates over the decades. The shortsighted approach is sadly all too common. I will look out for your 2016 newspaper debut when you burst that 0% 🙂
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I made my newspaper debut on the front page of my local paper several years ago, and since then I've been on the local news twice! once in the studio and once at home - which involved some truly frenzied tidying up!
http://www.bbc.co.uk/news/uk-england-dorset-24764373
this snippet took nearly three hours to film!
 
pottersusan said:
I eat roughly every two hours - so you'll appreciate my bg problems! 😱
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Gosh yes that must be tricky. We have enough problems with my teenage son's constant snacking! Do you have to wake up and eat something during the night as well?
 
Not usually, though I do take a midnight feast to bed with me just in case :D
 
That's one hell of a story, Potter Susan! Thanks for sharing it.
 
My surgeon reckons I had had it for 20 years before I had any signs and symptoms! and even then it was just a 'bit of a stomach upset'.

"Any symptoms people do have can be quite vague and may come and go at first. An example is abdominal pain, which may start off as occasional discomfort before becoming more painful and more frequent. The symptoms can also be a sign of other more common illnesses such as pancreatitis, gastritis, gallstones or hepatitis. This means that people may end up seeing their GP several times or being sent for a number of different tests before pancreatic cancer is even considered.

It is important to remember that any of the symptoms described here are common for lots of illnesses and may not be a sign of pancreatic cancer. But if you have persistent unexplained symptoms it's important for your GP to refer you for tests to explore what is causing them. It can help to note down the frequency of your symptoms and mention anything unusual you are experiencing, even if it seems unrelated. If your symptoms get worse or you develop any new symptoms suddenly you should always get in touch with your GP."

- See more at: http://www.pancreaticcancer.org.uk/...ncer/signs-and-symptoms/#sthash.RQjh3UoF.dpuf
 
There are numerous types of pancreatic cancer.

http://www.pancreaticcancer.org.uk/...pancreatic-cancer/types-of-pancreatic-cancer/

Unfortunately they rarely have a positive prognosis.

In hindsight (wonderful stuff - I wish I could bottle it and sell it!) my main symptom was a lot of headaches - which I and my doctor put down to stress. Since my operation, 4.5 years ago, I have had one headache and that was after being pumped full of a nasty drug!
 
Just to echo the others with regard to your story, inspiring and thought provoking. My dad was diagnosed last August at the age of 78 and was admitted to Addenbrookes hospital. We watched him go from being a fit 16 stone 6' 4" active pensioner down to 11 stone in a very short space of time. His kidneys shut down a couple of times and he was in intensive care on dialysis when that happened but he kept fighting and was able to get well enough to have the 'whipple' procedure. Last month we celebrated his 80th birthday, he's not diabetic and looks really well. We all know the post op survival rates but as he says, everyday now is a blessing. As for making people more aware and improving diagnosis I agree much more needs to be done. I always think of the late, great (in my humble opinion 🙂) Bill Hicks who was lost to this terrible disease at the age of just 33.
 
Pancreatic cancer has the lowest survival rate of all the 21 most common cancers, with just five per cent of people in Scotland living for five years or more after diagnosis, and over 700 people a year in Scotland dying of the disease. Yet across the UK, just 1.4 per cent of cancer research funding is directed towards the disease (1). Scotland is currently the only part of the UK whose government is specifically co-funding research into pancreatic cancer along with a charity. - See more at: http://www.pancreaticcancer.org.uk/...round-breaking-research/#sthash.3o16iPKk.dpuf
Hurrah for the Scottish government! 🙂
 
Thankyou for sharing your amazing story Pottersusan. And I hope the powers that be see the sense in giving you a pump and CGM to help make your life easier.
 
Both of my parents had pancreatic cancer. It was suspected in my mother as she had acute pancreatitis for a number of years but they never opened her up to confirm this. She died from a different autoimmune disease. My dad died from cancer of the head of the pancreas. He suffered a lot of pain but of course being a man he did not go to the doctor until it was too late to try anything. Quite likely it would have been to no avail. My GP refused to listen to my concern when I developed T2 diabetes in 2012. He said that it is not inherited and I have nothing to worry about. Hope he is right! Thank you for sharing your story Pottersusan. 🙂
 
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