Anyone been touched by pancreatic cancer?

[thingswillneverbethesameagain]

I never even knew you could get cancer of the pancreas or what the organ did apart from supply insulin. My husband was diagnosed with Stage 4 inoperable pc last March, he died in October, 7 months after diagnosis.

Pancreatic cancer is the 5th leading cause of UK cancer death with the [b]worst survival rate of all cancers[/b] yet it receives only c1% of research spend, survival rates have not changed in 40 years! We are desperately trying to raise awareness of this relentless disease and there is an online petition to try and ensure the government discusses and increases research spend.

If anyone would please sign the petition and share it wherever you can I'd be very grateful. It closes on 8 April so only a few days left. There are currently 76,911 signatures at last look. Its a big ask but I think we can do it :fingers crossed:

epetitions.direct.gov.uk/petitions/48389

Good friend's Mum was lost to this awful disease last year. I've signed the petition before so can't sign again but have posted on my FB page for more sigs.

So sorry for your loss OP.

Complexnumber let it all out. My daughter is still struggling almost six months after losing her adored dad.

Of course he was one in a million, he was YOUR dad. Its so hard to believe isnt it?

Thanks to everyone who has signed and shared the petition. Can't tell you how much I aporeciate it :)

Can't quite believe the petition is now over 92,000. Amazing effort. Thank you to everyone who signed and shared xxx

Oh wow that is amazing! Really hope it reaches 100,00

Sorry to everyone who has lost someone to this awful disease. Have signed x

We did it! Thank you to everyone who signed and shared :D

Oh wow that is so fantastic! Well done thingswillneverbethesameagain that's brilliant news you should be really proud of what you have achieved . I've decided to try and do an event to raise some money for the charity spurred on by this thread.

Yes. My adored and much missed mum died 2 years ago of pancreatic cancer (she also had a whole heap of secondaries) after a useless idiot of a GP 'diagnosed' IBS and stuck to that diagnosis for a year. Mum was eventually admitted to hospital (by an excellent locum) with a fractured hip after her GP sent her away again with painkillers, and she died a week later. If I am every unfortunate to meet idiot GP I'm not sure I'll be able to hold back from telling her exactly what I think of her.

Will sign the petition.

sir my dad was also given a misdiagnosis of ibs. By the time he was finally correctly diagnosed the tumour was completely wrapped around an artery. He had surgery to remove it, but even with his permanently positive mindset he didn't stand a chance. I can't bring myself to consider "what if he had been correctly diagnosed earlier."

I'm so sorry for your loss zippy

I'm in 2 minds about Mum. On one hand she really didn't have a chance to process the information and didn't have to spend months waiting to die, but it would have been lovely to have had more time with her, esp. as we lived miles apart. I also wish the GP had taken her complaints of pain more seriously - she had bone metastases and her hip was fractured which meant that she wasn't able to reach the toilet in time towards the end. She was terribly embarrassed and upset by that - it makes me so mad. The weight loss was also dreadful, and she had 'that look' - what went through the GP's mind when she continued to diagnose IBS I don't know, but I did make an informal complaint to the lead GP, and he and another colleague did acknowledge failings and apologised unreservedly, which helped a bit.

understand very much where you care coming from sirchenjin and zippyswife.

I could write loads but am trying to move on.

I know things - me too . Unmumsnetty to you all

Yes, really no point in thinking "what if.." when sadly nothing can be done to change things now.

It's devastating to read of so much loss. I'm so sorry, all of you.

My mum died at 51 from this utterly criminal disease. She was told she would have six months. She barely made it six weeks. I was 29 weeks pregnant with my twins when she died. My daughters have missed out on so much. My mum missed out on so much.

Pancreatic cancer doesn't kill people, it wipes them off the face of the planet in an instant. I am utterly, utterly terrified of getting it too, and leaving my daughters adrift like I sometimes feel I am.

Oh, forgot to say it doesn't look like I can sign, being in Australia

I know what you mean Zippy - although I believe that if we can learn from the "what ifs..." then perhaps other families will be spared the misery. I know that the Mum's surgery had implemented changes as a result of the 'care' she received, so perhaps 'what if' can be turned into something positive, iykwim?

Grokette - I'm so sorry about your mum, and at such a young age. Just awful

Grokette that's heartbreaking.

My dad was young too and missed out on so much. I try not to think about it. I know what you mean about being scared of getting it too. The consulatants at the time told myself and my brother that it's a hereditary cancer and once we hit our mid-thirties (so that's now) we need to watch out for the symptoms. We also have breast and ovarian cancer in our close family too... sometimes I wonder which will get there first . Pancreatic cancer is the one I really fear though.

Sir you are right. If it can help other families be spared the misery it would be something positive.

It very definitely ISN'T always hereditary though it can be in SOME cases.

"Families with two or more first-degree relatives (parent, sibling, offspring) with pancreatic cancer." can be considered for the Europac Study into familial pancreatic cancer.

www.europac-org.eu/fpc/default.html

I know what you all mean though my children are worried about it too.

Phew - I am so glad you posted that things

Signed and hoping everyone who reads this does the same.

My friend has had successfull whipples procedure for pancreatic ca , currently well but has to have regular nano knife radiation on spots of recurrence which is only available privately.
The sunday times has started new campaign to urge NHS england to fund research into the effectiveness of cyber knife radiation as a treatment for cancers , already available in other parts of EU but only for certain cancers in UK.
nhs reform

And as a personal note my friends son is running the London Marathon to raise funds for pancreatic research
If you're interested his fund raising page is
here

that's great ggirl. Two of my children are doing the Manchester 10K in memory of their dad, not quite up to marathon running yet!

Cyberknife and Nanoknife are similar but different. A few people on PCUK forum have had Nanoknife at Princess Grace, London, the only hospital in the UK offering it, as you say, privately.

You may also be interested in this campaign saatchibill.tumblr.com/

"The Medical Innovation Bill (Saatchi Bill) will help medical doctors to innovate new treatments and cures safely and responsibly for cancer and other diseases.

The Bill will codify the existing law allowing medical doctors, clinicians & surgeons who follow the required transparent and accountable procedure, to safely provide innovative treatments, with consent, for patients.

Currently the law dictates that patients are only offered standard treatments.

Innovation requires deviation from standard procedure.

So under current law innovation is deviation.

The Medical Innovation Bill will change this status quo. ...."