Latest official statement from Ali Stunt at Pancreatic Cancer Action

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It has been an unbelievable week of mixed emotions for all us at Pancreatic Cancer Action. When we devised the idea of the advertisement, based on my own experience as a pancreatic cancer patient and the other sufferers I speak to, we knew that it would create some noise but we also knew it was what we needed to do to ultimately create awareness of a cancer that currently has a shockingly low survival rate of only three per cent. This has not changed in 40 years.

Millions of people are now aware that weren’t a week ago. And they’re now becoming aware of the symptoms. We have seen in the last few days an astonishing uplift in web views and a spike in views of our symptoms page. Our aim is to save lives and that is done by early diagnosis, which can only be achieved if people know what to look for.

We are hearing lots of feedback from other cancer sufferers who are very upset by the campaign. We can only apologise for any hurt that the advert might cause them at first glance. This is not the intention. What we are trying to do is create a discussion and a debate to make people realise that when faced with a pancreatic cancer diagnosis and a survival rate of only three per cent, it is not unreasonable for a cancer patient to wish for a significantly better chance of staying alive.

We have also heard from many other non-pancreatic cancer sufferers, many of whom are suffering from other forms of cancer, who support our campaign and have done so publicly on the TV and radio this week.

I believe we’re all campaigning for the same cause – to improve everyone’s chance of beating cancer. We just had to shout that little bit louder to get heard.

21 comments

  1. I have found it to be an extremely emotive and emotional week but I am proud to be in the front seat of this campaign. The feedback I have had has been outstanding. It has clearly been upsetting and shocking but when given the opportunity to explain why it needed to be i have had 100% support from hundreds of people. I know that by reaching out with this campaign, lives will be saved. I have to make my experience of having this disease worthwhile. I am not going to endure all the hideous aspects of it without making a difference to the terrible survival rates. Well done Ali and the team. You are my inspiration and I am honoured to know you all.

  2. A pretty measly apology to be honest, that smacks of damage limitation exercise. Nothing wrong in campaigning in favour of additional funds and research into pancreatic cancer. Nothing wrong with a campaign that draws attention to the different survival rates of it and other cancers. Massive problem with the way the message was conveyed, the imagery and language used. If it hasn’t already been done, the ad must be withdrawn immediately and an absolute and unreserved apology issued, not only to cancer sufferers but those of us who are left behind, in fact anybody who found the ad so very insensitive and offensive.

    1. Hi Robin,

      We are sorry that you have been so offended by the advert. Please remember these are real patients who just want a better chance of survival. In no way are the ads suggesting that any other cancer is easier, it is purely the fact that they want a much better chance of survival.

      We do all types of work campaigning for additional funds and already fund research into early diagnosis.

      Best wishes,
      Ali

  3. I have been both encouraged & also very angry at the press the advert
    has received. Many like Best magazine understood what it was aimed at, and also thought the comments made by Sky’s Andrew Wilson and guests made about Kerry’s story, his line of “she has Pancreatic Cancer so surely she’s entitled to say what she wants” was totally correct. I am angry with what I can only class as “lazy” journalism. It sadly shows that despite the Levinson enquiry the British press still just goes for the “Sensationalist” headline without putting in the hard work to research the story. I mean I’m not the brightest in the world but I understood the meaning of the adverts, ok maybe as I’m involved in a way with raising awareness perhaps helped, however even though I lost my Mum to this evil type of Cancer, which took her life 5 weeks from diagnosis, I would never criticise ANY other cancer charity for highlighting their campaign. Every Cancer is a dreadful thing for anyone and their loved ones, and if ever I’m unfortunate enough to be diagnosed with Cancer I sure as hell hope its one that at least gives me a fighting chance of beating it. Keep up the good work Ali and everyone else, your an inspiration to the rest of us, and makes us even more determined to make a change.

  4. Pancreatic cancer and metastatic breast cancer share some things in common.

    >Poor median survival. Median survival for metastatic breast cancer is 2.5 to 3 years. Ultimately no one “beats it.”

    >Woefully underfunded research. Less than all 5% of all cancer research funding is allocated to metastatic breast cancer. (ALL metastatic cancer research is underfunded.)

    >Limited surgical options. Metastatic breast cancer spreads to bone, brain, lung and liver. It can’t be cut be cut out.

    When you quote a five-year 87% survival rate for breast cancer, please understand the context.

    >Those statistics are for early stage breast cancer; not metastatic disease.

    >People die of metastatic disease, not primary breast cancer.

    >Survival, mortality and incidence are not the same.

    >Mortality numbers tell the story more precisely than survival numbers. Breast cancer kills 40,000 annually in the US and half a million worldwide.

    >Screening skews the survival numbers. The more we screen, the more we diagnose and treat people with breast cancers that would not have been a threat to their lives (some DCIS, other slow growing invasive breast cancers, and others that are dormant or regressive); so it looks like survival for early stage breast cancer is 98 percent in the US.

    >But this is only a 5-year survival number—and includes the 20-30 percent of people who will have a metastatic recurrence and die of the disease later.

    >The incidence of stage IV breast cancer—the cancer that is lethal—has stayed about the same; screening and improved treatment has not changed this.

    Suggesting breast cancer is “enviable” unfortunately may give people the idea that everyone who has it is cured. With these “great” numbers in mind, perhaps people will be tempted to skip their regular doctor and screening appointments–why worry? By your campaign’s reckoning this is a “good” cancer.

    Early detection is certainly helpful, but it is NOT a breast cancer cure. Indeed, early detection carries its own set of complexities–over treatment, a false sense of security, etc. (See http://mbcnbuzz.wordpress.com/2013/04/27/our-feel-good-war-on-breast-cancer-mbcn-responds/ )

    Finally, I concur with the American Cancer Society’s Otis Brawley: “Basic scientific research, some of it not focused on a particular cancer site, has given us so much insight into cancer that we can actually see a day in the very near future in which it doesn’t even matter where the cancer started. In other words, the clinician is not going to be interested in whether it’s lung cancer or breast cancer or colon cancer. The significant questions for treatment will be: Which genes are mutated? Which genes are turned on? Which genes are turned off? Which genes are amplified?”

    Please no more Disease Olympics. Funding the best science helps us all.

    Katherine O’Brien
    Board Member
    Metastatic Breast Cancer Network
    http://www.mbcn.com

  5. Whilst it is right to raise the profile of the disease, there is a danger of anyone with stomach ache believing that they have pancreas cancer and pancreas specialists/hospitals being overwhelmed because of this. This possible situation could potentially delay anyone who really has cancer receiving timely treatment.

  6. Shouting LOUDER doesn’t mean you’ve shouted more effectively. Dropping a bomb to start a conversation and then failing to engage in that conversation (and instead, leaving your supporters who have no idea how to interpret medical information much less statistics) is a giant fail. Social media is for a TWO-WAY dialogue. Not a giant curtain for you to hide behind while allowing a few people who barely understand Twitter to speak and bully other cancer patients on your behalf. You have no credibility and this only proves there is an underlying agenda here. Sadly, medical science for pancreatic cancer isn’t as advanced as it is for other cancers. Much of this has to do with the BIOLOGY of the cancer, not the amount of money thrown at it. It’s shocking that you would create such a deep rift in the larger cancer community in attempt to raise your own visibility. I’m sure this comment will not be posted along with others that have been suppressed this week.

  7. Another, of many I gather, mails deleted. So what emotions I wonder will be provoked by a campaign to raise awareness of the many more women who die of Breast Cancer, featuring a woman facing a terminal BC diagnosis, bearing the scars of mastectomy as well as bald, who says “I wish I had been diagnosed with pancreatic Cancer? It really is a zero sum game. We are all in it together against this bugger. How sad you had to make it so petty and nasty……..

  8. The part of your statement where you say “We just had to shout a bit louder” that’s exactly how I feel when my wife passed away, I kept thinking should I have seen something or gone to the doctor with her to do a bit of desk banging myself or was it all inevitable, sadly the symptoms were masked by gallstones and maybe the doctor would have seen that as the cause. But now with your advert I see that our voices can be heard and things can change doctors can do a check for PC as a routine for patients presenting with certain symptoms if the patients know what to look for they will go earlier and as with the cancers with a better prognosis the trend although slow will be upward instead of stagnant.
    All the best in your efforts Ali.
    Sent in memory of Josi

  9. Congratulations Ali in presenting such a strong message about the plight of pancreatic sufferers, and in standing up in defence of your position against many attacks in the media. Now we must re-focus the message – the reason the survival rate is so poor, is that diagnosis in most cases is too late.for life-saving surgery to be carried out. So we need a huge increase in research effort, working towards a reliable test to detect the presence of the cancer in the pancreas before it is too late. Let’s keep up the pressure!

  10. In reply to Stuart Wood’s comment;

    I wish I had gone to my GP with my stomach ache sooner and made more of a fuss. I had a history of PC in my family too. My subtle symptoms were mis diagnosed although it was clear I was generally not well. It took two months to get a diagnosis. A relatively short time in the history of PC patients. With hindsight and the awareness of the symptoms I could have almost diagnosed myself several months before. Stuart do you have any idea how many patients are diagnosed too late. This includes me and my father (28 years ago). Nothing has changed for 40 years. PCA are doing amazing work, raising awareness of the symptoms, getting the message out there, saving lives. It’s dangerous to suggest that people would unnecessarily visit their GP or the hospital. There are millions if time wasters in GP surgeries that’s always going to be the case for any amount of ailments but early diagnosis is crucial. Go to your GP with stomach ache if it’s not usual for you.

  11. This is the 2nd submission of this reply, the first being Sunday which was obviously sent for moderation prior to the comments you have posted from Monday 10th?

    Sadly I think you will find that the increase in traffic to your website is as a result of many people incensed with your campaign looking at the blog you refer us all to when we send a complaint.

    You have created a discussion but for all the wrong reasons, you have alienated yourselves from other cancer charities and hurt beyond measure other people affected by cancer whether that be as sufferers, family or friends.

    Your poster is unclear as to the reason why people are ‘wishing’ themselves to have other cancers, it draws no comparisons and puts nothing into context so much so you are having to justify it regularly.
    There is not one cancer diagnosis that gives a 100% guarantee of survival so to wish you had another cancer is appalling. I am one of the 33% of cervical cancer patients with a terminal diagnosis, I find it hard to believe that Penny or anyone else would ‘wish’ to swap her diagnosis for mine and yet that is what is displayed on your poster.

    Very personal and heartfelt complaints are being to you Ali Stunt and you are sending out adapted standard emails as your response, you brought this campaign into lives the least you can do is answer our questions and respond in full. I’m afraid that none of the people that I have spoken to who have received the same standard email stating ‘ we do not wish to burden you with our rationale’ are impressed either.

    I truly hope that the ASA formally look into our complaints and uphold them.

  12. Hello,
    I won’t shout and scream like some people (twitter trolls) are doing about your new campaign, tell you its wrong or whatever else it is everyone is saying about it. The campaign has obviously got the feedback you wanted good or bad and has certainly created awareness of pancreatic cancer, its symptoms and the life expectancy of anyone with the disease. I actually know first hand how serious it is as my grandad died from this disease years ago. BUT i can’t sit there and say this ad did not upset me when i first saw the words “I wish i had breast cancer”. I have no doubt that Kerry meant these words and a small part of me can understand why with what she is going through but in hindsight shouldn’t she have said “i wish I was fit and healthy”? I am sure inreality IF Kerry had breast cancer she would also be pretty upset about it and not wish she had that either! Unfortunately having BC doesnt guarantee life, it may have more awareness around because it is that little bit more common therefore is getting more funds to research but these charities should be working together and not against each other! BC or any type of cancer hasn’t been cured so why is one better off than the other?! Can’t we all work together and one day have a cure for them all (in the perfect world). My mum passed away in May 2013 after only 4 months of being diagnosed and guess what… she had breast cancer! She was told at the beginning how successful the treatments were for BC and how great life expectancy is so although shocked, angry and sad we were all convinced she was going to pull through. Not the case, Instead the cancer spread like wildfire and we ended up finding out my mum was going to die ONE WEEK before that fatal day! I think this ad, although “effective” is very insensitive on people like me who have lost loved ones to these diseases you make out are not as serious as the one you are raising funds for. My heart goes out to everyone on your campaign and their families, and any other cancer sufferers out there. And i really hope you do raise more awareness and funds for this extremely important cause. I just wanted to let you know that i feel perhaps you could have achieved the exact same goal with a more thoughtful campaign for everyone.

  13. I fully understand the plight of pancreatic sufferers and their families. I fully endorse the belief that more research and funding should be ploughed in to prevent late diagnosis and promote longer survival. I even understand comparing survival rates with other cancers… however I cannot understand how you could be so ignorant insensitive and tactless in promoting the ” I wish I had BC CC TC “campaign

    I was diagnosed with breast cancer at the age of 39. I had 2 children under the age of 5 and two teenagers and was working full time as a nurse.

    I remember in total clarity being told ” we can treat you but we cannot guarantee a cure”. My cancer had spread to my lymph nodes, I had months of chemo, lumpectomy, mastectomy months of radio, ovaries removed, early menopause, reconstruction with implant, implant failure and removal, 1 year of a gaping hole in my chest, DIEP flap reconstruction where my stomach fat and muscle was cut away and tunnelled inside my body and out through my chest to form a sort of breast so I have a scar hip to hip as well as scars all over my chest, my navel has been been moved and my nipple surgically created and then tattoed… but hey ho I am lucky because I had breast cancer!!!!! My children still suffer from anxiety and separation issues as they have grown up with me in and out of hospital and the real possibility I may die, I still wake up every day and the first though on my mind is cancer. The longer I survive the more I worry that my time is running out and I am still a young women. my daughters face their own worries that they may have to lose their breasts… This is not a cancer anyone should wish to have… no cancer is….I am happy that I am alive and I thank God I am alive but I shouldn’t be made to feel guilty for that or thankful I had breast cancer.

    No matter what you say your campaign meant, the stark fact is it clearly stated ” I wish I had BC CC TC ” and this cannot be condoned.

    Be careful what you wish for it may come true and believe me that is one wish you wil wish you had never wished.

  14. Cancer is the universal enemy and this is a hard hitting campaign, at last PC is being discussed. Rightly or wrongly the campaign upset bereft families and survivors of all cancers, but you survived because all the other cancers are up in your face, funding was granted, research undertaken, prognosis improved, lives extended, precious moments shared. My beautiful mother was diagnosed a year after her first surgery to remove an obstruction of the bile duct, a Dr said they had removed a pea sized tumour and that was that. A year later, with no treatment after surgery, with her stomach expanding, eventually not even being able to swallow anything, even her own saliva, my father and I met her in outpatients as she was an inpatient on the ward. The consultant asked only to see my father, he was in there for 5 minutes, he came out and told my Mum and me that there was nothing that they could do and she was discharged to go home to die. She was dead within two weeks, I’m sure if she was brought before her maker and he said ‘ Ok Jean, I’m going to give you cancer, which one would you like? Would you prefer one where there is practically no chance of survival and is really difficult to diagnose, or would you prefer one where you might not survive, but then again you might have a few extra years with your family, what do you think she might have said?
    I’m glad that this campaign has caused an uproar, I’m sorry it has offended though, but we must increase awareness, that way if you are diagnosed with PC then you will have the chance to start treatment early and be able to live a little longer, let’s face it, and with all due respect, the survivors among you have had that opportunity already, where as PC sufferers rarely get that opportunity do they?
    By the way both my aunts died of BC and my grandfather died of stomach cancer, my mother wasn’t even 50, her granddaughter never new her, she wasn’t at my wedding, she didn’t see me become successful through hard graft and determination and there isn’t a day goes by when I don’t think of her. So don’t get upset survivors, you are the lucky ones, you’ve had the chance of treatment that she and lots of other PC sufferers have been denied, because diagnosis was. Too. Bloody. Late.

  15. WAKE UP people! Pancreatic cancer is absolutely brutal, ignored, misdiagnosed and largely unheard of. Kerry and everyone else involved have every right to have their own opinion. My beautiful mother suffered both breast cancer (6 years before her PC diagnosis) and pancreatic cancer and she considered breast cancer “a walk in the park” in comparison – sadly my mother isn’t here to say this herself so hear it from me – that is how she felt. That was her opinion, which like Kerry, she is totally entitled to have! Of course she suffered with breast cancer and it chaned her as a person, just not in the same way that pancreatic cancer did.

    Why not instead of focusing negative attention on Kerry and other spokespeople of the campaign don’t we focus our attention on the medical profession and it’s herrendous misdiagnosis statistics. Why doesn’t everyone angered at this campaign take that anger to a productive place and demand a proper attention and care from doctors?

    All cancer is terrible and my heart goes out to everyone affected. I hope we can all get to a place where there is a bit more empathy and understanding.

    Excellent job to the team at PCA – I’m so glad that you’ve let the voice of sufferers be heard- keep up the good work!!!

  16. I am so proud that you are taking a stand about pancreatic cancer. My father passes away after 18 months of bile duct cancer. My opinion is why does so much money go towards breast cancer-seems like all we hear about. When will all other cancers get researched where we could possibly save who knows how many more lives a year. I would be willing to help your campaign in any way! Knowing he had calengiocarcinom I then worry about myself, my brother and out kids. Something has to be changed as far as research for all other types of cancers! My son is in college and he of course angry about my fathers death that he wants to find a cure! I wish he could!

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