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Pancreatic Cancer E-Petition

We need 100,000 signatures by 14th November 2012

 “It is a scandal that almost 97% of people diagnosed with Pancreatic Cancer die within 5 years. 22 people per day die from Pancreatic cancer. Earlier, clearer diagnosis would reduce this.” – Ken Crawley

Ken Crawley has set up an online petition in order to get pancreatic cancer diagnosis debated in Parliament and needs 100,000 signatures by 14th November 2012 for this to happen.

Ken has written some information below explaining his motivation to do something about the poor survival rates for pancreatic cancer. Please sign the petition if you feel the same and forward this to anyone else you feel will be supportive or use any of our online and offline promotional material available here. Thank you.

 Ken says… “Two years ago, I hadn’t even heard of Pancreatic cancer. Then a life-long friend lost his wife to the disease. More recently a dear friend told me that she lost her husband also to Pancreatic cancer. 

Pancreatic cancer is the 5th leading cause of cancer death in the UK. Pancreatic cancer has the worst survival rate of all cancers. 5-year survival is only 3%. This figure has not changed in over 40 years while deaths from many other cancers have declined. 

Pancreatic cancer could be termed ‘The Hidden Killer’. Many of its symptoms mirror other less critical illnesses and therefore GPs often do not realise their significance. Symptoms can include jaundice and diabetes and GPs may first treat these resulting in time being lost before the correct diagnosis is reached. By this time it can be too late to treat the cancer. This happened with both of my friends. 

I have decided to try and change this and I have set up an e-petition online at epetitions.direct.gov.uk/pe… 

The aim is to have Pancreatic Cancer diagnosis debated in Parliament. To achieve this 100,000 signatures are needed. Nearly 300 signatures are needed each and every day to achieve this. The petition is available until 14 November 2012, which seems a long time but it will soon pass by. Pancreatic cancer diagnosis and treatment is a lottery. “

Show your support and spread the word, by putting up posters or if you have a website, by using code provided to display a banner. All promotional material is available here.

58 Responses to “Pancreatic Cancer E-Petition”

  1. Stewart Ibbotson says:

    When it is diagnosed early enough Cancer can be treated successfully. The NHS at it’s best is working and must be given the finances to continue. After early diagnosis at Scarborough and a Whipples operation at Castle Hill. I am Living proof!

    • karen stages says:

      Hi Stewart,
      I also had the Whipples operation in April 2008,at that time i did not realise how serious my condition was,however,after reading several articles regarding Pancreatic Cancer i now realise how lucky i am to still be around.
      I now experience severe stomache cramps on a regular basis,problems with my digestive system and bowel problems etc.
      In December 2011 i was taken into hospital with severe stomache cramps and had to placed on a morphine drip for the pain.however this is better than the alternative.
      How have you been coping ?

      Charles Stages

  2. Adele Pickering says:

    My husband died of Pancreatic Cancer within 2 months of diagnosis in May 2010.

    Unfortunately he was told by his GP after visiting him 4 times that it was infected Gall Stones.

    It was only when we went to A&E and he was admitted, that various scans and tests were

    carried out and Pancreatic Cancer was discovered.

    People who are diagnosed early enough for treatment, are the lucky ones.

    Please sign the e-petition, so GP’s are more aware, more money is available for research

    and therefore enabling more dare I say it LUCKY ONES !! to have a fighting chance.

    I only wish my Husband Gray could of had this chance, so please please help xx

    • Linda Brearley says:

      I too lost my husband just a week ago aged 68. He too was told he had gallstones. He had been backwards and forwards to our GP since Christmas. It wasnt till I took him in as an emergency that they realised it wasnt gallstones but in fact pancreatic cancer which hd already spread to his liver. He died 3 weeks after diagnosis. I am numb at the moment and crying constantly. I totally agree that they should offer tests, the same as bowel cancer, breast cancer etc. Please tell me it gets easier

      • Adele Pickering says:

        I have only just read your comments Linda, I am so sorry for what you are going through at the moment.
        In my own personal experience it is getting easier but I had lots of support from Cruse Bereavement Care, and still have from family and friends. Please take what ever help is offered.

  3. Ken Crawley says:

    Stewart Ibbotson has demonstrated that Pancreatic cancer can be successfully treated if promptly AND correctly diagnosed.

    Since starting the e-petition I have spoken to quite a few people who have lost loved ones to this dreadful disease. Sadly the recurring experience has been similar to that described by Adele Pickering.

    Please sign the petition if you haven’t already done so AND please text, phone, email and ‘tweet’ everyone you know and urge them to do the same (and to pass the message on to everyone they know too). We desparately need to change the status quo. To stand any chance, we need to get 100,000 signatures by 14 November 2012. At this moment we have 593. That is just short of two day’s worth. We now need about 320 signatures a day!

    Please help many more people to have the same outcome as Stewart and make Adele’s sad experience a thing of the past.

    Ken Crawley

    • kim gravett says:

      my dad has just been told he has cancer of the pancreas and we are waiting to start treatment, i have watched my brave dad loose weight and struggle to eat yet all the time he is trying to fight this hidden killer which it is
      we wish you well in your petition

  4. Stewart Ibbotson says:

    Thanks for your comments Ken. Yes early diagnosis is vital, mine quickly changed from Gall-stones to Obstructive Jaundice by a Consultant at Scarborough this saved valuable days in the search for a cause. During my stay in Castle Hill after my operation I was visited by many Consultants using my case to educate young doctors in the signs and symptoms of Obstructive Jaundice. A sign of Cholangiocarcinoma(Bile duct cancer). Early detection of ALL Cancers is very important especially the less obvious ones. The fact that an ERCP found the lump means anyone with Sign’s and Symptoms of Jaundice should have one…

  5. Dennis Helsby says:

    We are our own best doctor, we know when things are not right. I had a Whipple Operation in October 2007 and although I have side affects that render me out of action when they happen, it is still better than the alternative. Men in particular have to go to their GP at the first sign that something is wrong and if you are not satisfied get a second opinion. You should also speak out and tell the world and his dog what happened to you regarding the symptoms you have had and make more people aware of the signs of Cancer. You should seriously consider joining a Clinical Trial if you are offered one, I did and that also helps to publicise your condition and helps tremendously in the research.

    • Adele Pickering says:

      As I stated before my late hubby went to his GP 4 times!! You are lucky that you had a Dr that was on the ball – so to speak !! and could have treatment !! That is why the petition is so important, so more Doctors are aware of the symptoms and people can get the help they need and deserve.

    • Ken Crawley says:

      The phrase ‘post code lottery’ is regularly applied to the NHS and it certainly appears to be the case with Pancreatic cancer. Dennis is right in suggesting men need to go to their doctor at the first sign of anything wrong, but this is something that men are not very good with whatever the health risk.

      The facts speak for themselves – 3% survival rate. Late diagnosis often due to the symptoms of other conditions which delay treatment and early death as a result. Clinical trails are valid, but there has to be an early correct diagnosis in the first place.

      Nonetheless, Dennis Helsby’s experience like that of Stewart Ibbotson are encouraging and it should be the norm rather than the exception.

  6. Ken Crawley says:

    Yesterday the petition reached 1,000 signatures, so we are 1% of the way to our target, please remind all your friends, neighbours and colleagues about our petition.

    Pancreatic cancer will claimed the lives of over 1,500 people since the petition was launched in November.

  7. robert says:

    I lost my mother to this terrible cancer in 2011 23days after being told what she had. and the worst thing about it is more people will be lost also because of the lack of funding and research into Pancreatic cancer.

    I sign here today to give others HOPE and a FIGHTING CHANCE

  8. Diane Jackson says:

    My dad died in 2005. He had been seem many times by the gp about gall stones but this all turned out to be pancreatic cancer which by the time it was diagnosed has spread to his liver. He only lasted one month after diagnosis.
    We need more research and more awareness especially by GPs

  9. Clare Gosney says:

    My Dad died last May he had no chance of survival he might aswell have been shot in an execution this needs to change !!!!!!!!!!!!!

  10. I lost my friend on xmas day with pancreatic cancer, she was only 50 her name was sue, she had so much to live for,

  11. Ken Crawley says:

    It’s been a while since I have been able to check in here again. Thank you Robert, Diane, Clare and Eileen for your posts. Your individual experiences are very similar to many I have been told about since starting the e-petition – short survival period, incorrect diagnosis and as Clare suggests, Pancreatic cancer is equivalent to a death sentence.

    KenC

  12. Dawn says:

    My dad has just been diagnosed after seeing three different GP’s and being in pain for the last two months. Reading all the symptoms of PC he has them all except the jaudice so why has it onlyjust been diagnosed!!!!

  13. Joan Maynard says:

    It is not only the NHS ,that miss diagnose, my dear late husband,was being treated privately ,and was told it was. Irritable bowel syndrome’ the weeks went by missing valuable time,until they diagnosed Pancreatic cancer , with only months of precious time to live, he was. Only 58 yrs old ,so tragic , Joan.

  14. Adele Pickering says:

    As Robert said, let’s give other’s HOPE and a FIGHTING CHANCE !! Please sign the e-petition and pass on to everyone you know.
    My hubby Gray, like so many other’s had none.
    We can’t let this dreadful illness, continue to take our loved ones so quickly and in such a devastating way.
    My friend Ken is trying so hard to get to that magic number 100,000 !! Help please !! x x

  15. I was diagnosed in oct last year after 9 months of going to doctors , hospital , kept telling me it was my colitis , but i knew it was’nt , by the time they dicovered it , it was too late , i was given a terminal prognosis ……… my gp and specialist apologised for not taking more notice of my symptoms ……. not good enough , this is peoples lifes they are gambling with . My dearly loved brother passed with it almost 3 years ago , i kept saying to my doctors that my symptoms mirrowed his , only to be made to feel paranoid . Please for the sake of others SIGN THIS PETITION and lets save our future generations .

    • Ken Crawley says:

      Caterine, I’m so sorry to hear of your situation. This is so scandalous. Why can’t GPs take this seriously? Surely it should be routine to test for PC at the same time as testing to make sure their diagnosis – whatever it happens to be – is correct. I hate to talk about cost at a time like this, but It would surely be cost-effective for the NHS in the long run. MORE importantly, the personal cost of mis-diagnosis to you and many hundreds of others placed in the same position, not to mention all of your loved ones to is quite simply incalculable.

      I realise this is a difficult time for you, but thank you very much for sharing your experience.

      KenC

  16. Adele Pickering says:

    Interesting article re Diabetes drugs, my hubby Gray had been on Metformin for about 3 to 4 years.In the last few month’s before he was diagnosed with PC, his dosage was doubled to 2 tablets a day !. Graham alway’s thought he did not have Diabetes as he did not have any of the other symptons eg. thirst, blurring vision, weight loss etc.When he was told he had Pancreatic Cancer,he actually said to me that when they diagnosed Diabetes it was probably the start of PC. I am sorry but a lot of GP’s take the easy option and do not look for other answers, he never blamed his GP infact Gray felt sorry for him!!
    I do I’m afraid, that’s why more training for GP’s and more research needs to be done in being able to detect PC earlier.

  17. kelley says:

    my heart goes out to everyone , i lost my mum Janet to this hideous disease august 11th 2011 within 7 weeks of being diagnosed , i dont know how long she had it for but do know in the december before i begged her to go to doctors as she was always tired and weak and losing weight as she had no appetite , i knew something wasnt right how i wish i had pushed harder , the doctors just put it down to stress as my father was in hospital and my brother battling leukemia so we accepted this , then a few months later put her on anti deppressants saying this was the problem , but as we now know most symtoms do not show till its too late , my mum became seriously jaundiced in june by then it was too late , things really need to change more has to be done i will help pus for signatures and bring awareness to this cancer in any way that i possibly can xxx

  18. It’s heart-wrenching to read people’s experiences, remembering the nightmare of helplessly watching my dear dad Robert’s deterioration in the months following his [August 2006] PC diagnosis. By late April 2007, after rounds of chemotherapy which made him frail and sick had been stopped, he’d become mostly bedridden and barely eating. I still fight back tears thinking of the Sunday I was at my parents’ for the usual family meal and went upstairs to visit with Dad in bed. He was actually sitting up & looking more alive than usual, eager to hear all about the cancer remedies he knew i’d read about, then listened raptly as I explained the details. My [desperate] optimism must have been catching: at dinnertime, he rang downstairs for a second piece of pizza and more salad to be delivered up to him, and finished those off too. Later on, when I went up to hug him goodbye he was still bright-eyed, telling me he wanted to try the diet I’d recommended.
    Even in hospital, where he was transferred not long after that, he managed to take enjoyment where he could – eg. the smells of certain flowers/fruits, requesting they be brought up to his nose so he could breathe in their aroma. He died there on June 1st 2007, a shockingly diminutive ghost of his former laughing, lively self.
    I found your site as I was Google-mapping around Haslemere in ‘street view’, re-living visits to my Uncle David [Dad's only brother], Auntie Wendy and cousin James’ home ‘Stedlands’ – not far from where you are, on Scotland Lane – and thought The Crest Lodge looked interesting~! Turns out it’s much more than that…
    I’ll definitely do what i can to publicize this worthy cause and help make this petition successful. Good luck and best wishes to you aLL! XO

  19. Carol Watts says:

    My father died of pancreatic cancer many years ago and the first we knew of his illness was when he became jaundiced. By that time, it was too late! We watched him go from a healthy 11 stone to little more than 6 stone in a matter of months.
    I heard also of the plight of Wendy through a relative of mine who knew her well and was told what a wonderful person she was – spending her last months crusading on behalf of other pancreatic cancer sufferers.
    I whole-heartedly agree that there is a need for the publization of this condition and willingly add my name to the e petition trusting it will be a success.

  20. Janet Wynne says:

    I sign this petition in memory of my beloved mother who lost her 2 year battle with Pancreatic Cancer on 12th July 2011 after having a total pancreatectomy and 2 rounds of chemotherapy

    Please sign this petition and let’s prevent others from loosing loved ones to this evil disease

  21. Ken Crawley says:

    I’ve just learned that someone else in my circle of friends has been diagnosed with Pancreatic cancer and given 18 months (yeah!) please let us succeed.

  22. Chris Bertam says:

    I’m trying to help in anyway I can my mom found out she had it in oct 2010 was a very strong fighter fought so she could see me get marriend but a week after the wedding this past Friday she passed away from this horrible cancer.. If there’s anyway I can do anything i would love too these people need a better chance at surving and earlier ways to find what’s wrong with them. God bless

    • Ken Crawley says:

      Hi Chris, we’re grateful for all the help we can get. If you can encourage even just one more person so sign the petition that would be great. Quite a few people are now emailing, ‘tweeting’ and messaging everyone they know (and quite a few they don’t) to spread the word about the petition.

      I’m sorry to hear about your mum, but I’m sure you made her proud on your big day.

      God bless.

  23. karen stages says:

    My Husband was diagonosed with pancreatic cancer and underwent surgery lasting over 12 hours on the 16th April 2008.Following the surgery he has been left suffering with severe stomache cramps on occasions,problems with his bowel and also digestive problems.
    He had the whipples operation,fingers crossed to date he is still alive and hoping for the best.

    Karen Stages

  24. Keith Harding says:

    I am lucky. I had a what I thought was a ‘night after’ tummy, but it stayed all day. I was in Australia, went hospita lto be checked. They gave me a blood test and an xray. They kept me in overnight given the much needed scan and ultra sound.
    I will never forget that afternoon in August 2008 when I was told the news. We had caught it in time and back at home I had all but the head removed as well as my spleen.
    All my freinds tell me that I was lucky that I fell ill in Australia.
    After more than 3 years, at a check – up, they have found new activity in some lymph nodes.
    I have to wait three months for another scan, before they will take action!
    I had been diagnosed type 2 a couple of years earlier – was this the start ? Should all new type two have a scan?

    • Ken Crawley says:

      Thank you for sharing your positive experience with us. I just shows that there can be a positive outcome and this is what we are campaigning for. It will give hope to people like Karen (above), encouragement to those of us who feel that the petition and the whole campaign is worthwhile and no room for excuses to those in the position to change the status quo.

      I hope the good news continues for you.

  25. Adele Pickering says:

    Keith, I think it dreadful that you have a 3 month wait for a scan!! I believe you are referring to type 2 diabetes? If so as I have stated before, in my late hubby Grays case when he was diagnosed with diabetes, was it the start of PC.
    I wish you all the best and please help us with the fight to get this cancer more widely recognised.

  26. howard bairstow says:

    All cancers can be treated if diagnosis is made. With the poor life expectancy now it is time this form of cancer was highlighted and doctors were able to spot the problem and treatment can be administered.

  27. Lisa Janes says:

    I lost my dad three weeks ago to Pancreatic Cancer aged 55 years.
    He was a beloved husband, the best dad and his grandsons best friend.
    He was diagnosed in August 2011 and put off going to the doctors with stomach pains (he was a proud man who didnt like to bother anyone). After a couple of trips to various GPs who first thought gallstones he then saw his own GP who referred him for blood tests and scans, this is when we discovered the horrible diagnosis and that it was inoperable because it had spread to his liver. He was admitted to hospital and under went bypass surgery of the bile ducts (i think) and then came home to recover before starting chemotherapy. He had about three months of chemo but faced lots of hurdles along the way. We were told in January that chemotherapy was no longer an option.
    My dad fought hard and never complained once. Macmillian nurses said ‘he was a gentle and throughly decent man’. He fell asleep at home where he wanted to be on the 14th February 2012.
    I would like to say what your doing is absolutely amazing and my family and i are behind you all the way! I have signed the petition and will be emailing and texting as many people as possible to spread the word.
    People have got to start taking Pancreatic Cancer more seriously and the funding that is put into training and research has to be increased.
    Wish you every success! xx

    • Admin says:

      Lisa,
      Many thanks for posting on our website and for your support of the e-petition. However I am really sorry you lost your dad to pancreatic cancer only three weeks ago. 55 is such a young age and your loss must be immense. The story of your dad’s route to diagnosis is sadly a familiar one to us and in our public awareness campaigns this year we will be urging people with mild but persistent symptoms to keep bothering their doctor. This along with our GP e-learning and other educational initiatives and our campaigns for increased funding into the disease we hope will help get more people diagnosed sooner and get people treated better.
      We offer our condolences to you and your family.
      Best wishes,

      Ali Stunt
      Founder & Chief Executive

  28. Stephen Fairweather says:

    Lisa who sent previous email is my neice and a very courageous one aswell along with her sister who supported their dad (my brother) and mum so well during his illness. Their fundraising is a credit to them to help Pancreatic Cancer . I agree with Lisa that it must be taken seriously and like everything else until you are involved by knowing a close relation or friend you tend to cast a blind eye to any disease. We as a Family are united in trying to help you with your cause and if we can help one person then it will be worthwhile.

  29. Marcin says:

    I wish You to help.

  30. Mehal says:

    I support this cause with all my heart.

  31. Adele Pickering says:

    On behalf of Ken Crawley ( who started the petition and is one of the driving forces behind it) and myself, I would like to say a big THANK YOU to everyone who has signed it .

    Regards Adele

  32. Gail Lawton says:

    All the best to you in this very worthwhile campaign.

  33. Anne Sutton says:

    My mother suffered with pancreatic cancer and has been lucky enough to survive after surgery (Whipples procedure). She had an early diagnosis and a fantastic surgeon at the liver unit in Birmingham, Prof Buckles.
    Most people don’t survive because their diagnosis is too late although most have non specific symptoms which are not appropriately investigated.
    I support this petition

  34. Sharon Healey says:

    I support this cause with all my heart. I lost my beloved husband to this hideous decease in March of this year only 27 days after being diagnosed. It was devastating to watch him lose his fight so quickly. He had abdominal pains and lower back pain, weight loss and itching of the skin and then jaundice (all symptoms of pancreatic cancer) for a month prior to being diagnosed and seen three different doctors all of which advised it could be gall stones (he had his gall bladder removed 18 months prior to this) they all said that possibly one had gone astray???? it was not until he finally got an ultra sound scan that he was then told he had a shadow on his pancreas and a slight patch on the liver, he then had a CT scan that confirmed he had pancreatic cancer and he was in stage 4 and nothing at all could be done, he passed away 27 days later. I am devastated and miss him so much, I have not got used to the fact that he was diagnosed with this dreadful decease, let alone, losing him to it. SOMETHING MUST BE DONE TO HAVE THIS DIAGNOSED SOONER.

    • Adele Pickering says:

      Sharon I was so moved by reading your comments above,as it mirrored my late husband’s experiences with this dreadful illness.
      My friend Ken Crawley, along with this wonderful website are doing all they can to raise awareness.If you would like to email me personally,please use the address below
      Regards Adele

      contact@pancreaticcancer-thehiddenkiller.co.uk/

  35. jane seaman says:

    I have sent the survey link to everyone I can think of via facebook and work and friends. We lost our Dad to this cancer in Sept 2011. 2 days after his funeral, Mum was admitted to hospital with jaundice and eventually diagnosed with the same. She died in Feb 2012. They were both so brave and suffered so much that I have to try to block it out for now. It is all too raw to go into detail, suffice to say that it took far too long to be diagnosed. I’ve been fundraising for pancreatic cancer research since Mum died, and await an appointment with a Cruse counsellor. My heart goes out to anyone who has been touched by this terrible disease and I hope that 100,000 signatures are reached.

  36. Amanda New says:

    I fullysupport this petition. We lost our wonderful mum to this vile disease in march 2010. After being very sick for 3 weeks, which she put down to “swine flu”, she went to the GP (after virtually having to carry her there) and was admitted straight away as she had already lost 2 stone and looked a shadow of her former self. Luckily she saw her own GP that day who couldn`t believe how different she looked. (The surgery had only kept in contact by phone as they also appeared to have put it down to flu, and possibly thought it better for her not to go to the surgery, this is only an assumption though, but they didn`t send anyone out to her!!) She was diagnosed soon after this, spent four weeks in hospital until we brought her home. She died 3 weeks later, just 7 weeks after diagnosis. She too had been diagnosed as diabetic, 12 months earlier, so there does appear to be a strong link here. We are just getting ready for our “turn the sky purple with a message to the stars” balloon release on 23rd June at 7pm, an event that is happening all over the uk and many parts of the world,to try and raise awareness, and we will keep on trying for as long as we draw breath!! Good luck with the petition. xx

  37. Adele Pickering says:

    Leaflets and Posters are freely available re symptons of PC and details of the E-Petition,please request these to be sent to you and put through as many doors as possible,
    On behalf of Ken Crawley and myself thank-you, and many thanks to Ali and this wonderful website x

  38. Julie says:

    My beautiful and loving Dad died early this morning of pancreatic cancer, that spread to his liver. He was diagnosed September 10. His 63rd birthday was September 11. He wasn’t an old man — he was full of life. The only blessing was that he didn’t have to suffer the worst of it for very long. He went to the Dr. a number of times over the past 2 years. The Dr. just kept finding things that were merely secondary — or byproducts of the cancer — to explain why he hadn’t been feeling 100%. I can’t believe how fast it happened. He didn’t have a chance. My heart is heavy. It’s unreal.

  39. Elaine Martin says:

    My husband Paul was teated for Pancreatitis in the beginning of May, 2012…..but the specialist never addressed the 2.5cm lesion on the head of his Pancreas with no artery involvement which would have been operable……he continued to feel worse and was loosing weight because of he would get so sick after eating anything……I searched and searched the net and got him an appointment with another specialist. By this time his eyes were jaundiced and he had uncontrollable belching……after they ordered another Cat Scan, the lesion had grown to 4.8cm and was wrapped around the mesenteric artery which made it unoperable. He was only then diagnosed with Pancreatic Cancer on June 21, 2012……..My Paul passed away on August 29, 2012, we would have been married for 45 years on September 23, 2012…….his Birthday is this month, October 25, 2012…….I have joined a Berevement Group from the Hospice that took care of him less than a week before he died………….My heart has been shredded due to the loss of my soul mate…..My life will never be the same. Elaine U.S.A.

  40. james says:

    I had not realised so many people have died in the very same circumstances as my darling wife. In my wifes case it was a ‘virus’ for 5 weeks then PC was diagnosed and she died two weeks later.
    The general Public and MP’s just don’t understand this terrible, killer cancer.
    Have a look at her website and follow her distressing last weeks

  41. Debbie says:

    I lost my dad to this horrible illness on the 4th feb 2012, he to had diabetes, It only took 3 months for pc to take him from us, my dad was my world and I would do anything to see this cancer wiped out, to see him suffer like he did but never once complain miss him every day

  42. claire fitzgerald says:

    I fully support more research into this disease. I have known several people who have had this.

  43. hey it saddens me to read all of this , i havnt lost anyone to PC ,but im in the process of trying to find out if i have it, im only 33 , i have a wife and 2 young children, my story is this, back in June 6th i went to the local ER because i had very bad tightness in my chest & felt like i could only breath if i took a deep breath,was admitted had a stress test, all normal,well after i et home i dont feel any better & i started having loose movements with yellow water everytime i ate, didnt really think much of it,went to Doctor Google & one of the possible problems was PC, well i looked up the symptoms & got alittle afraid,well about a week later i noticed my BM’s were floating and their was a bit of oily residue in the bowl, so i make an appt with a Doc he does a Stone protocal CT scan says everything is normal, that my pancrea’s even looked a bit small on the CT scan,then only thing they saw was that i had a Fatty Liver,well a couple of weeks pass,im still scared its PC,so i go to the ER,they DO a CT scan after i tell them im hurting a bit under my left rib and some in my back & having the oily/floating bm,so i have a Helicat Dual contrast CT scan…Clean said they even looked ot see if their was sign of PC spread…nothing…thats all fine and good(but if nothings wrong why am i in pain & having oily floating BM”S??????) i go to my GI doc, he goes i just think its your IBS acting up ..so i do a 2 month stint with trying to “fix” the problem, during thius time i see another GP & he sends me for a EGD,comes back fine no ulcer,no anything ,yet i get papers on IBs & Gerd .IBS DOES NOT CAUSE U T O LOSE WEIGHT OR HAVE OILY BM”S!!!!!!! WTF…….so as of today its been almost 8 months since i 1st started feling bad, i now have a pretty bloated stomach,constant back pain in the middle or side, my stomach has started hurting 24/7 as well….yet i have no loss of appetite , no jaundice or no vomiting …. i keep reading that people with weight loss but still eat normaly usually have chronic pancreatitis, & i have had pancreatitis before i had my gaul bladder out , im just scared that ive fallen into the trap of mis diagnosis & im going to die weeks after im finally told , so to sum this all up my current symptoms are
    Swollen or bloated stomach – ascites ? possibly ,thought ive had this for a few months ,and i can suck it flat laying down
    oily BM’s – all 8 months
    Weightloss of about 50lbs total so far
    middle back pain about 6 months
    upper left rib pain, off and on, is a bit more constant now
    pain doesn’t go away when bending over , like ive read it can with PC
    constant burping since about august

    but i dont have
    Jaundice ,atleast not yet a\ 8 months in
    loss of appetite , i eat atleast 5 times a day,sometimes more
    weakness , i clean my house almost everyday, i am a bit tired afterwards,but who wouldnt be

    Test ive had
    Ct scan without contrast – normal except fatty liver
    about 2 weeks alter at an ER
    Ct scan with dual Contrast, normal-except fatty liver, no sign of cancer anywhere in my body
    EGD – normal as far as iknow
    Was checked to see if i had hepatitis – all normal
    had a CA 19-9 about 2 months ago & a CBC , all fine

    but still suffer on a daily basis with problems without an answer & im scared to “death” of the response & bitter since my CT scan at about 6 months ago was clear

    any thoughts as to what this could be? could i have Pancreatic cancer

    & God bless u all that have lost a loved one to this monster that doesn’t seem to have answer in making better

  44. Nicola Stephens says:

    After 12 months of constant visits to various GPs, my dad was told that his enlarged prostate and backache was due to his his saddle on his bike being too small, his stomach ache was due to a hernia, he had type 2 diabetes and sent to a gym to lose even more weight than he was losing already, and when he finally couldn’t keep food down and went yellow he was given very strong painkillers and told to return the following week. By this time, confusion had set in and my very fit and very active & healthy dad could barely walk.
    He was admitted to hospital on the Monday, scanned on Tuesday, got a diagnosis on Wednesday and died just 11 days later. His funeral is next week.
    I understand how difficult this is to diagnose early but so many symptoms were missed that I wonder how it is even possible. It seems like not one of the doctors bothered to look at all of his symptoms together, they just treated each individually.

  45. Lesley Staton says:

    We lost our wonderful mum, Alma Surgey, to this vile disease in August 2011 just 9 weeks after diagnosis, and 3 months of treatment for ‘an ulcer’.
    Blessings to all those who have been touched by it, when there are so many affected it shouldn’t be down to luck and patient persistence that it is detected. I would strongly support early screening and will be circulating this to all my contacts so they can add their voices too.

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