As a small charity with a team of nurses and information and development managers, Pancreatic Cancer UK offers a great deal of support to those affected by pancreatic cancer, both online and over the phone. And with a passion for seeing the outcomes improve for the disease, Pancreatic Cancer UK’s Jeni Jones and Dianne Dobson were more than happy to address your queries in our expert live chat.
Here’s what they had to say:
Aries032664 asked:Could you please let me know if there is a link between dental hygiene and Pancreatic Cancer??
Jeni Jones(Pancreatic Cancer UK):Hi Aries, There is no link between dental hygiene and pancreatic cancer. However there is some research been done in New York into a link between an enzyme contained in the mouth and a predisposition to pancreatic cancer. This piece of work is ongoing and therefore, it is too early to say whether it is of value or not, but hopefully, it will be a good tool for the future.
Aries032664:I HATE THIS CANCER!!!!!
Jeni Jones(Pancreatic Cancer UK):Hi Aries, I know how you feel. Ditto! as a health professional, this is one of the most awful cancers to be involved in, but this is why we need people to make some noise on behalf of the patients and carers. it is a little known cancer, and most people do not know about the devastation it causes, and how quickly it can take people’s lives.
maria1973 asked:will GPs get better training on how to diagnose PC [Pancreatic Cancer]? If PC diagnosed why are scans not done quickly my mom had to wait 8 weeks?
Jeni Jones(Pancreatic Cancer UK):Hi Maria. Well, we would certainly hope so. We did some work during our early diagnosis summit back in June with GP's from around the UK. we have some actions points from this which are ongoing at the moment. It is a problem obviously, and we know this from the presentation of many pancreatic cancers. Most are diagnosed too late, despite presenting for some months before. At PCUK, we have identified this as a huge challenge and our aim is to campaign to double the survival statistics in this disease. This will involve greater training and collaboration with GP's.
maria1973 asked:Thanks Jeni is there anything we can do?
Jeni Jones(Pancreatic Cancer UK):There is always a wait for such things as Ct scans. Was your mum diagnosed first, and then had to wait for a scan? How was the diagnosis arrived at? If it was a different investigation, it might be that there was something suspicious done, and it all depends on whether the scan was booked as urgent or not. it should have been quicker than that if it was a suspected malignancy.
Amy asked:Hello I am 37yrs old, my granddad and mother have both died of pancreatic cancer. Is there any chance for me to be screened for it?
257288 asked:Can PC be genetic? My dad died of pancreatic cancer 3 years ago, and his mother died with a mass in her pancreas a year after... Also is there anything specific to prevent this type of cancer?
Dianne Dobson (Pancreatic Cancer UK):Hi Amy and 257288, Thank you for your queries, as both of you have similar questions I will answer together - hope you don't mind. There is some evidence that pancreatic cancer can be linked genetically, and for those people with a strong family history there is screening available. There is a service that has been set up in Liverpool and the email address is: Europac@liv.ac.uk, or phone number 01517064168. This service is set up to assist people to obtain the necessary information, so as not to cause anxiety and guide you through the correct testing regime. There are several different types of hereditary pancreatic cancer, too long to mention in this forum. If you wish to visit the pancreatic cancer web site: www.pancreaticcancer.org.uk we do have some information on pancreatic cancer, however our 'Hereditary Pancreatic Cancer fact sheet' is under development so should be on our web site soon. I hope this is helpful. Many thanks.
257288:Thanks, I will definitely look into that, I have an additional question, does it significantly improve the chances of survival if the cancer is caught earlier? ?
Dianne Dobson (Pancreatic Cancer UK):Yes it does help your chances if the diagnosis is made early. Unfortunately with this insidious disease, the symptoms often do not present until such a late stage, that by the time many people present to their doctor and are diagnosed their disease is at a stage where surgery is not an option and maybe so advanced that it has already spread to other areas. Also as the symptoms are often associated with other conditions it is often difficult reach that diagnosis. Hope this is helpful. Thank you.
Mabez asked:Hi Jeni, my mil is at late stages of pancreatic cancer and I would like to know if there is anything more than opioids and analgesia that you can take to help with pain control. Thanks,
Jeni Jones(Pancreatic Cancer UK):There are things called nerve blocks which are useful for patients with pancreatic cancer. A large bunch of nerves, called the coeliac plexus, can be affected by PC, and injecting these with alcohol or other agents can help. You should ask for a referral to an anaesthesist to discuss this.
Mabez asked:Thank you Jeni. Is there anything not involving an injection?
Jeni Jones(Pancreatic Cancer UK):Hi Mabez, have you tried any alternative therapies/ relaxation, massage, aromatherapy, reflexology? Some people find them very helpful and these type of treatments tend to treat the person as a whole being, rather than focusing on the cancer side of things. There may be other painkillers you can have, for example, Gabapentin is very good for nerve type pain, and this is often the reason for the pain. Sometimes, this can be overlooked, so worth mentioning. If the pain is typically back pain, radiating around to the abdomen, then such drugs might help.
Mabez:That's brilliant thanks Jeni, I was wondering about gabapentin so that really helps x
Klo1 asked:What are the differences in symptoms, if any between pancreatic cancer and pancritis? my mom is currently having further tests after the drs found something on the tail of her pancreas during an ultrasound.
Dianne Dobson (Pancreatic Cancer UK): Hi k101 - The symptoms between pancreatic cancer and pancreatitis can be very similar. Often patients will have pancreatitis due to a secondary cause, i.e. gall stones, narrowing (not always caused by tumour) in the bile duct, or it may be caused by an auto-immune factor. The important factor would be for your mother is that she has some tumour markers (blood test) taken and further investigations, this may include a CT or MRI. One of the major symptoms with pancreatic cancer is weight loss and bowel problems (i.e. loose, offensive, pale stools). I hope this is helpful. Many thanks Dianne
Klo1 asked:She has lost a lot of weight and is also diabetic. we are waiting on the CT results along with blood test.
Dianne Dobson (Pancreatic Cancer UK):The symptoms you describe are certainly important. Diabetes can be significant in both pancreatitis and pancreatic cancer. As for the weight loss, that also is important. Has your mother been given any dietary information? We have some great information on our web site if you have the opportunity to read it, www.pancreaticcancer.org.uk/support-and-information/diet-and-pancreaticcancer/
It may be helpful to also read about the Creon which is the pancreatic enzyme supplements.
amanpau asked:Hi. My mum lives in Leicester and was diagnosed with Pancreatic cancer in March this year. She underwent the whipples procedure but they were unable to take out the whole tumour because it interfered with her portal vein. She is stage 4 and started her first cycle of chemotherapy 2 weeks ago. She is on Gemcitabine combined with MK-0752 (a clinical trial) - Do you have any information on this trial and the benefits that have been documented since it started? She also isn't up to much and generally wasn't even before her chemotherapy started - what can be done to boost her energy levels?
This is a question for the experts as well as carers/families of the pancreatic cancer patients? - How are finding coping? Initially, I was knocked for 6 when I found out the prognosis of this type of cancer and have been slowly getting my head around it since March. The phrase 'no-one fights alone' has never rung so true in my life.
Jeni Jones(Pancreatic Cancer UK):Hi amanpau – the trial is looking at combining the drug with Gemcitabine to see if it improves the outcomes as opposed to the standard treatment of gemciatbine alone. it will also help to find out safe levels of the drug to administer. No documented benefits yet as the trial is still open, therefore, these results could take some years, I’m afraid. Energy levels are difficult - making sure she has had her blood tested for anaemia. Of course, chemo will lower the energy levels. plenty of rest, good diet, and gentle exercise will help. Steroids, such as dexamethasone, are very helpful in increasing the energy levels. You can talk to her oncologist.
It is a terrible diagnosis, and not surprising that you were knocked for 6. Have you had a look on our forums on the website? http://forum.pancreaticcancer.org.uk/ Here you can interact with people who are going through a similar journey, and there is a really good, supportive community on here, which I am sure you will find helpful.
amanpau asked:Hi Jeni - Thanks for your reply - We were prescribed dexamethasone by the oncologist on Monday! One of the side effects is indigestion and she suffered that this morning. What can be done to overcome this??
Jeni Jones(Pancreatic Cancer UK):Make sure she is taking something to protect her stomach lining i.e.; omeprazole, or lanzoprazole. this should have been prescribed with the steroids, but it is not always, so you could ask the GP - but as long as you can get a script done pretty soon!
RachelRice asked:Why are there no thorough checks when the diabetes checks are really high as this is a clear signal something more sinister is wrong. After reading the common signs of this type of cancer this was a clear indication, however it seems the pancreas is the last organ checked.
Jeni Jones(Pancreatic Cancer UK):Rachel - do you mean the blood sugars? If you mean why people are not checked for pancreatic cancer when they are diagnosed with diabetes, then this is a good question! however, the proportion of people who are diagnosed with diabetes in the UK will be huge, and most of this is diet or obesity related. it is only when there is a combination of symptoms that there should be an alert for this diagnosis i.e.: weight loss (also common with diabetes), alteration in bowel habit, pain etc...There have been some papers written about the likelihood of PC in patients with diabetes, and also, the likelihood of diabetes being a pre-cursor to PC. it would be good if this was raised in the "newly diagnosed diabetic" clinics - and one which PCUK will be looking into at a future date, I am sure.
RachelRice asked:Jeni- thank you for your response. It should as you suggested be alerted when a few common denominators are reached. As you said the high blood sugars, weight loss, pain these should ring some alarm bells. It shouldn't take so long to diagnose, it’s extremely frustrating these symptoms are taken so lightly.
Jeni Jones(Pancreatic Cancer UK):Rachel - yes, I agree. During Pancreatic cancer awareness Month, we will be doing a Raise for Research campaign, which will help raising money for research into this disease. At present, there is only 1% of cancer research funding being given to PC. You are right - it should not take so long to diagnose. At PCUK, we are really passionate about this and will keep raising the issues. The stats for this disease have to change - really.
RachelRice:Jeni- I will be behind this campaign I agree these issues should be at the forefront of beating PC
Jeni Jones(Pancreatic Cancer UK):Rachel - thanks Rachel. We need everyone affected by this to play a part, believe me! You can find out a bit more here http://www.pancreaticcancer.org.uk/campaign-for-hope/pcam-day-of-action
Christina asked:I would like to know – what is happening to make sure the doctors in the UK do not keep mis-diagnosing patients? As my father and aunt were for many months. Also are patients checked that they have diabetes when they are diagnosed – as there is proven link between this? I know – researching on the internet that the metformin diabetic drug has shown positive effects against cancer. Also – Creon capsules – my father was told by his oncologist consultant he didn’t need to take them – but other people are saying he does. Surely with the number of people being diagnosed with this horrendous disease every day – there should almost be a checklist – so that it doesn’t matter where you are in the UK – you should be provided with the same level of care/medication and info.
Dianne Dobson (Pancreatic Cancer UK):Thanks Christina for your questions. Yes we would agree with you that it is very frustrating and soul-destroying to hear some stories from people who had months of poor health and symptoms that equate to potential pancreatic cancer before a diagnosis is reached. You are also correct about the diagnosis of diabetes and there is much evidence to say that a diagnosis of diabetes is one of the early signs (this is not to scare people who are also diabetic from other causes). Numerous medical research articles have shown that retrospective data of people diagnosed with pancreatic cancer had diagnosis of diabetes some years earlier. The issues about the use of Creon is one of the major support line queries we have, unfortunately, and there does not seem to be any consistency throughout the UK. This is something we have identified as a huge issue and a piece of work we are considering on a larger scale within the new year. You also mention the use of a 'checklist' that would be consistent throughout the UK.
One of our initiatives this year was the 'Early Diagnosis Summit' which you can access on our web pages: pancreaticcancer.org.uk/campaign-for-hope/what-were-doing and then view all our current projects. Your idea of the checklist is a great idea, and something that should be considered, thanks for your inspiration.
susikus asked:I was very interested to see the reference to nanoknife on the forum this morning. Would I be correct in thinking that this cannot be done with metal stents in place?
Jeni Jones(Pancreatic Cancer UK):Susikis - we have the nanoknife rep coming in to talk to us in December, as it goes. But, I can email him and find out for you. I can email you?
susikus asked:I did quite a lot of reading on the nanoknife this morning and it does seem an exciting prospect. Yes please do email me. I think it is all too late for us but if you can find out I'd be grateful
SETHDIXON asked:My mother was diagnosed with pancreatic cancer back in march of this year, since then she has had a stent fitted which wasn't successful so bypass surgery was the next procedure. Her tumour is around 3cm at the head of the pancreas but on blood vessels / supply ? So no surgery can be performed to remove it, my question is how long do people realistically survive from this point ? I have researched a fair amount and watched Patrick Swayze's journey through this awful illness. I'm not sure what stage she is at as the doctors haven't said but she is on her 2nd lot of chemo drip only, the first treatment of chemo nearly killed her drip plus tablets. The doctor did say if you can operate the statistics are people live up to 24 months but without operating 12months and if it has spread 6 months. She stopped the chemo for a while and seems very well.
Dianne Dobson (Pancreatic Cancer UK):Thanks SETHDIXON, I am sorry to hear of your mother's diagnosis and we appreciate how difficult this must be for you all. Unfortunately this is often the case for many patients that the tumour has already progressed to involve the major blood vessels around the pancreas. It is very difficult to give a definite survival prognosis, as no two patients are the same. Surgery does give you realistically the best option, and with new and more modern chemotherapy regimes some patients are having chemotherapy/radiotherapy and then 're-visiting' the potential of surgery. I would imagine as your mother is having chemotherapy that she would be booked for a scan (CT) at some point soon in her chemotherapy regime to ascertain the effect of the chemotherapy. This is certainly a question that you could be asking your Oncologist, and ask when the next scan would be. There are some centres that will do surgery on some of the blood vessels involved, however it depends on which blood vessel is involved and the extent of the tumour, also, the state of the patient, i.e. if they have any other co-morbidities. Thank you, I hope this is helpful.
Hayley27 asked:My mum died last Nov of pancreatic cancer she was 51. I have large lump in my abdomen in the centre and to the right. It causes me pain and discomfort. When I eat I feel bloated and can’t eat very much this morning I have been sick. I’m 27. So scared that I too might have cancer.
susikus asked:Hugs Hayley, have you been to the dr?
Hayley27:Yes they just keep fobbing me off and I’m getting nowhere.
susikus asked:Have you had any investigations Hayley?
Hayley27:Blood tests a few months ago which they said were fine. I had ultrasound 8 months ago and then said they thought it was a fatty lump
Jeni Jones(Pancreatic Cancer UK):Hayley - Sorry to hear about the loss of your mum, and that you are so frightened. I think you would benefit from seeing the GP. It is hopefully unlikely that you have cancer, but it is always good to get these things checked. It could be something entirely different, and this is why you need to check in with the GP. These symptoms are vague and therefore, you would need a physical examination from the doctor to see if they are concerned in any way. Don't be frightened to go.
susikus asked:Hayley, is seeing another GP an option?
Hayley27:Not really. I just feel like they don’t listen. I am overweight but I can tell that my stomach is distended and is very hard but they don’t seem to see it. One doc said because I’m overweight I should just get used to aches and pains!!
Jeni Jones(Pancreatic Cancer UK):Hayley - if you have persistent symptoms, then go back to the GP and ask them to investigate again why you have the pain.
Hayley27:Thanks. My husband is saying he wants to talk to the practice manager on my behalf because he is upset about seeing me in pain and nobody doing anything. But I don’t know if this would achieve anything.
susikus asked:Hayley, I work for a GP. They see all sorts of people all of the time, and most things are simple and sort themselves out. Pancreatic cancer is very rare so many GPs just don't think about it. Do please, choose your favourite one, go and see them and ask for their help
Lynn asked:I am waiting for eus had loads of test what next
Jeni Jones(Pancreatic Cancer UK):Lynn - they will probably take some tissue samples when they do the EUS (Endoscopic Ultrasound). Once they have the results of this, and the extent of what they are dealing with, they will make a plan for the next steps
Christina asked:knowing how the medical/GP's work in the UK - how is information communicated? My father saw 3 different doctors with his pain and his morphine dosage was increased and he had lost 2 stone - but this did not ring any alarm bells. I have read an article of a Dr in the US "who has started to selectively place some of my pancreatic cancer patients on metformin, in addition to their other standard pancreatic cancer therapies" Although I agree that all patients are different in how they respond to chemo/drugs - I also feel human beings are the same - so certain medication should be given.
I also have a question regarding nanoknife - my father has been told if he goes down this route - he will need to stop the gemcap for a few weeks so his body is less sensitised to this. But we have been told he would only need to only stop the gemcap a day
Dianne Dobson (Pancreatic Cancer UK):Christina, thanks again for your input. You have a very valid point, and unfortunately until we can provide a risk assessment tool that is uniform across the board, and perhaps a basic treatment plan it is difficult to have uniformity. The Department of Health plan to run an awareness campaign in 2013 to raise awareness of generic symptoms, so hopefully we will see more awareness come from this.
Jeni Jones(Pancreatic Cancer UK):Christina - can I clarify? You said you were told he would need to stop a few weeks before and then, the day before? Did the same person give you the different pieces of information?
Christina asked:He was told by the ocologist he would need to stop the gemcap a few weeks before. On the internet it states and the professor - has confirmed - that it would be one day before. I do appreciate this is a new treatment to the UK - but just wondered what your view on this is or if you could find out from the rep in December?
susikus asked:I must admit from my reading just this morning the waiting a few weeks Christina seems excessively cautious - time is of the essence! I am no expert though.
Jeni Jones(Pancreatic Cancer UK):Christina - I can certainly email the rep with these questions, but given the specificity of the treatment, I would go with what the professor says. there are often times, especially with the newer treatments, when one plan is thought adequate, and then this can alter slightly. Sometimes, it takes a phone call to the person carrying out the treatment to get the exact instructions. This often happens in oncology, when there are newer treatments being used for the first time.
susikus asked:And another question I'd like to ask is how much is known about the increased risks of pancreatic cancer if a close family member has had it. I am thinking of my daughters here
Jeni Jones(Pancreatic Cancer UK):Susikis - Familial Pancreatic Cancer is uncommon. Usually those with 2 or more blood relatives who have the disease (should be in the same family blood line i.e.: mother and maternal uncle). Even if both parents have had PC, there is no increased risk, amazingly, for the children. Screening would only be done if there were 2 or more as above. That said, maybe it is a case that you don't know exactly all the medical history which might affect your daughter (going back into the generations). Any signs at all in later years should prompt attention, or you can speak with your GP about Genetic Counselling.
susikus asked:Dianne, are you able to tell us any more about the DoH awareness campaign?
Dianne Dobson (Pancreatic Cancer UK):Thanks Susikus, The Dept of Health campaign will hopefully be released next year, it is to raise awareness for generic cancer symptoms, not just pancreatic cancer, due to the common symptoms shared by many of the different cancer groups i.e. unexplained weight loss. I believe that prior to the release of this campaign that all clinicians will be provided with information and education about pancreatic cancer.
susikus:Thanks Dianne. There seems to be a fair amount of symptom awareness raising ads now. Pancreatic cancer is special though because of its nature. It needs some sort of special awareness raising, I am sure we would all agree.
Christina:Thank you for your responses today. pancreaticcancer.org.uk is a great website -which has a very helpful and supportive forum. It does sadly have many people going through the same thing. I only wish the government bodies who decide the grants/research money could read these to see how it is affecting people.
Susikus asked:That's a good idea Christina - when we lobby MPs next month we could ask them to read the forum - that would really hit home if only they would! And are there any actual groups around the country? Like branches of pcuk?
Jeni Jones(Pancreatic Cancer UK):Christina and Susikis - Please do go with this! I think it is a great idea. Any human being who reads some of these forums would be heartbroken at the stories on there. Please do get involved in writing to your local MP. Thanks so much - all the support is needed and appreciated. No, no other groups or branches around the UK - Yet!! (just joking!)
We are inviting MP's to the APPG on 19th November!! We value help and support from people out there. We can't do this without you. Let's make a change for this cruel disease!
Susikus:Will definitely write to/lobby my MP. Already involved with another APPG (Maternity) so have some understanding of how it works. Go for it everyone! And Jeni - why joking? I think branches would be a great idea
Jeni Jones(Pancreatic Cancer UK):subsidies - busy and amazing lady! I like your idea! We are a small charity at the moment. Maybe one day?
Dianne Dobson (Pancreatic Cancer UK):Thanks Susikus, I agree whole heartedly. Maybe we need to resort to a massive 'door knock' campaign of all GP surgeries/and pharmacies - that would be a huge project, and require a lot of manpower, but a great achievement. Pancreatic Cancer UK have some projects in early stages and plans for more 'awareness/education' strategies for the new year. As you know November is Pancreatic Cancer Awareness Month and we will be 'OUT & ABOUT' trying to raise awareness and meeting people face to face.
Christina:I have sent a message to the MP - who covers the Devon area where my father and two other people were diagnosed with this same disease in one town in 12 months - awaiting a response.
Jeni Jones(Pancreatic Cancer UK):Fantastic Christina, thank you! We're having a National Day of Action on 1st November, where we're encouraging people to ring their MPs and invite them to the APPG, so if you haven't heard anything from the MP by then, please do ring back! http://www.pancreaticcancer.org.uk/campaign-for-hope/pcam-day-of-action
Susikus asked:How about an article in the magazines that all GPs like to read?
Christina:susikus - that is a good idea!
Susikus asked:And articles in the popular practice nurse magazines?
Christina asked:Do GP's have time to read magazines though? Do they have an intranet - online system?
Susikus:Christina, I have limited experience (i.e. I only work in one surgery - I am a practice nurse) but all my GPs read and discuss magazines
Christina:susikus - magazines are a good idea then!
Susikus:And practice nurses read too - and we have to record how many hours professional development we are doing and reading can count towards that
For more information or support on pancreatic please visit the new Pancreatic Cancer UK website (www.pancreaticcancer.org.uk) or the confidential support line service ( 020 3535 7099) Monday to Friday 10.00 - 16.00hrs, or you may choose to email on: email@example.com.