Patient Experience Forum
A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).
280 topics in this forum
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46 Year old dad with pancreatic cyst
by rharrison1971- 2 replies
- 15.3k views
So today I went to see the consultant with my mri which showed a cyst on my pancreas. He has agreed that it should be evaluated ASAP using EUS and a decision will me made on what to do after that. I have to say I’m not holding out much hope at the moment as I’ve had progressive upper right abdominal pain for the past 5 months and it’s been a battle to get my GP to take me seriously. So anyway in the next few days I’ll find out if I’m in the club or not. I’ve already put myself in but I guess should be careful doing that till the diagnosis is in. I’m hoping there’s no mestastacies and with a bit of luck a chance of some solution. Any how thought I’d chuck that out to you a…
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Recent operation
by sadiepup- 4 replies
- 13.8k views
I am a carer to my husband who has had a Whipple operation on 27th February this followed 6 months of chemotherapy which he tolerated well Since his discharge he has become depressed and does not feel he is progressing He has lost nearly 2 stone in weight and no longer has an appetite and does not feel like eating.He has to take Creon tablets and we haven a dietitian who was very helpful.On discharge he became very sick in the evening after eating and was prescribed anti sickness medication which has helped .I would like advice on what to do to encourage him to eat .After eating he feels bloated and uncomfortable .I have started giving hi small snacks every 2 hours and …
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Help !!!
by rharrison1971- 3 replies
- 13.8k views
Hi I’m Robert aged 46. I’ve been suffering a lot for the past 5 months and finally got a results back from MRCP with 1 cm cystic lesion on the head of my pancreas. Given the constant abdominal pain and back ache I’ve been suffering and terrible wind I’m convinced this is malignant. I’m hoping that it might be operable given the size. If anyone is out there who can spare a few minutes to chat about life that would be really appreciated... I’m feeling lonely and scared atm
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Im told I need a total pancreatectomy aged 70yrs
by Geoff999- 6 replies
- 16.5k views
Dear all I'm asking for information and life experiences from anyone 70yrs or older who have had, or know someone who has had, a total pancreatectomy. I'm told by my Consultant surgeon I should have my complete pancreas removed but I just don't know what to do. I'm 70yrs and already take meds for Lupus, an immune system disorder. I remember 16yrs ago being treated for Non Hodkins Lymphoma - which was successful - but suffered badly from chemo as Lupus completely knocked out my immune system and I remember saying at the time I just wanted to die it was so bad. Now, with all those memories flooding back, I have to make the decision on whether to go through all that aga…
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42 year old Mum that needs help
by joanna1975- 17 replies
- 39.6k views
Hello All, My name is Joanna and although I don't have a final diagnosis yet, I'm awaiting for my MRI scan results and scared to death that a diagnosis will confirm what I'm afraid of most- PC. I have most of the symptoms of tail/body cancer and falling into depression. Unfortunately my GP thinks that I'm neurotic and if ultrasound didn't show anything and I don't fall into criteria ( age, jaundice, history of a pancreatic cancer in the family etc.) it must be IBS, even though my symptoms are typical for PC and very similar to some of you. I decided to do MRI scan ( with contrast) privately and waiting for the results, which I should get this week.I'll be very gratef…
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stage 4 long time survival without operation
by patrigib- 16 replies
- 39.2k views
My husband was diagnosed with pancreatic cancer 3rd Sept 2014. Attemped wipple stopped due to 2 liver mets. Life expectancy was one year. Had folfirinox, stable pancreas tumor and mets. Was on 5 fu maintenance. Mets recurence April 2016, back on folfiri. Last MRI ans scan shows stable disease ( end of June 2016). My husband is doing well, even if he asked to have chemo every 3 weeks now instead of everey 2 weeks to have more time feeling ok. He needs to have a short nap and feels easily tired but leading a normal live. He is 73 years old. Anyone with similar experience? What to expect?
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11 months since my Whipple!
by Jo W- 4 replies
- 14.3k views
Hi there, In September 2016 I was diagnosed with Pancreatic adenocarcinoma TN41MO involving superior mesenteric vein. The aim was to get me on a clinical trial and I was fortunate to get on the SCALOPE2 trial, I commenced this in October 2016 and although it was very tough going for me, all due to adverse reactions etc, it meant I was unable to complete all my chemo. But it did shrink the tumour enough for the team to consider a Whipple and on 23 Feb 2017 they did the procedure, 12 hours in surgery! I was only in hospital for 7 days and thought yeah I will be fine at home! but nothing can prepare you for the after effects! Recovery has been up and down,my husband has bee…
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Possible Pancreatic Cancer
by PCUK Nurse Dianne- 2 replies
- 14k views
Due to a number of posts that are causing angst and upset to other forum users, this post has now been deleted. Thank you to those regular users who have supported users of this forum and PCUK will consider a more appropriate forum space for these concerned patients. Dianne Pancreatic Cancer Specialist Nurse Pancreatic Cancer UK
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Diagnosed in May 2017
by Tina1963- 18 replies
- 29.5k views
I was diagnosed with locally advanced pancreatic cancer in May this year. I had to have a stent fitted in my bile duct as the tumour was causing a blockage. I am 54 years of age. I had 3 months of chemotherapy from June till Aug which I coped really well with as it was only once a fortnight. I just suffered the tiredness more than anything. In Oct I started to feel unwell where a ct scan revealed that my stent had gone missing.? I have not had to be re stented as I have no blockages. Since this episode my appetite is zero. I have tried build up shakes but they go straight through me & tbf taste pretty vile. I have just finished 5 days of radiotherapy purely for pain m…
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Hello everyone, I would like to share my experience of being diagnosed with advanced pancreatic cancer and treated in France. I am a 36 years old mother of two young children. Before being diagnosed I was never really sick with anything serious, so naturally I could not understand how this could be happening to me. I was healthy, exercised regularly, didn't drink or smoke and always paid attention to what my family and I ate. I was diagnosed with advanced pancreatic cancer in October last year, two and a half weeks after the start of my symptoms. I suddenly started having diarrhea. As I am used to gastric infections with the kids, I didn't think much of it at first. A…
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What lies ahead
by Mags- 9 replies
- 23.9k views
Hi everyone Im fairly new here,been looking around for the last few weeks just reading other peoples stories and wondering what lies ahead for me. In April 2014 my Husband has a triple bypass,in the July this failed and he had another heart attack the scan that was done showed a small mass on his Lung which was diagnosed as small cell cancer for which he had 20 sessions of Radiotherapy which reduced the size of the tumour but we were told it was inoperable and it was just a matter of time. He finished his treatment in October 14 and we settled down to wait and see what happened. What happened was that in November 14 he had a Stroke[a large bleed which he wasn't …
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- 1 follower
- 315 replies
- 262.7k views
Hello all This is a forum I never expected or wanted to be posting on as I am sure you will all understand. I have been reading the forum for the past few weeks and have found it very inspirational and supportive whilst feeling isolated and scared. I am a fit and active 42 yr old woman. I am a regular runner and have completed atleast 8 marathons, numerous half marathons and 10K's and a couple of ultra running events. I also enjoy swimming and cycling. I eat a healthy diet and don't smoke or drink. I have two children aged 20 and 18 and a fabulous husband. They are all incredibly supportive and after the initial shock, devastation and fear we are all trying to remai…
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Overwhelmed
by fifi- 6 replies
- 15.9k views
Hi all. I am fairly new to this site. My situation is a little unusual as I have been struggling to get a diagnosis for the last 11 weeks. After experiencing a range of symptoms including a change in bowel habits, epigastric and abdominal pain, nausea, a loss of appetite and a weight loss of a stone I have had a multitude of investigative tests including blood tests, an ultrasound, a gastroscope, a colonoscopy and a CT scan that came back all clear. However, finally a few days ago an MRI revealed a tiny 4mm cyst on the tail of my pancreas near the main duct, possibly an IPMN. The report was not unduly concerned and advised me to have a repeat MRI done in 1 or 2 years time…
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Overwhelmed
by fifi- 0 replies
- 10.5k views
Hi all. I am fairly new to this site. My situation is a little unusual as I have been struggling to get a diagnosis for the last 11 weeks. After experiencing a range of symptoms including a change in bowel habits, epigastric and abdominal pain, nausea, a loss of appetite and a weight loss of a stone I have had a multitude of investigative tests including blood tests, an ultrasound, a gastroscope, a colonoscopy and a CT scan that came back all clear. However, finally a few days ago an MRI revealed a tiny 4mm cyst on the tail of my pancreas near the main duct, possibly an IPMN. The report was not unduly concerned and advised me to have a repeat MRI done in 1 or 2 years time…
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Jane's story 1 2
by JaneTravers- 30 replies
- 57.4k views
Hi All, I have been reading posts on this forum for a couple of weeks, and now feel ready to share my story. I am 63 years old, recently retired, married with 3 grown up children and 3 grandchildren. Up until Christmas, I was fit and healthy, I enjoy running, especially park runs, swimming and spinning. At Christmas I became ill with what I thought was a stomach ulcer, but after a long process of elimination, unfortunately was diagnosed, by CT scan, with pancreatic cancer. After a biopsy, that diagnosis was confirmed as stage 3 locally advanced PC, which is not operable as it is invading my small bowel and blood vessels, although it hasn't spread to other organs. I had…
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My convoluted diagnostic thread 1 2 3
by BlacJAC- 58 replies
- 105.7k views
As things currently stand, I haven't been diagnosed with anything and I'm hoping this doesn't come across as me being a hypochondriac, especially when there are many people on here either battling this dreadful disease or have a family or friend fighting the disease. Ok, where to start... I'm 41 and a smoker. Haven't touched any alcohol for 8 years. For the last two years I have been taking codeine twice a-day (60/500mg)for a disc problem which was diagnosed via an MRI around that same time. That's my outstanding medical history up to this point. For the last year I have suffered from bad constipation, doing little, then suddenly having a complete clear-out fr…
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Hello Everyone I have been reading this forum with much interest and thought I would join in on my husband's behalf. Background: He is 71 years old and never had a day's illness (not even had flu) until we were faced with a possible PC diagnosis when a blood test came back showing jaundice and diabetes. We were totally unaware of the diabetes but, in retrospect, had sort of been aware of him going yellow. Within days of this he was in hospital for 3 weeks, where they put in a stent on the second attempt, stabilised the diabetes and got him on a self-injecting regime. By this time he had lost 2.1/2 stones. He was discharged on the 11th March and we were given an …
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Speed of diagnosis is scary!
by Annf67- 9 replies
- 23.8k views
Hi all Well it isn't the place just 2 short weeks ago I thought I would be. Having gone to the docs with a sore calf, I was sent for blood tests to look at enzyme problem and dvt, when the d dimer came back at over 10000 I had the out of hours doc at my door with some fragmin injections and antibiotics for an infection. This was 2 Mondays ago, went to hospital on the Thursday for an ultrasound and got confirmed as having 2 clots in my left leg. Got warfarin and more injections and just carried on. Tuesday of last week, I got rushed into hospital with a pulmonary embolism in my lung. What I didn't realise at the time but the professionals do is that blood clots…
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I hope it's ok to post in this section, as I'm not the patient but it is all about him. I’ve not been coming on the forums that long, on and off for the last year and a bit, mainly because I found it hard reading everyone’s struggles, but stories need to be told because everyone is different and when I went looking for info I never really found someone in the same situation as us, so if anything hopefully someone else will get some help from reading this either now or in the future. My partner Carl (whose story is on the website here http://www.pancreaticcancer.org.uk/information-and-support/real-life-stories/operable/carl) was diagnosed in September 2012 at the ag…
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Mom's story
by TexasDaughter- 12 replies
- 24.6k views
My 78 year old mom began having abdominal/back pain late last summer. Her PCP ran lots of tests and couldn't determine cause. She was in the hospital for 10 days last fall. She became unable to eat and lost more than 20 pounds...significant since she was already thin. They found out of whack sodium and potassium levels and an impaction. Refused to give her pain meds because they said it would make impaction worse and told us there was no cancer anywhere. More tests, scopes and scans over the next two months but no dx. In December the pain was so bad we took her to a larger hospital emergency room. Within an hour they found the cause of her pain - a golf ball size tumor on…
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- 3 replies
- 16.1k views
Dear all, please help me understand the pet scan of my dad. He had the whipple last june. then he had a second surgery because they suspected metastasis, which turned out to be an ulcer. then he had 6 cycles of chemo. his CA-19 is a little bit elevated 80, but the doctor said it can be anything and they should do the scans before decide what to do. so the normal scan did not show anything. the pet scan showed 1 lesion on the liver 13 mm SUV 4.7. we are waiting for the comission of doctors to nterpret the results, but that will be after next week. On the pet scan it is written that this lesion is assosciated with the main disease. please tell me is this SUV borderline, can…
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Waiting for Wipple surgery
by ChrisP- 3 replies
- 14.5k views
Hello In lots of ways I am probably quite fortunate in that my lesion, which is in the uncinate process of the pancreas, is not yet cancerous but at almost 3cm wipple surgery appears to be the only option as it continues to grow and is extremely likely to become malignant. More than 40 years ago I had a colectomy (removal of the colon) due to inherited polyposis at xx Hospital when it was in xx but is now attached to xx Hospital in xx. I do not have a pouch. Polyps still grow in my rectum and are inspected every 6 months and the larger ones removed but, as time passes, they have spread to my duodenum. Because of this I was referred to UCH London about 5 or 6 years a…
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Whipples stomach pain/discomfort
by RoyBoy- 12 replies
- 29.1k views
I have started to suffer from relatively minor discomfort/pain after eating. I am sure I read on here some advice about buying some herbal mint substance to ease this ? I will get some in reserve. I thought it said available from Holland & Barrett. Does anyone know what this may be ?
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Whippleversary
by RoyBoy- 13 replies
- 26k views
Hi, Today is my 6 month Whippleversary. 6 months since my Whipples operation on 26/04/14. I apologise to everyone for copying the American Whipples Warriors Facebook page where they all seem to do this. In the UK we are more reserved and private ? What the heck.
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IBS?
by HelenC- 11 replies
- 20.3k views
Has anyone else had really grim gastric symptoms with PC? I've had bloating for a while, for the last week it's been joined by diarrhoea and nasty gut spasms, which are quite painful. The bloating has also worsened. There are various over the counter options but I'm on so many drugs I don't know what's safe. I mentioned it to my GP and she's increased my pain meds and given me an anti sickness drug, but these haven't improved the problem. I'm stage 1, I had a failed Whipples 9 weeks ago and am due to start chemo within the month. I was starting to feel better but this is really dragging me down. I'd be grateful for any tips.