Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
649 topics in this forum
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pnet husband having surgery soon
by Tessa48- 6 replies
- 13.8k views
Hi All, never thought I would find myself on this forum. My husband who is 48 was found to have a Neuroendocrine Tumor as an incidental finding on a ct scan for something else. It was all a bit of a shock, I am a trained nurse now working with kids not adults but before seeing the consultant my mind was in over drive. Upshot is it’s a small 2.3cm tumor which the consultant is fairly confident isn’t nasty but obviously can’t be 100 percent sure until it’s out. My husband is to have a laprascopic spleen preserving distal pamcrearectomy at the end of the month. I am just looking for some advice from the wonderful and knowledgable people on this forum. Thank you in advance. …
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My Mum's PC Diagnosis
by HT959- 9 replies
- 14.8k views
On April 21 this year my mum was diagnosed with stage IV PC with mets to the liver and possibly her lungs. She originally went into the hospital for keyhole surgery for gallstones - to say her diagnosis was a shock is a complete understatement. My world came crashing down that day, as it did also for my mum, dad and my brother. My mum is only 50, I (her daughter) am only 24. I switch between being utterly distraught and furiously angry at how unfair this all is. My life since that day has been more difficult and painful than I could imagine. My mum started chemo a few weeks after diagnosis. It hit her hard, and she suffered hugely with sickness even though we were tol…
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Mum Diagnosis
by Margie- 13 replies
- 18.8k views
My mum who has been an active 78 year old, has recently been diagnosed with Pancreatic Cancer, which they say has spread to the peritoneum. She had a CT scan last week with a guide biopsy, and we went to see the oncology consultant today, and he has told us that they can not give a full diagnosis at this time, because of several reasons. 1. Blood mark for Cancer is very low 2. The biopsy from the peritoneum did not give results of cancer 3. The biopsy from the precancerous didn't give results of cancer. My mum however has all the symptoms, being sick, bloating, tireness, they are now scheduling another Endoscopy to see if they can get conclusive results that wa…
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- 1 reply
- 8.4k views
Hello all, I've posted on here once before but not for the past few weeks. Our journey over the last 3 months has been relatively up and down. Dad is about to have his 4th round of folfirinox tomorrow, but we are so concerned about his weight. He's always been an athletic and extremely healthy person, up until this diagnosis in March. He's 67 years old. He's coping with the folfirinox relatively well, managing to keep sickness at bay and eating. He by no means feels good though. This is mainly attributed to the weightloss he has experienced and the sheer exhaustion he has every day. He's gone from being over 11 stone down to 9 which is very upsetting to see. I h…
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Accelerate Trial
by Kerry- 4 replies
- 10.2k views
My dad was diagnosed with PC stage 4 cancer about 5 weeks ago. It has spread to his liver, perinium and lining of his stomach. He’s had a liver biopsy and been waiting to see the oncologist. He had an appointment last week with an oncologist and has been told he may be accepted into the Accelerate trial. Has anyone any knowledge or experience of this? He’s desperate for treatment and is not ready to give up yet although he is losing lots of weight, barely eating and has very little energy. The chemo will be in a 3 week cycle and have one week off in four. I’m really hoping it will improve and prolong his quality of life but at the same time very worried he’s goin…
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Today was a hard day
by FionaJ- 4 replies
- 10.7k views
We got the formal diagnosis of pancreatic cancer for my 83 year old Mum (after hearing something from an A&E doctor after she fell a couple of days ago). But her kidneys are not working well and her INR levels are too high to do the procedure to put in a stent to open her bile duct (she is yellow). A waiting game whilst they treat her over the weekend and review Monday. But the cancer is not operable as it’s round her blood vessels and reading between the lines she is not strong enough for chemo. How do I tell my boys (14 and 17)? What do I need to do to get the best care for her? Advice and support gratefully welcomed
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Dad diagnosed with PC Cancer
by jenjen80- 4 replies
- 8.9k views
Hello all, I am new to this thread. My dad has recently been diagnosed with Pancreatic cancer with mets to his liver. He had his first round of Folfirinox last week. He otherwise is an extremely fit and healthy 67 year old so this diagnosis has come as a complete shock, as I'm sure it has to anyone faced with this. Apart from that, We are an extremely positive family and determined to fight this with everything we have and look at all options available. I wondered if any of you could share your advice with regards to eating to try and gain weight again. My dad is athletic so has always been slim, but our concern right now is the added weightloss he has suffered due …
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Attendance allowance
by sadiepup- 2 replies
- 7.5k views
I recently applied for attendance allowance following 6 months chemotherapy and then a Whipple operation but it has been turned down .Should I ask for a mandatory consideration
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Family PC
by elgirl- 5 replies
- 11.8k views
Dear all, I have been a silent reader of this website for more than 6 months. I don't know why I have decided to write now my experience although my loved ones with this disease have already left us. Yes, I say loved oneS because three members of my immediate family passed away from PC. First my grandfather which I have never met, he died before I was even borne. This did not particularly affect me as I have never met him. However my life turned upside down in june 2016 when my uncle was diagnosed with stage 4 PC. My mothen insisted that my dad got checked himself "just in case". Although he had no apparent symptom, he reluctantly went to his doctor. In july 2016, my …
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Diet help and advice
by Elle- 16 replies
- 18.5k views
Hi all I was tempted to write chapter and verse about my awful month long roller coaster journey supporting my dad through his journey to diagnosis, however, I would appreciate some pointers about diet. My dad is expected to be ‘sent home to die’ as he put it, on Friday. The hospital food has been awful and I’m hoping some proper nutritious food will help him feel a bit better. I think fatty/fried foods as well as red meat are not the best things, and I understand that chicken/fish/veg and some fruit would be better. Is there anything I should be aware of to avoid or include? I don’t want to give him anything that will make life more difficult for him. He has spoken to…
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This seems to be all happening too fast
by Dereks Daughter- 7 replies
- 11.3k views
Hi, My father was diagnosed with PC three weeks ago and in that time I’ve found this forum extremely helpful. As is possibly the way, as a worried daughter I have spent a lot of time researching possible treatments and finding hope in some of the stories I’ve read online. However, following a biopsy last week, we’ve today had a meeting with the oncologist who has said the cancer is aggressive and she could see the deterioration in dad within two weeks. Despite anti sickness tablets, dad is still being sick frequently and has now been put on an IV drip for his medication (including anti-sickness and a steroid for inflammation). The oncologist thought the sickness…
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Help please - what to ask the doctors
by Mrshappy- 4 replies
- 8.8k views
Hi all - it's my first post on here. My dad was diagnosed with PC 2 weeks ago aged 68. We have not had a huge amount of information so far other than they don't think it's spread beyond the pancreas and is still small but surgery doesn't look like an option right now due to the proximity to a blood vessel. We are meeting properly with his team for the first time tomorrow so I want to know what should I ask please - the last 2 weeks have just been horrendous and we are all getting our heads around the news 😣 thanks all.
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Don’t know where to start 1 2 3
by Christine49- 62 replies
- 67.4k views
Hello everyone, I am glad to have found this forum. My mum was officially diagnosed with PC on Boxing Day after a few months of upper abdominal problems and pain at the side of her ribs for about 6 months. We’d been drip fed a little information following an ultrasound and CT scan by her GP and following one trip to A&E so we already knew what was coming but after some severe vomiting and not eating for about 3 days she was rushed into hospital and they finally told us. We know there’s some lymph node involvement and a spot in her liver. Unfortunately we’re already familiar with the condition as my mother-in-law passed away from PC only 4 years ago. I …
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Question re time in end stage
by Staystrong- 19 replies
- 23.6k views
Hi. This is my first post on this forum. As I type I know I should be asking this question to my mums team. My mum was diagnosed with pancreatic cancer almost 5 years ago, since then she had surgery, chemo, recurrence and numerous chemo interventions until autumn 2017 when chemo was no longer an option. She is at home, pain is significant but mostly well managed and meds are reviewed often. She is able to do very little due to sob / fluid on her lungs. Something we've never asked team specifically is regarding predicted time as from time of diagnosis that is not something she wanted to 'have hanging over her'. At this stage I feel I need to know an estimate, I want to s…
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I am Struggling with Information
by Jools- 3 replies
- 7k views
Hi. This is my first post. Last October my Mum was diagnosed with a growth/tumor on her pancreas. She had lots of tests and scans but, whilst awaiting results etc. caught Sepsis and all treatment was obviously directed at that. After getting "better and stronger" she had a biopsy. I could not get her to say if the results showed cancer of the pancreas or not. She is now having yet more tests and now she tells me that the Whipple Procedure has been mentioned. Well, since pancreatic cancer was suspected back in October, I am struggling to understand why is is not receiving any treatment. My Mum will never give me a straight answer i.e. whether or not she has actual…
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Biopsy results
by janmac- 4 replies
- 8.6k views
Hi this is my first and I'm sure not last post. My mum has been diagnosed inoperable PC today we went for biopsy to get more information re size etc . Can anyone give me advice how I can sit with her and hear the results and time scale ? I'm trying to be strong but I'm dreading this part x
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Hello
by Jfenney- 1 reply
- 6k views
I have just joined having recently been diagnosed with Pancreatic cancer , at the spritly age of 55 I like many thought wow that’s a shock as it came from a blood clot on my leg. I was in the army for 23 years, never smoked or drink to excess and fairly fit playing sport on the weekends. My wife was shocked but i still had a very pragmatic view whatever the case we will deal with it and having our first consultation the consultant did not mince his words and gave it to us warts and all , I still remember that figure 30% chance of making 5 years. However I said it will best 5 years I will tell you, this being said the mass in the pancreas was 7cm in diameter and a Ra…
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New Diagnosis Limbo 1 2
by LanasMum- 35 replies
- 50.6k views
Hi all. Have been reading posts and learning a lot on behalf of my Dad who is newly diagnosed - have now come up with some questions, and I guess just a need to write it all down, so I thought I'd introduce myself and Dad's situation to this lovely supportive group. On holiday in October (long haul), he developed what we now know is a DVT - was uncomfortable for the 6 weeks he was away. GP did a test for DVT early Nov - negative and treated him for a chest infection. Dad went back in December as still breathless, calf hot and swollen - ultrasound confirmed DVT in groin and small ones in lungs and something was seen in the lymph nodes so we were told he would get anothe…
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Help over Christmas
by 9ham- 4 replies
- 8.1k views
I feel like I shouldn't be posting here as I have not been of great support to my Step-Mum. She was diagnosed in June this year, whilst I was receiving psychiatric care for an unrelated illness. My Step-Mum was of great support when I needed to live with her and my Dad two years ago, because of my illness. Now, I am returning to spend Christmas with them, but have only had phone and face-time contact since her diagnosis (I live 200 miles away and have to work here). She had a stent fitted in her bile duct a few weeks ago and will be restarting palliative chemo between Christmas and New Year. She does not know her prognosis (although my Dad and I know that her life is now …
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Firstly I want to thank every one on the forum for all the help and advice I have gained reading all your posts, I have cried and smiled along with you all unfortunately there have been more tears than smiles. So if we too can help anyone else here is our story. It started in December 2012 with Trevor being diagnosed with type 2 diabetes, feeling very tired and having pains in his abdomen, which we thought originally were from the Metformin, he had suffered from diverticulitis on and off for the previous 18 months, but this was different. After visiting the GP some 5 or 6 times he was sent for an ultrasound on his gall bladder at our local health centre, on the 2nd May …
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I feel like a fraud posting
by Vikingv- 4 replies
- 8.2k views
I suppose I’m suffering from survivors guilt......and that’s before we’ve lost hin. You see my Dad was diagnosed with this vicious disease two weeks ago and it’s terminal. I’m heartbroken. He’s survived two other types of cancer and it’s this one that will get him. The one that has virtually no symptoms, the one who’s survival rates haven’t changed in decades. I’m angry, I’m lost but most of all I feel a fraud for feeling like this because it’s not happening to me it’s happening to him I can’t even cry into the cat as another lady has done, as mine is at that unsociable teenage stage.....clearly I need a dog.
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My Lovely mum
by Honey759- 2 replies
- 6.6k views
My mum who is 82 next week has just been diagnosed with pancreatic cancer. She has severe arthritis and Parkinson’s disease but at the moment remains independent in her own home The oncologist offered chemotherapy but she has turned this down, which I do agree with as she wants to carry on going out and about with her friends and not held back by the main side effect of tiredness The plan is to rescan the first week in January then see the oncologist again mid January I know everyone is different but I’m so anxious about what the future holds for my mum and wondered if anyone has any thoughts to share with me Thanks for reading
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I have been on this journey for 15 months. My beloved hubby was diagnosed in May 2015 with a non-metastatic mass on the head of the pancreas. He was 59 and we were, naturally, devastated. As the tumour appeared to be contained within the pancreas, a Whipple was attempted but sadly aborted as the tumour involved his portal/SM vein. Before sewing hubby up, the surgeon performed a palliative double gastric bypass, connecting hubby's bile duct and stomach to his jejunum. After the operation the surgeons told us that the next step was to get hubby fit enough for Folfirinox in the hope that it would shrink the tumour away from the veins, and then to have another try at a Whippl…
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New - feeling scared
by suemc- 8 replies
- 9.3k views
Hi, we returned from a lovely holiday in Nov 17, believing yet again my husband had a great colour, after a day or two of being home my children mentioned that the colour was yellow, in the natural daylight yes it was. This started to become more apparent over the next couple of days, that's when my mind went into over drive, actually on holiday my husbands appetite was very minimal, he complained of indigestion and belly ache, he would no admit things were not right in fact, things started to add up. over the last couple of years there had been lots of little things, back ache, tummy upset, indigestion which all had been ignored. now he was very yellow, I booked an emer…
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Mum just been diagnosed with PC
by Devastated- 7 replies
- 9.6k views
Following mum being diagnosed suddenly with type 2 diabetes 2 years ago, and gradual decline in her weight, which we thought was due to her eating more healthily, we now find out, having attended the doctor with the indigestion type pain, and sore back, not to mention the erratic blood sugar levels - that she has pancreatic cancer which may have spread to her liver, but has wrapped itself around a main artery. This was discovered following a ct scan only 10 days ago, and on Friday we spoke to the Consultant who confirmed our worst fears, that mums cancer is beyond operable. She is fit, active, doesn't drink, and was a moderate smoker 40 years ago. She lives the hea…