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New support service launched - Newly Diagnosed Call
By Support Team, in News from Pancreatic Cancer UK
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- New support service launched - Newly Diagnosed Call
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Recent Posts
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By alisonrb · Posted
Hi everyone. I am really struggling to come to terms with what's happened. My husband ( together 28 years and married for 24) has always been very fit being a cycling obsessive, we've always eaten healthily, no family history of pc, he's not a big drinker and never smoked. He's also only 57. He was given a diagnosis of probable pc on October 14th. I say probable because he still hasn't had a biopsy due to him having lost weight and not being well enough ( there is a slight possibility it could be neuroendocrine ). The speed this has happened has been truly shocking. He started feeling a bit 'off' about 6 months ago ( but didn't say anything me at that point). By mid July he was complaining of chest and leg pains and shortness of breath. GP sent him to A&E. Did a few blood tests, and ECG and chest scan which found a small clot. Sent home with a follow up scan booked for September. Had been worried about heart disease ir a DVT but told he was ok. Carried on as normal and went on holiday to Croatia early to mid September, swimming in the sea and walking round the sights. About 2 weeks after getting home things take a dramatic turn for the worse. His legs are swelling and he can do longer ride his bike. GP again sends him to A&E only to be told it's muscular pain and to go home. Still thinking it's something to do with his legs, we pay for him to see a vascular surgeon. This is on October 9th. Ultrasound confirms that his veins are fine but as he is slim from all the cycling, checks hus abdomen which shows enlarged lymph glands. He has also started having bad night sweats. Private dr has contacts at the local hospital and arranges for him to be admitted as he's concerned about possible lymphoma. in hospital finally gets a CT scan of his abdomen and we get the dreaded phone call on the 14th.. It was something we were not prepared for and new little about at that point. It still takes over a week for the specialist to get back to him and a further week for an appointment. By this tine, he has deteriorated rapidly and lost weight and has been readmitted to try and get on top of his pain. He is now back in for a third tine as he is really struggling to eat and put weight on for a biopsy. I am struggling to understand hiw we can go from cycling at least 100 miles a week to this in such a short period of time. I am just not prepared to lose him so young. I've only recently come to terms with losing my mum suddenly too with pneumonia (anniversary is later this month too). Reading other people's stories, I see my story is not unique. I was the one with health problems who was supposed to go first, who was the looked after one. I am beyond heartbroken. Many thanks to Rachel, the specialist nurse here for her support. -
By broju · Posted
Hello France. Don’t despair! It’s not that no one wants to help it’s knowing how best to help. It seems you’re doing all you can by badgering your GP but maybe you should make stronger representations to your surgery than badgering? By posting on this forum you obviously believe your symptoms point to a problem with your pancreas. Have you expressed this concern and pushed for a full exploration of the area? You say you’ve had an ultrasound. Results are usually available within 2 weeks so the readings from that will hopefully guide your GP towards further action. Maybe posting on here again when you get the results will enable other members to help with what to request further from your GP. Your circumstances are incredibly stressful and my heart really goes out to you.X -
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By Support Team · Posted
Afternoon all We have launched a new support service for those who have recently been diagnosed with pancreatic cancer. Our Newly Diagnosed Video call can help you understand what is happening (whether you have pancreatic cancer or you are caring for someone with pancreatic cancer), you can ask any questions you have and nurses can help guide you through the next steps. If you would like, you can invite your loved ones along to the call too. It is your choice what we prioritise in the video call, but here are some suggestions: We can help you understand more about your/your loved one's diagnosis We can answer any questions you have We can help you navigate the healthcare system We can discuss what to expect and plan next steps For more information, and to book your call, click here Nadia x -
By Gemmaanne · Posted
Hi Sanita, I’m sorry to read about your mum, I am currently in a similar situation with my lovely dad and not far from staring his first cycle of chemo, if you don’t mind me asking how has your journey been, I hope everything is as good as it can be. Best wishes Gemma -
By Gemmaanne · Posted
Hi Skippy, thank you for your message and your kind support, I’m truly sorry to hear about your friend Sheila this is such an awful disease with not a fare fight. Following my dad’s appointment his blood results came back ok and he had not lost any weight due to this the oncologist offered palliative chemotherapy of FOLFIRINOX on the 22nd of November, I will update again after his first cycle about this. For now he is eating healthy plenty of everything including added supplements. -
By France · Posted
Hi I have been badgering my GP since January 2024 as I have had pain under my left ribs. I have lost 2 stone since then and become extremely exhausted falling asleep after meals. I am type 2 diabetic and have pain after I have eaten. I managed to get a 2nd opinion in September and they ran some bloods. They discovered I have high amylase levels and low trypsin levels. The low trypsin means I'm not digesting food which is causing the tiredness. I've just had an ultrasound which actually hurt my stomach. What should I expect now? Sorry this is long winded I just needed to get it all out I'm a 43 female no family history and on my own with 3 children so no one to talk to, oh and I'm going through redundancy so having a rubbish time 😢 -
By Skippy · Posted
I'm sorry to hear of your Dad's diagnosis. It's heart breaking and I'm sure your worried. I hope tomorrow gives a better clearer idea on the way foreward. My friend Sheila was 72 when diagnosed and like your Dad had the stent fitted which cleared her jaundice. She too had a good appetite and felt in the main more tired. After the ct scan the consultant was able to give her a clearer overall idea on progress of the PC Be strong and supportive. This site is very good to seek help and advice a bit at a time. It is a lot to take in. Creon was a great help for her indigestion. Her scans suggested 6 months but she was well and her main symptoms was tiredness. She socialised for a good 12 months before she became so tired to go out. She was offered Palliative chemo which is spoken about in length by members, but she chose not to have any. I hope your news on treatment ahead is positive. -
By Gemmaanne · Posted
Hello, I am new to this forum and I am looking for some supportive feedback regarding my dads journey so far, on the 22nd of September 2024 my family fell apart to the devastating news of my dad’s pancreatic cancer diagnosis with liver metastasis at the age of 76, we are just over 5 weeks past diagnosis. On the 27th of September my dad had a stent fitted for a blocked bile duct this went well with no complications or infections, this has managed to treat the jaundice and make life more manageable with less discomfort. On the 2nd of October my dad went back into hospital for a liver biopsy no results as yet, we are currently waiting to see an oncologist on the 31st of October to discuss what they can offer him treatment wise and I’m worrying so much!!! We know it’s inoperable and all we have his hope that we get as much time with him as possible with the best possible quality of life for him, my dad still has a really good appetite at the moment “which we are very thankful for” he is on a nutritional diet with added supplements also taking Creon, he isn’t suffering with sickness and he doesn’t seem to have lost a great deal of weight. Apart from fatigue and feeling more out of breath he is doing quite well so we are worried chemo will upset all this?! I guess I’ve reached out in hope that it will give me some kind of comfort in knowing someone going through something similar may have some useful advice, my dad is my absolute world and he has a big family that love him unconditionally, he is my biggest hero so we want to do absolutely everything we can for him, I am being as strong as I can to keep him going and being positive as we keep saying we are living for today. Thank you Gemma -
By Suzanna · Posted
Rowena , it is great to hear an encouraging post . I am pleased that you updated us all on your progress. As it gives others hope .
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