Hello Paulch

I'm sorry to hear about your wife's diagnosis. Undoubtedly this will have been very difficult news for you to both hear but it sounds as if you're moving forward today with a positive mindset and I know that many of our members will agree that this will be a big help to you both. 

We do have information on our website about finding a clinical trial that you might want to have a look at but I wondered if you might find it helpful to have a chat with one of our nurses ahead of your oncology appointment. I know they will be happy to listen and offer any advice, information, and support they can as well as help you think about questions that you might both want to ask. If you'd like to talk with them they're available Monday to Friday 9am to 5pm on 0808 800 4040. 

It's easy to feel overwhelmed by information when a cancer diagnosis is first given so if you have any questions please do get in touch and we'll do our best to signpost you to where you can find answers and support. 

Sending you both my very best wishes, 
Jenn
Cancer Chat moderator 

I strongly recommend you take a look over on the official UK pancratic website, so it's legit, not some quack site. They also have pancreatic nurses, that you can call and a forum. There may be options outside of the NHS should you ever wish to look into them. There, you'll see people talking about laser ablation for liver mets (i'm not sure if that is now offered on the NHS. It wasn't when my uncle had PC), and some people send their scans etc over to a treatment centre in Germany that happen to be a centre of excellence when it comes to PC.For example, they have operated on people who are deemed inoperable here in the UK and elsewhere. I'm assuming i can't name names, but it's easy enough to pull up in Google.

Hi Paul,

I'm so sorry to hear of your situation.  As I write this I hope it finds you and your wife well.

My ex husband has a very similar diagnosis.

I would like to chat with you and see if you had researched any clinical trials.

Kind regards 

Grainne

Hi Whitewitch73 I’m sorry to hear about your ex husbands diagnosis. The following is only my experience so far and the one thing I am certain of is everybody’s experience is different and for the person that has this cancer both symptoms and treatments are completely individual. This is important to remember because in our case we’ve not asked for timelines or outcomes and have learnt very quickly to take each day at a time and enjoy every good day. Positivity has helped us and continues to help us as we have had to battle the first round of chemo treatment with each treatment putting my wife back in hospital. However the team have lowered the dosage and finally we have the right medicines to ease my wife’s pains and now she’s eating and has responded to the latest chemo very well. She’s managed to regain her energy and she’s like a breath of fresh air so today we are thankful. 
the other thing we hold on to is the hope that new meds / cures can be found in time and for my wife. It seems like lots are happening behind the scenes in testing and trials but it would seem not so much for the later stages of PC. have asked about clinical trials however we are based in Devon and it seems that there is a massive breakdown in communication between other hospitals we were only told that Plymouth, Exeter and Bristol have nothing at the moment however their system doesn’t look at hospitals anywhere else. We did ask for a second opinion however we never got the results back in time and opted to start chemo in Torbay hospital. we feel we’ve been totally let down from the start of this journey by the doctors who both missed her symptoms for 9 months and told her she had cancer via a txt msg. The one shining light has been the nurses at pancreatic cancer uk who you can chat to on the phone, they have pointed us in ever right direction from advising creon tablets and asking for Pallative care to step in Pallative care are specialists who just don’t deal with end of life but know far more about treatments than the doctors ( in our experience) I hope this answers some questions and as I said we live in hope that a new treatment/ cure comes at the right time to save my wife. If your here if any clinical trials in your area then please let me know and I will do likewise.  

Hello 

I hope your wife is ok and her treatment is going well!!

I am new to this chat but I feel so lost at the moment I too have been having tummy problems for 9 months now and my GP seems to just plod along giving me gaviscon Buscapan and omerprozol and I am still in pain .I had more blood tests and my liver function test went from 10 to 78 he didn’t seem that bothered just said we can do another test in 4/6 weeks  I would like to ask how your wife was finally diagnosed. I did have an ultrasound scan in March that reported pancreas ecogencity high due to normal ageing process. 
camera down throat just a hernia found but my symptoms are changing every day. Any advice what should I push for now. My doctor has now said I am too anxious and need to calm down can you suggest my next step. 
Hope you don’t mind me asking you. 

Hi itsme1234, I’m sorry that you are feeling this way and you seem to be getting very little from your doctor. As you’ve probably read my wife was ill for 8 months on and off with gastro issues, as she was a size 20 ish she started losing weight almost at the same time. She was delighted with this at the time but I was worried that her weight was dropping yet her diet / lifestyle hadn’t changed other than suffering from indigestion / bowl movements / tummy cramps. She had a camera but that failed to pick up the cancer ( we were told after that it’s very hard for it to be picked up in this manner) she also had no liver/ cancer markers present in any blood tests ( this can be normal for the majority of people) even now the markers are not present yet some people will show these marker in their hundreds. Recently she did have an ultrasound and the cancer was spotted but the only clear and certain way to tell is via a CT scan. I’ve been told my wife’s doctors failed at every opportunity to get her to have a  CT scan earlier as she had sufficient warning markers  to get a one but was basically denied it because they assumed she was to young to have pancreatic cancer!! Eventually a nurse at the drs sent us to AE and they thought she may of had gall stones issues and only gave the scan as we asked to be sure. My advice would be if you’ve had weight steady loss in this time  to push for a CT scan. If the drs don’t send you go to AE and try that way. I’d personally go privately to ease any of your fears and u might find it’s not that expensive because it sounds like your anxious and u know something using right and if you catch it earlier u have a much better chance of it being operable. I hope this helps and do not give up on putting pressure on your doctor. 

Hi there

i really thank you for your reply!! I think you would believe that I have been to A&E 5 times going back between Jan/Feb but sent home every time with diagnosis gastritis. I think you are right about private CT scan I am going to look into that now

best wishes 

I initially lost weight but that was back in January I just couldn’t eat at all then !! but my weight is steady at the moment !! Will let you know how I get on booking the CT scan it’s good to have someone that understands thank you for your support 

best wishes