Pancreatic symptoms

• I can only speak from second hand experience but if your bloods were OK, that is hopefully reassuring as my family member's CA19-9 test was very clearly high. If you're worried though, you know your body better than anyone and there's nothing stopping you asking to see the doctor again or see another doctor for a second opinion. In our case,  ultrasound didn't show it but CT scan showed it up clearly. If the doctor isn't asking for CT scan yet, perhaps they think it is caused by something else which may show up on that. Fingers crossed for you that all will be OK

Thanks very much for taking the time to reply.  It's very much appreciated

It's OK. If there's one thing I'm learning since diagnosis is that it really helps to talk and people are always happy to be there. Hope it goes well and you find out that you didn't need to worry :-) Take care

One indicator for pancreatic cancer is if your breath has got bad or there's been a rapid rotting of the teeth, as that was what happened to me. I had a pain below my shoulder blade's too before the diagnosis but it could literally be 100 things. A CT scans the only way to be 100% sure but the tests you've had are a good sign that you're OK. The worst thing to do is to trust "DR Google "as if I had listened to him I would've been dead quite a while ago! But I really understand the worry,  it's something that can keep you awake at nights. You've come to the right place though, everyone will give you any help they can. 

Thanks a lot for taking the time to reply.

I've got ultrasound next tuesday so this will hopefully give me an idea of what's happening 

Good Morning, Not too much to add here but I was diagnosed with PC in Dec2022 and my first indication was oesophageal issues, largely around swallowing. CT is generally regarded as the "gold standard" and my experiences with biopsies and endoscopy has been largely negative and inconclusive.

On back pains, I do recall some left side pain early on which has been absent until now. Back pain is now a daily issue for me. I am off chemo since March but I have had a course of immunotherapy (palliative) in Europe and effective treatment for anaemia (after 15 months of low RBC while at the Marsden.

I agree with the Google search comments but don't fully exclude s treatment regimes (and outcomes) vary widely around the world. Stay focused on trials and any scholarly papers. There are a few treatment plans within the EU and elsewhere that are established which are unavailable here that are interesting. In recent weeks, new (potentially curative trials) emerging in recent months. There are mRNA trials in USA but the entry criteria are very limited.

My symptoms throughout have not been focused on gastric issues with side effects from chemo dominating. After ending chemo in March, this is changing. The change is not too dramatic but is growing. A return to weight loss is happening now with low appetite. I have not had this since the first quarter of 2023. I have joined a couple of Pancreatic  Cancer  UK discussion fora but these are seemingly coming to a stop. My partner joined the support group discussions and found them helpful.

Reaching an end to treatment plan(s) is rather scary, made more so by the general state of GP surgeries (it turns out my one is pretty good) but they lack the focus and knowledge that dedicated oncology units have. I will meet palliative care team this coming week.

Please continue posting and I am sure myself and others will try to contribute from our experiences. In the meantime, keep as well as you can and make sure you gather friends and family as close to you as is possible.

Very best wishes

Thanks very much for the response

I was actually at my gp yesterday and my weight has dropped another 3kg in 18 days.   He said it's unlikely to be pc as the pain would be constant!!

Also on my 2 visits to a&e I was told that my pancreas area would be sore and that my pains are muscular.   

On last visit they checked bloods again and said that something would have shown if it is anything sinister.

All of the above responses I know not to be correct from peoples experiences so I agree the depth of knowledge with regards to pc appears to be very limited.  

Regards