Scared

Hello BNJG, 

Welcome to the Online Community. I am sorry to see that you are worried about your health and that you feel you may have pancreatic cancer.

You certainly have symptoms that warrant investigation and it is good that you have had a CT scan and I hope that this will give you some answers. It must be really stressful to have all of these symptoms and to feel as if you are being fobbed off due to your age. It is somewhat reassuring that you have had some normal blood tests, normal lipase and normal ca19. I know that you are concerned that these symptoms are pancreatic cancer but it is possible that there maybe something else going on? 

If it does turn out to be a suspected cancer and you return to the NHS I would hope that they would act quickly within the 2 week system. 

I can understand that being a Mum as well is a worry and that everything feels too much at the moment.

I hope that your scan results come back quickly. 

In the mean time if it would help to talk to someone, please give the support line a call- they are lovely on there.

If there is anything else we can do please do let us know

Jane

Hi no nothing else. I know it’s that because it can’t be anything else’s and I know that a lot of people have normal lipase and not all tumours show the ca19. It’s just very distressing for me waiting right now as I really can’t think anything else can be causing it as I have already have the camera down to check my stomach x 

I understand it must be really distressing waiting. I hope that your scan results come back quickly and that you get some answers. Please let us know how you get on and if there is anything else we can do to support you

Hi BNJG

Very sorry for your distress.

You can also contact Pancreatic Cancer UK and speak to specialist nurses.

XXXX

Hello can anyone help me please? I have had the ct come back clear but my symptoms are so bad. Is there any way the ct will have missed anything and should I get a mri? My acid reflux is 24/7 and it’s been 3 months with ppis not working, my stools have changed, I have lost weight and the pain in my back is relentless. I have nausea and a lack of appetite. I had a camera down my throat and I have had lots of blood tests and so far nothing. I Also get nightsweats. I am terribly depressed as I haven’t ever felt so poorly, I have no energy and now I am wondering if there is the possibility of the Ct being wrong? I do not have anxiety and I’m really suffering and feel like no one is listening. 

Sorry to hear of your situation. Ask for a PET scan. My partners CT came back clear and didn't show spread to bones. The PET did. Different scans look at different things. I don't know why they are not automatically offered.

Best of luck to you

Good Morning BNJG

I am sorry to hear that your symptoms continue to be so bad despite you CT being clear.

Have you got a consultant or are you still with GP?

I am just wondering what to suggest as something is clearly causing symptoms whether it is pancreatic cancer as you fear or something else. We are not medically trained on here so can only speak from our own experiences but I would perhaps consider doing an online consultation with my doctor/or email the consultant. I would do this because face to face sometimes you can not get everything out clearly and things can be missed. I did something similar when I was waiting to hear about my next steps following diagnosis and also when I was waiting for my pathology post op and wanted to know treatment options etc. 

Maybe think about doing something along the lines of this. It's like a summary of everything so far and asking for next steps.

-Date symptoms started

-details of each symptom, pain levels etc

-details of each test, NHS and private

-details of each treatment attempted so far and any side effects

- Repeat that although the tests have not shown anything so far, you still have all these symptoms so they need investigation, different testing maybe, different type of scan etc

- repeat how unwell you are feeling everyday, how it is stopping you doing your normal things

-mention the effect that this may be having on your family life, you have a partner and also a child to care for. 

-suggest what you think your symptoms are caused by (pancreatic cancer) and stress that although you respect the doctors experience/ knowledge etc , that you know your own body, know something is wrong and you really need answers as it has gone on too long. Ask them to explain why they feel it isn't. Ask them if it isn't what could it be. 

-Ask if referral to a different specialist could help

I am not sure what else to suggest but this is how I have handled my own circumstances and it did help. 

You may think of different things to ask but these are similar to what I asked. I found when I did the online system with my GP and then with my consultant- I had a quicker response and was clearer myself in what I was asking.

You could call the support line at the bottom of here if you want to talk things through.

There is also an Ask the Nurse section on here that you could possibly explain your current situation and get a medical point of view from and ask what they would suggest next. 

Ask a Nurse - Macmillan Online Community

I hope this may help a little, I am sorry that you have not yet had the answers you need.

Jane