Hello charlotteillustrastor

I'm sorry to hear about the ongoing health concerns that you're dealing with at the moment. It sounds as if the hospital is trying to get to the bottom of things for you but it's understandable that you may be feeling confused and left with lots of questions, particularly as you're being moved from one department to another. 

A CEA test result may be raised in some non-cancerous conditions so try and stay positive until you have any news to the contrary. 

We know that waiting for appointments, tests and results can be difficult. I wonder if you might find it helpful to chat things through with one of our nurses ahead of your next hospital appointment. I'm sure they will be happy to try and offer any advice and information they can along with helping you think about some of the questions you might want to ask at the appointment. If you'd like to chat with them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

I hope you have some news soon. Do let us know how you get on. 

Best wishes, 
Jenn
Cancer Chat moderator 

I don't have any answers for you or any advice but just wanted to assure you you are not alone as I am in a similar position and being looked at my 2 different departments - though I was not aware of the fact until I got a letter  out of the blue with the outcome from the Upper GI MDT meeting - apparently my CA19.9 level was raised when they were investigating for ovarian cancer and still raised when blood tests were repeated after 6 weeks.  - CT and MRI scans showed nothing of concern in July but they've advised they will repeat the MRI for my pancreas if levels are still raised in December.

Like you I find the whole situation very confusing but I suppose it is good that the hospitals are being so thorough. I'm holding onto the fact that raised levels in blood tests do not necessarily mean cancer but can have other causes. I hope everything turns out ok with you and wish you well with your ongoing tests

Hello,

Just wanted to say thank you so much for the above posts, it was comforting in a time of need. I have made some progress with my diagnosis, although has been a very long journey and isn't over yet.

I had the colonoscopy, which I found to be extremely painful and they had to stop after just 5 mins. They didn't see anything in the short colonoscopy I had, so they had to give me a CT scan instead to check for cancer further up, which I am still waiting on the results of.

But yesterday I finally heard the results of my MRI (after about 6 weeks) and it turns out that one of my ovarian cysts has ruptured and they think this is what has caused the CEA level to be so extremely high. I am now waiting for gynaecology to get back to me with next steps as they said I would need surgery to remove the cysts in the near future.

I am relieved as I think it is unlikely to be cancer at this stage and have another explanation for the abnormal CEA level, but I think I have a long wait ahead for surgery and have generally not been feeling too well both mentally and physically after all this. Will need some time to recover.

This forum has been a great help, so thank you. 

Best wishes,

Charlotte