Never been more afraid in my life

[Richietosh]

Hello.

I am 30 years of age and relatively healthy

A few months ago, a noticed oily stools. And eventually I got an appointment to see a gastroenterologist who did blood tests and stool tests.

All my tests came back. My bloods are unremarkable, kidney and liver is ok, I’m not a diabetic. But my faecal elastase was incredibly low showing severe pancreatic insufficiency. The doctor told me not to worry as there are many causes for this and my low result was something he has seen in other people before. and arranged an urgent CT scan for me and put me on Creon which is kind of working.

I’ve never been into hospital before 2 days ago when I had my first ever ct scan with contrast at 5:35pm on 31st July 2019.

I am terrified on what will be found on the CT scan. And I’m so confused because apart from oily stools I’m not in any pain, I don’t have jaundice, I don’t feel unwell, I’m a small thin and light person but I’ve not lost any weight it’s remained consistently the same for years now and I’ve always been small and skin and bones. But more than anything, I’m only 30.

I’m just convinced that I will be phoned up shortly with horrific news of pancreatic cancer. And I don’t know what to do while waiting for the results. I hope someone can offer me any words of hope or comfort in the worst time of my life since my Nan died. It also hasn’t helped that my girlfriend broke up with me the day before my scan.

I just don’t know what to do.

[Borobi]

Hi Richietosh.

I’m sorry that you’re struggling with the wait for your scan results. I’m sure you’ve googled the causes of pancreatic insufficiency and seen there are lots of causes, not just pancreatic cancer. I suggest you phone the helpline tomorrow as the nurses are very helpful and knowledgeable.

The wait is very hard, but try not to focus on what the worst case could be.

[Richietosh]

Thank you for your reply.

Yeah I think I’m just nervous as I’m only 30 and just don’t want this agonising wait.

Do the consultants tent to phone sooner rather than later if there is something serious or abnormal found on a ct scan?

Not received a phone call as of yet.

[PCUK Nurse Jeni]

Hi Richie,

Thanks for the post and welcome to the forums.

I am sorry to hear that you are having some symptoms of Exocrine Insufficiency, and have been started on creon. This definitely should help with the symptoms aspect of this - hopefully, you are taking a good dose? if not, we can certainly help with this.

As Borobi said, there are several reasons for Exocrine insufficiency - and its reassuring that you don't have any other symptoms. Its also good that you have had a CT scan, as this will show if there are any issues. In the blood tests, did they test your thyroid function do you know?

In the meantime, please do give us a call on the number below, or drop us an email if we can be of any assistance to you.

Kind regards,

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[curlysue]

Hi Richietosh

I totally understand your worries. I posted on here a few weeks ago out of sheer panic. I’ve had IBS symptoms for nearly two years, all bloods coming back ok, then suddenly GP ran tumour marker test and CA19-9 came back elevated so I was referred for an urgent CT Scan (with contrast). I went into panic mode and I didn’t eat or sleep for days. It was then that I posted on this forum - out of sheer desperation. At my wits end, I rang the nurses at PCUK and spoke with Nicci on two occasions. While she couldn’t tell me I’d be ok, she was so patient and kind, listening to my worries, discussing her nursing experience in an honest but thoughtful manner, and offering some much-needed balance to my absolute certainty that I would receive the worst possible news... I felt so much calmer after each call. I would definitely urge you to ring them even if, like me, you have no idea what you’re going to say when the phone is answered.

It’ll be four weeks tomorrow since my CT and I still haven’t had results. Since then, my initial gastro appt came around and the consultant was certain I’d have heard within a week (on an urgent referral) if anything sinister was seen. I know that’s not true of everyone’s experience, but I’m hanging on to it for now, hoping that no news is good news.

I hope all goes well and you receive a positive outcome.

Much love xx