A forum for any other issues around pancreatic cancer

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
curlysue
Posts: 14
Joined: Mon Jul 08, 2019 7:48 pm

Scared and desperate

Postby curlysue » Wed Jul 10, 2019 8:03 am

For 2 years I’ve been suffering from prolonged bouts of bloating, indigestion and constipation. Many visits to GP kept giving diagnosis of IBS. All the usual blood results were coming back normal, and the doctors seemed to think I was just being stubborn over the diagnosis, but it never felt right. Long story short, they’ve now run tumour marker tests and CA19-9 came back elevated. GP now saying it’s out of their hands as I’ve been referred to Hepatobiliary. I have a CT scan today but I’ve already convinced myself of the outcome. I don’t get to speak to anyone until the results of the scan are in. I know you shouldn’t Google, but with no professional to currently talk to, that’s exactly what I did. I know no-one can tell me I’m going to be ok, but I have barely eaten or slept in 1.5 weeks with all the worry. I keep looking at my amazing 7-year old and thinking how I’ve let her down and she’s going to have to face the future without her mummy. I tried MacMillan, and the lady was lovely, but could only suggest I find things to distract myself. That’s impossible. I wish I didn’t feel this way, but I do.

I’m not sure why I’m even writing this post, but any words of advice or experience might just help. Thank you in advance.

Lulla bye bye
Posts: 8
Joined: Thu Apr 04, 2019 7:06 pm

Re: Scared and desperate

Postby Lulla bye bye » Wed Jul 10, 2019 3:24 pm

Hi Curlysue
I’ve never posted on this forum before but just saw your post and can see you are in such a fearful, sad place.
I totally understand that it’s impossible for you to distract yourself when you are thinking the worst.
Really hope someone, who can provide a bit more info on what your results so far may mean can come on and post. When do you get your scan results? I understand that the waiting for results is incredibly difficult and the mind can be your worst enemy at times like these.
Thinking of you
Lots of love x

curlysue
Posts: 14
Joined: Mon Jul 08, 2019 7:48 pm

Re: Scared and desperate

Postby curlysue » Wed Jul 10, 2019 4:47 pm

Hi Lulla bye bye

Thank you for your kind words. I had the CT scan (with and without contrast) earlier today. The door was ajar afterwards and I sat outside waiting for my canula to be removed. I glanced up and saw the nurse/radiologist (who I’d spoken to about my worries when she put my canula in) looking intently at the screen displaying my scan, then dropping her head onto the desk. I asked her about it when she was later taking out the canula, and she said she wasn’t trained to report on the findings. All the advice she gave me (out of kindness and caring) was about different types of pancreatic cancer and reassuring me there were several treatment options depending on the type and grading. Her heart was in the right place, but all I could hear was “you have cancer”. Obviously she didn’t say that, but (having seen my scan) all her words and actions pointed that way. She said I should have the results in the next two weeks, probably sooner. Absolutely dreading the call asking me to go in.

PCUK Nurse Jeni
Posts: 1075
Joined: Mon Jun 14, 2010 1:30 pm

Re: Scared and desperate

Postby PCUK Nurse Jeni » Wed Jul 10, 2019 4:52 pm

Hello Curlysue,

I am sorry to hear that you have had issues for some time, and have been having further tests to assess what is going on. It must be an anxious time for you.

I am sorry that you felt like you had no health professional to speak to - we would be more than happy to have a conversation with you regarding what is going on should you wish to make contact with us.

We have a freephone phone service or there is also an email service - the details are in the signature below.

Please don't hesitate to reach out - we are here to help.

Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Lulla bye bye
Posts: 8
Joined: Thu Apr 04, 2019 7:06 pm

Re: Scared and desperate

Postby Lulla bye bye » Wed Jul 10, 2019 8:05 pm

Bless you Curlysue
Will hold you in my heart mind and prayers as you await your results. Really hope you manage to get some sleep in spite of your anxious thoughts. Do you have family and friends you can talk to/lean on as you wait? If not I am more than happy for you to contact me.
Lots of Love xxx

Borobi
Posts: 5
Joined: Wed Feb 20, 2019 9:23 pm

Re: Scared and desperate

Postby Borobi » Wed Jul 10, 2019 9:55 pm

Hi Curlysue

The waiting is the worst part.

But because there is something showing on your scan doesn’t always mean you’ve got cancer - it’s hard to tell from a scan as there can be benign tumours as well.

My partner was diagnosed early this year and in the weeks between the scan and final diagnosis I looked at all the depressing stuff on the internet, convinced it would apply to him.

But he’s doing well on chemo and his oncologist is very positive. It’s not all doom and gloom.

I’m sure that the nurses here will be able to help you and I hope you get your diagnosis soon.

curlysue
Posts: 14
Joined: Mon Jul 08, 2019 7:48 pm

Re: Scared and desperate

Postby curlysue » Thu Jul 11, 2019 2:36 pm

Thank you Borobi, Lulla bye bye and Nurse Jeni for your kindness and compassion. I’m really on edge today, scared that my phone could ring any second to ask me to go in for results. I know it’s going to happen at some point, but my mind says the longer the wait, the less likely it is to be serious. Probably got that completely wrong, but still... I wish the medical professionals had made some initial contact to let me know the processes. I’m likely to be stressing myself out over unnecessary things. I don’t know how people cope with things like this. My head and stomach are in a mess before I even know what’s wrong 🙄

Borobi, I’m so pleased to hear your husband is doing well. I wish all the best for his continued recovery and for you to have the strength to accompany him through the journey x

Lulla bye bye, thank you for taking the time to reply to me and for the kind offer to get in touch. I’m analysing every single sensation in my body at the moment to see what it could mean. It’s crazy, I know. Knowing there are people like you, Borobi and Nurse Jeni (plus lovely Nurse Nicki on the telephone) willing to offer their time, understanding and kind words to a complete stranger fills me with so much gratitude. A million thank you’s X

Lulla bye bye
Posts: 8
Joined: Thu Apr 04, 2019 7:06 pm

Re: Scared and desperate

Postby Lulla bye bye » Fri Jul 12, 2019 3:39 pm

Hi Curlysue
How are you today?
I have been thinking of you and having a bit of a look on the internet re raised CA19.9 tumour markers. I have found some medical papers written that talk about some patients who have had raised CA19.9 tumour markers due to gallstones and pancreatitis.
I know you are preparing yourself for the worst but I just wanted you to know that there maybe another explanation for your result of raised tumour markers.

curlysue
Posts: 14
Joined: Mon Jul 08, 2019 7:48 pm

Re: Scared and desperate

Postby curlysue » Fri Jul 12, 2019 9:57 pm

Thank you so much Lulla bye bye. It’s so lovely of you to be looking into this on my behalf. I must admit, I’ve pretty much exhausted the records of Dr Google. I even found 2 reports where lactose intolerance and heavy tea consumption affected levels. They’re just heavily outweighed by more sinister reasons. It seems I’m a bit of an odd case where the CA19-9 is the reason I’m being referred, without many of the usual symptoms. From what I’ve read, most people seem to have endoscopy/ultrasound/CT first then the tumour marker test.

I’m trying to keep my spirits up and will relax a little now it’s the weekend because I know the hospital won’t ring. I’ve managed a couple of good nights sleep, and am back to a reasonably normal eating pattern - albeit doll sized portions.

Thank you for thinking of me, it means a lot x

Lulla bye bye
Posts: 8
Joined: Thu Apr 04, 2019 7:06 pm

Re: Scared and desperate

Postby Lulla bye bye » Sat Jul 20, 2019 2:09 pm

How are you Curlysue?
Thinking of you x

curlysue
Posts: 14
Joined: Mon Jul 08, 2019 7:48 pm

Re: Scared and desperate

Postby curlysue » Sat Jul 20, 2019 5:24 pm

Hi Lulla bye bye
It’s so kind of you to be thinking of me, thank you. I’m coping a little better mentally and am managing to eat a bit - more because I know I need to than because I want to. I am sleeping a lot better now.
I still haven’t heard anything about my CT results. At the start I was scared of the phone ringing because I was convinced an early call would be bad news. However, as time’s gone on, I’m starting to worry that it’s a bad sign as I know they have meetings about complicated cases. It’s been 10 days now.
Having a lot of bloating and discomfort in my tummy, but I’m not sure how much of that can be attributed to stress and not eating enough.
How are you doing?
X

Lulla bye bye
Posts: 8
Joined: Thu Apr 04, 2019 7:06 pm

Re: Scared and desperate

Postby Lulla bye bye » Sun Jul 21, 2019 9:46 am

Hi Curlysue, glad you’re sleeping and eating a bit better. The waiting for news is so difficult and you probably don’t know where to put your mind. Hoping you will get some news soon. I’m good thank you :)
Will be keeping you in my thoughts
X

PCUK Nurse Jeni
Posts: 1075
Joined: Mon Jun 14, 2010 1:30 pm

Re: Scared and desperate

Postby PCUK Nurse Jeni » Tue Jul 23, 2019 3:57 pm

Hi Curly Sue,

Please see my post in another thread about timings for CT scan results.

Hopefully,you will get some news soon.

Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

curlysue
Posts: 14
Joined: Mon Jul 08, 2019 7:48 pm

Re: Scared and desperate

Postby curlysue » Wed Jul 24, 2019 11:25 pm

Thank you for your reply Nurse Jeni. I’m unsure how to search for your post about CT result waiting times. When I clicked on your user name it said you have posted over 1000 comments and I don’t know how to find the specific one you’re referring to. Are you able to assist please?

Many thanks x

Lulla bye bye
Posts: 8
Joined: Thu Apr 04, 2019 7:06 pm

Re: Scared and desperate

Postby Lulla bye bye » Thu Jul 25, 2019 12:24 pm

Hi Curlysue
I think I found the post where nurse Jeni mentioned CT results. I’ve pasted it below:

Curly Sue, pleased you were able to speak to Nicci. In terms of your CT report, then can you call your gp to see if they have had the results yet? Or perhaps by now, you will have the results? Have you been made an appointment to go back to be given your results, or is the gp going to do this? Its quite normal for CT results to take 2-4 weeks, unfortunately. Generally, they are reported within the 2 weeks, but sometimes it takes longer.

X