Scared and desperate

[curlysue]

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]

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]

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]

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]

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]

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]

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]

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]

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]

How are you Curlysue?

Thinking of you x

[curlysue]

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]

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]

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]

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]

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

[curlysue]

Aww, thank you Lullabyebye. Still not heard back regarding CT results but feeling slightly more optimistic after an appt with Gastro Dept at a different (private) hospital yesterday. Consultant felt quite sure that I would’ve heard back within a week, if it was serious, based on it being an urgent referral. He assumes my file is sitting on a pile of other ‘normal results’, so hoping he’s right. He was a little baffled (to say the least) that my GP even ran the CA19-9 test as my symptoms are lower GI, not upper. Obviously I need further investigation (sigmoidoscopy booked for 2nd Aug) but he feels everything is pointing to a functional bowel disorder (that’s exasperated by antibiotic use - hence the timing of the flair-ups) so has instructed me to follow a FODMAP diet in the meantime.

I’ll keep you posted with any new developments, but at least I can eat and sleep easier (heatwave permitting ) for now.

Once again, thank you so much for your support.

To anyone else reading this, the nurses on the helpline are fantastic. I’ve spoken with Nicci twice, without really knowing why I was even ringing them, or what I hoped to gain. She is so professional, caring and compassionate, it makes such a difference if, like me, you’re finding the whole NHS process very uncaring and uninformative xx

[PCUK Nurse Jeni]

Hi Curly Sue,

Thank you for posting your update.

Its so good that you are feeling more positive after the consultation, and that further investigations are pending. It is good to have been given some reassurance also regarding the CT scan results, and the potential "whereabouts" of these.

I am so pleased for you that you are feeling a little better about the whole process. Thank you so much for your kind comments about Nicci - they are all true of course!

I will ensure that Nicci is aware of your feedback.

I hope the diet also helps with some of your symptoms.

Kindest 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]

Hi Curlysue, so glad you’ve seen someone who has reassured you a bit. Hopefully you will get the results of the CT scan really soon so you can be fully reassured.

Yes please do keep us updated.

Take care x

[curlysue]

.

Edited August 17, 2019 by curlysue

[curlysue]

curlysue wrote:

Update to say the sigmoidoscopy was clear, but I’ve still heard nothing from the CT scan I had over 5 weeks ago. My GP is now saying a 6-8 week wait is not unusual. At the scan, the radiology nurse said I’d hear “probably by Friday (i.e. 2 days after) and absolute tops within two weeks.” The Hepatobiliary admin (?) told me over the phone it would be “a minimum of two weeks”. My gastro consultant (at a different hospital) said he was sure it would’ve been within a week if it was anything serious. So much confusion. Still, I’m hoping ‘no news is good news’ holds true.

I’m trying to follow a FODMAP diet for now, until I see Gastro again on 4th Sept.

Against my better judgement, I rang the hospital I’m under for hepatobiliary. She couldn’t even tell me if my scan had been looked at. She told me I “will be in the system somewhere. Possibly referred to a different department” but that no timescale could be given as to when I might hear. She could offer no reassurance that the length of time it was taking could indicate it wasn’t cancer. Feeling some of the old panic setting back in, and kicking myself for even ringing them.

[Borobi]

Hi Curlysue.

Sorry that you’re still waiting. It does seem a very long time to wait. Was it your GP who referred you for the scan? If so could you ask them to chase it? it’s probably easier for them to get information.

My partner was referred under the 15 day cancer target. He got the phone call from his GP 3 days after his scan - and that included a public holiday! So it would be nice to think that as you haven’t heard yet that it means good news. But I know that it’s not necessarily the case as not everywhere is as organised as our local services.

I hope you hear soon. Keep trying to look on the bright side.

[curlysue]

Thank you Borobi. I returned from work today to a very short, but oh so sweet letter from the hospital. My CT results showed “no significant abnormalities” so they’re discharging me back to my GP I’m so, so relieved. There’s no answer as to why my CA19-9 levels are/were elevated. I will continue on my journey to try to resolve these digestive issues that have been affecting me for the last two years.

Thank you to Lulla Bye Bye, Borobi, Nurse Jeni and the wonderful Nurse Nicci. You were all so willing to offer support and kind words when I was feeling lost and scared. I am truly, truly grateful.

Borobi, despite what you’re coping with, you still made time to offer kindness to a complete stranger. You are a gem. I wish you and your partner the best of luck for the future. You will be in my thoughts xx

Lulla Bye Bye, to read your messages of support, and to know you were thinking of me, gave me

enough light to chase away the worst of my despair. A million thank you’s xx

Nicci, we had two phone conversations when I was at my lowest point, and you will probably never comprehend the impact your kindness, calmness and understanding had. You were honest with me, sharing your experience but without giving false hope. You were my angel, just when I needed one. There are no words xx

[PCUK Nurse Jeni]

Great News Curlysue!

Very pleased for you!

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Lulla bye bye]

So pleased to hear your wonderful news. Sorry you had to go through such an anxious wait to get the all clear. Lots of love xxx

[mummy.may]

hi. i wont say try not to worry. i can read your fear in your words.

this is my first time using this sight. i promised myself, that i would join when i was 5 years post op, and here i am. i hope it comforts you. and yes apart from disabilities not cancer related, i am FINE.

Can i suggest that if you are going to google, google the helpful stuff about PC . like diets if your suspicions are correct then you have one hell of a fight on your hands. you will need to be strong and fit to give you the best chance of a good recovery.

there are people 12 years post op. and lots of 5 years like me are still going. try not to feel so desperate. this is a fight that is winnable, so prepare for battle now. eat well even is you don’t feel like it. your body needs it even if your mind is telling you that you are not hungry. eat well be strong and lets all hope you don't need this forum in the future. Bless you. x