A forum for any other issues around pancreatic cancer

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Rjohns
Posts: 6
Joined: Fri Mar 02, 2018 6:10 pm

Very scared a year on

Postby Rjohns » Thu Jul 11, 2019 8:42 pm

Hi i am 55 year old female. 15 months ago i had several symptoms including rib cage pains and yellow stools with oil on water. I pushed for a private ct scan which was thankfully clear.

Since then there have been the odd sharp pain in side and some heartburn along with spikes in temperature. Told by gp temperature due to menopause. Since mid April this year been getting knife like pain between left hip and rib cage plus pains at back of right rib cage. Diagnosed with type 2 diabetes about 5 weeks ago. Blood tests showed raised infection marker slightly raised liver function and potassium level. Kidney ultrasound done which was ok apart from liver cysts. I have pushed v hard for ct of abdomen but because bloods seem ok
And history of a lot of tests gp would only refer to private gastroenterologist for second opinion.

Gastroenterologist opinion is that there is nothing sinister going on. Daily pain at left rib cage tells me something is going on but because bloods are ok weight loss is not significant and gastroenterologist has said nothing sinister I am struggling to get gp to do more.

My fear that this is pancreatic cancer and the location of pain could indicate it's in tail of pancreas perhaps. I don't want to wait until more obvious symptoms such as jaundice appear. At a loss as to what to do. Pains getting me down.

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

Re: Very scared a year on

Postby curlysue » Fri Jul 12, 2019 9:37 am

Hi Rjohns
I know exactly how you’re feeling. It’s not a nice place to be. But I also know that worry and stress has made me hyper-sensitive to every twinge, burp, ache and sensation going on in my body. In my head, things I wouldn’t normally bat an eyelid at have suddenly become ‘symptoms’ and further ticks in the PC box. All adding to my sleepless nights and loss of appetite.
I’m currently waiting CT results following 2 years of intermittent bloating, constipation etc. Dr told me IBS on many occasions, but I was thinking it was more of a food intolerance. I was hoping they’d give me guidance or a referral down that route, but they weren’t interested. I’m sure they just thought me neurotic. All my bloods were coming back fine, so they decided to run tumour markers even though she said she knew it would come back fine. It didn’t. CA19-9 was raised so I’ve been referred to hepatobiliary. I know elevated CA19-9 doesn’t automatically mean cancer, and a normal level doesn’t always mean no cancer, but I know I would’ve been sent away from the GP again if my result hadn’t come back raised. You mentioned clear blood tests, do you know if they’ve run tumour markers? I had CEA level of 2 (normal) and CA19-9 of 43 (slightly elevated). If you haven’t had them, perhaps your doctor will agree to those, if not the CT scan? If they are normal, it may give you reassurance. If they are elevated, you will likely get a CT scan.
I would also recommend ringing the nurses at PCUK. I spoke to Nicky the other day, purely because I was stressed and panicking, and she was so lovely, but, more importantly, she was honest. I felt so much calmer afterwards.
I really hope you find peace x

Rjohns
Posts: 6
Joined: Fri Mar 02, 2018 6:10 pm

Re: Very scared a year on

Postby Rjohns » Fri Jul 12, 2019 11:30 am

Hi curlysue
Thanks for such a detailed reply. I know that I too am hyperaware but because I have a history of health anxiety I am worried that the GPS are dismissing the symptoms. It's worse now that consultant has said he doesn't think it's pancreatic cancer as this confirms their view.
I haven't had a test for tumour markers and I will ask but don't hold out much hope. I have tracked with a diary the symptoms to show them that the pain is daily. Surely they have to tell me what the plan is to find out what is wrong? I hope that the hepabiliary appt will give you answers to give you some relief.

Rjohns
Posts: 6
Joined: Fri Mar 02, 2018 6:10 pm

Re: Very scared a year on

Postby Rjohns » Fri Jul 12, 2019 5:50 pm

Just saw a doc and gave her a timeline of all dates where pain is present and indicated that pain is daily now. She gave me a copy of the letter from the gastroenterologist detailing his opinion. Problem is that there is an error in the letter which states that I haven't had pain in the last month. This is clearly not the case but I couldn't read the letter until after the appt. She prescribed amitryptiline for the pain and that was it.

Going to have to go back to doc who made the referral and point out the error because the daily pain is the critical point.

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

Re: Very scared a year on

Postby curlysue » Fri Jul 12, 2019 9:43 pm

Hi Rjohns

I was sent down the amitriptyline route too. Gave me a dry mouth so I came off it after 3 weeks.

Glad to hear you’ve been keeping a diary to refer back to. It’s all too easy to get muddled when one day rolls into another and there’s no improvement. Hopefully they’ll have a rethink when you correct the consultant’s report. Let me know how you get on x

Rjohns
Posts: 6
Joined: Fri Mar 02, 2018 6:10 pm

Re: Very scared a year on

Postby Rjohns » Mon Jul 15, 2019 4:14 pm

i have managed to get an appointment with a gp i have seen but not my regular gp (wouldnt be able to see her till mid August). Appointment is next Friday 26th but in all honesty it has crossed my mind to turn up at accident and emergency to see what they would do. It may not resolve this but i am at my wits end with worry.

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

Re: Very scared a year on

Postby curlysue » Mon Jul 15, 2019 7:28 pm

Hi Rjohns
Waiting is just awful. I’m not sure what to advise about A&E as it’s hard to know what reception you’ll get. Does your GP surgery do ‘on the day’ appts so you could be seen sooner than your booked appt? I feel for you because I am suffering from similar anxiety issues. I had my CT scan last Weds but have yet to hear. Part of me thinks (hopes) that must be a good sign, but another part worries something serious is wrong but isn’t straightforward and needs to go to an MDT for discussion. One thing’s for sure, people going through these situations could really do with professional support, not just left to their own devices and good intentions of loved ones xx

Hope76
Posts: 3
Joined: Thu Jul 18, 2019 9:55 am

Re: Very scared a year on

Postby Hope76 » Thu Jul 18, 2019 10:13 am

Hi all! I just very worried about my life.
Last dec she started to experience a lot of belching and in january we went to doctor and after a blood check just diagnosted wirh a little bit anemia.
Passed months the belching decreased but I noticed she develop about March something called Terry nails which is assiciated to DIabetes and other things. I though was about anemia but last month she start with fatty stools and searching for internet im really afraid.
Last week we went to doctor again to tell about that and sent to make some stool test. I said about I was worried but no say cancer word cause dont want afraid my wife but doctor said was no alarm symptoms to worry ( she doesnt feel any pain, jaundice or weight loss )
I know nobody here can make a diagnosis but information and suggestions would be apreciatte a lot.
Thanks all

PCUK Nurse Jeni
Posts: 1078
Joined: Mon Jun 14, 2010 1:30 pm

Re: Very scared a year on

Postby PCUK Nurse Jeni » Tue Jul 23, 2019 3:49 pm

Hi All,

Thanks for all the posts.

Hope76, if you would like to email our support service, then you will find the details in the signature.

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.

Rjohns - Have you had bloods done to check if you are menopausal? If not, maybe ask about this? Also, if you had a clear CT scan, this is positive. If the pain is not easing, then maybe ask for a referral to a pain clinic, who might get to the bottom of this? With the diabetes diagnosis, there are other reasons for a person to become diabetic - have you seen a diabetic nurse at the gp practice? That's quite important.

Is the amitriptyline working for the pain? Hopefully, the appointment on Friday will 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

Rjohns
Posts: 6
Joined: Fri Mar 02, 2018 6:10 pm

Re: Very scared a year on

Postby Rjohns » Mon Sep 09, 2019 12:14 pm

Hello
I am at my wits end. Since mid April 2019 i have experienced pain in left flank and within left rib cage. Since April i was diagnosed diabetic and have almost daily diarrhoea. I have pain at waist level and within right rib cage. Saw a gastroenterologist June/July who didnt think investigation was needed as he said he couldnt see any signs of pancreatic cancer. I havent lost weight significantly since April and my most recent blood tests show slightly elevated sugar level and slightly elevated liver function levels (slightly elevated is gps term) but within range. Since mid Aug have been experiencing episodes of loss of appetite and very recently days when i feel really awful. Gp will not investigate further yet the pain is daily. I cannot get on a bus unless i have planned my bathroom visits beforehand and i believe the loss of appetite is linked to something sinister going on in the liver.

i have an appointment on Friday to discuss the blood tests but i am sure as they are in range that gp will not want to invesigate further. Because i had a ct scan 15 months ago because of pancreatic cancer scare the gp wont do one now.

What do i do to get further investigation?