Worried

[SunshineH]

Good morning, 

 

I am reaching out because I am looking for some support. I have lurked for around a month; reading past posts and people's experiences. Firstly, I'd like to say that this discussion forum is such a wonderful place and an amazingly supportive environment. I really don't want to offend or cause distress to those on here who have PC or have family or friends with PC. If anyone does feel in enough of an ok emotional space to read and/or reply then I thank you in advance for this.

 

 

I am female, 44. Married with two children.

 

About 18 months ago, I started with a strange moving sensation internally. It would feel like it would 'pop' in and out of place and I thought that it felt under my ribs, to the left. It would happen spontaneously if I bent over, twisted, or, specifically, if I applied pressure from the left side of abdomen then I would feel something moving inside me. 6 years ago, I had an emergency bowel op (perforated during a car accident) and I had some after effects with what the specialists felt were adhesions so I assumed that it was this but that it just felt a bit different to before (however, it had been a good 3 years since I'd had any other effects from the op).

 

Then, over the last 6-12 months, I have noticed that I rouse from sleep (but I'm not fully awake) with flashes of pain in my abdomen. This would happen mainly if I moved onto my front, was laying on my front or moved from front to back. It was like a sudden surge of pain but I was half asleep so again it didn't properly register.

 

In the last 6 months - I have felt, what I can only describe, as if I am lying on a marble when laying on my left side - beneath my left ribs. To begin with, it wasn't all of the time and I wrote it off as my pyjamas had ridden up or I was on an uncomfortable bit of the bed. In my half sleepy state, I imagined it was a spring pushing into me but we don't have a sprung mattress. This has increased to happening every night if I lay on my left side. For the first 10 seconds or so, it's fine, and then it's like gravity is pushing whatever it is against the inside of my ribs.

 

Again, over the last 6 months, I have also noticed that if I apply pressure to my abdomen e.g. tight trousers, tights worn too high, carrying heavy things high up I would get pain and an uncomfortable sensation in my upper abdomen. This has worsened to being very tender. I am now unable to lie on my front, wear a bra later on in the day or even cross my arms without some pain.

 

At the end of October, I noticed that my left collar bone looked different (less defined) and more swollen on my chest. I'd felt along my collar bone and felt a small lump (size of a lentil/pea) and was worried, as I'd stupidly Googled and discovered that the left supraclavicular lymph node is highly indicative of an abdominal malignancy. The night time pain had also increased.

 

The GP did basic bloods but also CA125, as my maternal grandmother died at 57 of OC. All bloods came back normal. I was then referred for an ultrasound of both my abdomen and pelvis, which I had in December due to delays due to my twins getting Covid. The ultrasound was clear but the radiologist advised that they had been unable to get a view of the tail of my pancreas. She tried repeatedly to do this, as she knew I was worried. 

 

I should say that by the end of November, I was experiencing more frequent pain. Not just at night time.  This has continued and some days are worse than others. The pain is definitely not there as much during the day and seems to go when I stand up and move around but my job is sedentary and I do feel uncomfortable/in pain at times during the day whilst doing that. This can go through to my back along the midline - again it feels like a pressure or an uncomfortableness.

 

I feel like I have something under my left rib; a mass. It's an uncomfortable sensation most of the time. My pain is getting worse and I dread going to bed. I am permanently tired and, most days, need an afternoon nap but could easily fall asleep again in the morning.

 

I am having floating stools 4/7 days and they seem smellier. No change to urine colour, no weight loss, no symptoms of jaundice or diabetes. My eating is slightly less (but that's probably due to anxiety levels) but I have noticed that my stomach is making terrible noises approx. 3 hours after eating. I have been having trapped wind and the urged to force myself to burp. Both of these things have been going on ages. 

 

I think that I can see an indentation in my abdomen where I think the mass is. It matches where I get the moving sensation and some of the pain. I'm overweight and it seems like the fat is slightly sucked in in quite a precise spot and it is not the same on the other side.

 

I've now seen a Gastroenterologist, who has referred me for an MRI hopefully next week (I am fortunate to have private health care).  However, I am extremely anxious that I have cancer on the tail of my pancreas. I am finding it really hard to function and I know my children are now picking up on my worry. 

 

I am trying everything possible to think of what it might be other than PC but I'm at the point now where I feel my mind has been invaded. I know how powerful the mind is and the impact of anxiety plus the mind-gut interactions. I'm also aware that I'm young(ish). 

 

Thank you so much for reading.

Helen
 

 

[SunshineH]

I've been booked in for an MRCP on Thursday. I'm filled with worry about this. I keep thinking that the consultant must actually think I have pc. 

[PCUK Ellie]

Hi Sunshine, thank you for keeping us updated. It's good to hear you've been booked in for an MRCP tomorrow - I appreciate this might feel worrying, but it's positive that you're investigating what's behind your symptoms, and hopefully the results will give you some answers, whether that's in the form of reassurance or next steps. We've got information on our website if you're worried you might have pancreatic cancer, including information on how it might be diagnosed. You're also very welcome to speak to one of our specialist nurses if you have any questions or concerns. You can call the Support Line on 0808 801 0707 or get in touch by email. 

 

I know it must be a very anxious time for you - not knowing is a difficult thing. Thinking of you for your MRCP tomorrow, and please do let us know how you get on if you'd like to. 

[SunshineH]

On 1/26/2022 at 4:12 PM, PCUK Ellie said:

Hi Sunshine, thank you for keeping us updated. It's good to hear you've been booked in for an MRCP tomorrow - I appreciate this might feel worrying, but it's positive that you're investigating what's behind your symptoms, and hopefully the results will give you some answers, whether that's in the form of reassurance or next steps. We've got information on our website if you're worried you might have pancreatic cancer, including information on how it might be diagnosed. You're also very welcome to speak to one of our specialist nurses if you have any questions or concerns. You can call the Support Line on 0808 801 0707 or get in touch by email. 

 

I know it must be a very anxious time for you - not knowing is a difficult thing. Thinking of you for your MRCP tomorrow, and please do let us know how you get on if you'd like to. 

 

Thank you Ellie. I really appreciate your reply and for thinking of me. I have had the MRCP with contrast today so I am pleased that that is now out of the way. I will await my results, which will hopefully be next Wednesday, as that is when I am booked back in with the Consultant. 

 

For now, I feel a bit better as I am able to spend time with my husband again, as he had tested positive for Covid and so I had to isolate from him and then have a PCR to ensure I was negative before having my MRCP. 

[Scottishlady]

Hi @SunshineH just wondering how your scan went? Have you had any update.  Been following your story and wishing you well.