Worried about Pancreatic Cancer

In January my husband saw a nurse about intense stomach pain. They looked at his record and were shocked to see that 2 years ago he had calprotectin levels of over 1000 and nobody had referred him for investigations. He was referred to gastro and told he would need a colonoscopy to look for ulcerative colitis or crohns disease, we are still waiting for this. But a week later he was in agony, unable to move, so I took him to A&E. They did bloods and xrays and said it looked like something was happening with his pancreas, and he would need a CT scan. They were supposed to do it that day but due to strikes it was delayed by a week. 

Before the results were back they booked him in for an MRI. The CT scan then came back with a lump in a tube of the pancreas. They think hes had pancreatis at some point, which has then led to this. So they booked another MRI to take a closer look. The day aftrr the 2nd MRI they rang him and said he needed to come to hospital straight away. They told him they still don't know what's going on, but it looks like it could be either a serous tumour or pancreatic cancer and he would need another CT scan and a PET-CT scan. They said we would then come in for a consultation and have a plan of action.

They did the second CT scan the next morning, and called him the next day to say (as a seperate issue) he had a collapsed lung, which was half the size of the other! He was rushed in and he had bloods and an xray which showed it wasn't collapsed, but had air trapped around it (pneumothorax). So they are currently monitoring that with weekly xrays. He is due his next one on Friday.

Yesterday he had his PET-CT scan at a cancer centre and we thought finally we would have some answers. A specialist nurse called him that afternoon and said they now need to do an endoscopic ultrasound and take a sample and will need more bloods. 

He asked whether this was to look a bit closer at the possibility of cancer or look elsewhere. She said they are looking for cancer, but she can't say one way or the other at the moment if it is cancer. 

He is young for pancreatic cancer (33 next month) but I'm more worried now than I was before the PET-CT scan. I thought that would give us answers, but we still don't know what's happening. I hate being in limbo without answers. I just hope they push this through as quickly as they have done everything else. 

I was wondering if anyone else could share similar experiences or could offer any insights into this. 

Thank you so much for taking the time to read all this. 

  • I'm so sorry to hear about all the health issues your husband has been having and I understand the worry of it all. I've been under investigation for pancreatic cancer myself, although my story is very different to your husbands. I was sent for CT scan after I had raised tumour markers - CA19.9, although I did not know this at the time as I had actually been referred for gynae issues and they were investigating an adnexal mass found in the ultrasound. Blood tests were repeated 4 weeks later and they wrote to tell me that my CA19.9 levels had increased further, indicating a possible problem with the pancreas, after levels increased again for the next repeated blood tests I was put on the 2 week pathway with the GI Clinic at the hospital and sent for an MRI. I was also referred to a specialist liver unit at a different hopsital. For myself nothing was suspicious was found on either the CT scan or the MRI. Next step was the endoscopic ultrasound - I was told that this enabled them to look more closely with the camera and check the ducts more accurately than MRI or CT scans aswell as to biopsy any 'suspicous tissue' so that any tissue/lesion/tumour could be examined and analysed. Since you mention 'take a sample' I suspect that the reason for your husband is similar - to help with analysis and diagnosis.

    I hope all goes well for your husband and that you get answers soon. I'm sure they will push everything through quickly.

  • Thank you so much for your response. I'm sorry to hear everything you have been going through. We have had a call today to say his endoscopic ultrasound will be next Thursday afternoon, which was the soonest appointment they could give us, as it was sent as an immediate referral. So we have another week to wait for that, and then who knows how long for the results. I hope you also have answers soon. 

  • I imagine you will get results fairly quickly. I was actually told that they had found no signs of cancer after the procedure and given a letter/report of the results but told the consultant woud confirm everything. They did find gallstones and I'm hoping they are the cause for my blood results but I'm told I still need the gastroscopy repeated at the specialist unit .I was told initially it would likely be 6-7 weeks wait for that appointment as after the MRI my status was no longer 'urgent priority' but downgraded if you like to 'priority'. I'm at the 7 weeks point now and not heard yet.

    I hope all goes well with your husband's procedure next week. I really don't remember much about it but know I had no pain during or after. I was there at 8am and was pretty sleepy for the rest of the day but otherwise fine. wishing you both all the best

  • Oh that's great news, I hope you hear soon and everything goes well. 

    Thank you, everything else has been so quick, the week long wait will feel very long, but hopefully results will be quick and we will finally have some answers, and nit more questions.