Time is ticking!

[Dandavie]

It has been 3 long weeks since we were told the devastating news that my father in law has inoperable PC. This information was given to us 8 days after he was admitted through A/E with abdominal pain, and was found to have very abnormal liver function tests results and a very high blood sugar level. The usual tests were performed over the next week (ultrasound, MRI and then CT scan). During his time in the hospital he developed obstructive jaundice and had an uncontrollable itch as well as the usual change to bowel habits.

We patiently waited for a call following the MDT to discuss any options available. The call came at the end of the following week informing us that he had to get an ERCP the following week. The stent was unable to be deployed on first attempt but they managed second time round 4 days later.

Yet another wait for the pathology results of the tissue samples taken- INCONCLUSIVE!!

He has now to return in a weeks time for an EUS for more samples to be taken.

By the time we have the results from these (if any answers given) it will be almost 6 weeks since we were given the devastating news and the only action taken is the stent insertion.

His itching has subsided although not completely and his colour is slowly returning back to normal but he still has no appetite and is loosing weight rapidly.

We have yet to be told what stage the cancer is, or formally spoken to any specialist as the only dealings we have had at the hospital is the brief visit before and after each procedure before discharge.

We have lots of questions that people who have knowledge and experience within this forum could answer which could help us ask the right questions and get the best treatment possible.

Would the enzymes help him with his appetite/ weight loss? Do these have to be prescribed by the specialist team or can his GP give him them?

Is it normal for people to have waited this length of time before sitting down and discussing what options if any he has?

Does the jaundice have to be completely away before chemo can begin ( if this is an option)?

I work in the NHS and understand how things work and the times it takes for things to happen but it will be 6 weeks after hearing those words INOPERABLE and MALIGNANT and yet still no answers.

[Slewis7313]

Hi Dandavie and welcome to the forum. I am really sorry to hear that your Father-inLaw has been diagnosed with Pancreatic Cancer and I will give you my personal 'take' as far as your questions go.

When I was diagnosed with inoperable Pancreatic Cancer, I was prescribed enzyme medication (Creon) at the meeting and took them home the same day. They certainly seemed to stop my weight loss in it's tracks. I believe your GP should be able to prescribe these. Whilst critical to Pancreatic Cancer sufferers, they are otherwise not in any way dangerous and as such should be prescribed without delay.

I do not have a stent (I never had jaundice), but I understand that the jaundice symptoms need to be cleared up before chemo can start. That said, I had my first Oncology meeting to discuss the way forward 2 weeks after diagnosis, with chemo starting a further 2 weeks after that (even though Xmas / New Year holidays delayed the start by mutual consent).

Sounds like you need to rattle some cages as 6 weeks without an Oncology meeting is far too long. Apart from the obvious need to get a personal action plan in place, the Oncologist will be able to explain what to expect and hopefully reassure you by elaborating on what is going to happen. I went into my first meeting feeling afraid, primarily because I did not understand anything about Pancreatic Cancer and it's treatment but left the meeting feeling quite upbeat as I felt they were working in my best interests and would help me in whatever ways they could to make this journey easier. They don't need to wait for the jaundice to go before meeting....... The time could be used to have a treatment plan 'ready to go'.

Inconclusive biopsy results are not unusual with Pancreatic Cancer. I have never had a positive biopsy, but I certainly have Pancreatic Cancer. The MDT sometimes have to look at all factors and without a biopsy, make an informed decision based on the tumour acting in a cancerous manner.

Good luck to your Father-in-Law and yourselves in moving this forward.

Steve

[J_T]

Hi and welcome. Sorry to hear another family has to deal with this devastating diagnosis.

My husband's experience is similar in some ways. Jaundice and the terrible,terrible itching. CT and diagnosis. Failed ERCP and subsequent insertion subcutaneously. No appointments or information imparted, we had to involve our GP, who was brilliant at getting some action. When we did see someone no mention of creon ( we were not at a specialist centre and in hindsight I think we should have found one). The first time I heard of them was on here and Jeni gave us lots of info. We asked for the faecal elastase test a few times before we got it because our onc thought as Ray had no diarrhoea he didn't need them - wrong!

In my experience you will need to be a strong advocate for your fil and working in the NHS should be a benefit to you. Question, question, prod and insist. Make them have it in other words.

My husband died 12 october last year, 7 months after diagnosis.

Wishing you good luck!

[InfoForMum]

Hi there,

I'm not often back on the forum these days, but wanted to jump in and add my voice to those urging you to make a fuss. Steve and Julia will tell you I was far from a wallflower when dealing with delays round my Mum's MDTs and docs. I made a rip roaring nuisance of myself with consultant's secretaries and kept quoting national benchmarks for cancer diagnosis and referral to them. Asking when you will have a referral to your local specialist PC center (if your hospital isn't one) is also often a spur.

I resorted to seeking our 2nd opinion first in the end. It made some folk grumpy, but what the heck.

Good luck with settling down symptoms - there's a long thread of mine here on easing itching symptoms and how slowly (compared to expectations) jaundice symptoms can clear.

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=4&t=1146&hilit=+itching

I hope it, or perhaps other bits, might help.

Take care

Sarah

[LMD]

Hello. So sorry to read about your father in law.

From our experience, the jaundice did need to 'go' before chemo began. My father takes creon but they don't seem to have, in his case, helped him put weight on. That said, he has been taking them for several months so they must (hopefully) help with something. The nurses here are incredibly helpful (& kind) and very knowledgeable and may be able to help you with any specific questions. The phone number is on this site.

This forum is so helpful too (Thank you to all who post on here)

Thinking of you all x