Stage 4 - prognosis 6-12 weeks

Hi Shadow123, 

what a shock it must be to you all and I’m sorry to hear of his diagnoses.
I would think your dad is going to have a quite a few follow up appointments in the next few weeks which will give you the opportunity to ask More questions. I’m not sure they would be able to give you information over the phone due to GDPR. You could give his clinical nurse specialist a call when your dad is present which may give you some answers. 
A little background on my husband which may help.My husband was diagnosed with advanced PC late September 2022. Its going into lymph nodes and two major archeries. we have not been given a time frame but have not asked either. Has your dad discussed with you what treatment options they have Offered him like Chemotherapy or radiotherapy and when is his next appointment? has your dad had scans and a biopsy? Normally they would not be able to diagnose without those and offer treatment, also pain in the stomach and back is common with PC. I would also ask if dad is on creon( a enzyme replacement) with helps with digestion of food and helping to get as much nutrients from his food as possible. 

I hope this has helped a little. This forum is great for support and advice so you are in the right place.

im sure many more will reply with some support for you. 

Sending hugs

Chrissie 

Hi Chrissie,

Thank you for taking the time to reply.

How is your husband currently if you don't mind me asking?

Yes, dad had the camera down before Christmas but this was in relation to previous illness last summer. Unfortunately, he cannot have MRI due to shrapnel throughout his body from a work related accident. He has had ultra sound scans.

He mentioned an appointment on Monday at hospital with his consultant. My sister and I have told him we are going, no ifs or buts. He cannot go through this on his own. He has now said that they may just phone him which I find hard to believe? Pallative Care have tried contacting him but he has ignored the call.

He just seems like his normal self bar some tiredness. 6-12 weeks seems very soon and he does not present himself as someone who have just received this prognosis. Did your husbands symptoms come on quite suddenly once spread if you don't mind me asking? Appreciate this must be very hard for you to discuss so no pressure.

He has not mentioned any treatments options to us.

Many thanks.

Hi, no worries I’m happy to share if it helps.

Sounds like your dad is a tough nut… I would have thought he would be in some pain but it may depend on if the PC is secondary or his primary cancer. But most PC patients have tummy/back pain and problems moving their bowels. 

My husbands diagnose is a weird one. He had been having pains in his groin for a year, had an ultrasound and found nothing so he moaned again and they booked in in for a CT. A week before his scan Early august he started having stomach pains so the dr piggybacked the Ct to do stomach and groin which is when we found the PC.His diagnoses was given on the 26th September. His cancer is in his neck of the pancreas and has spread to his Portal vein and SMA( main archery) and lymph nodes making it inoperable unless chemo or radio can shrink it back or to make it less than a 90 degree angle on the SMA. 
Being honest his symptom’s have got better, No more back pain and able to go to the toilet( creon working) and less stomach pain but this may be because we are on top of this morphine. I think weight loss quickly is the common sign of PC, Gordon lost 20 kilos in 12 weeks. It’s really important to encourage as much as possible for him to eat. Easier said than done I know. 

Currently after 7 rounds of Chemo his tumour has not spread any further or got bigger but has not shrunk either which I’m quite upset about at the moment,

So he is about to embark on 15 days of radio and chemo combined. If this does not work I’m not sure where we go from here more than likely palliative.  

We have many phone calls from the registrars weekly so your dad may be correct. You can check his apts out by calling the outpatients clinic at the hospital your dad is under and they will tell you if it is a face to face apt or over the telephone.

Hoe are you holding up? Do you have any other support than your sister? 

hugs

Chrissie 

Sorry also meant to add the “ palliative care team” are also the pain care team. So if your dad is in any pain they are good people to sort out the meds quickly. 

Hi Shadow, I thought I’d share my husbands experience so far incase it helps make sense of anything. My husband had some routine blood tests taken  at the end of November as he had some back pain. The results came back giving our GP cause for concern and he organised a CT scan which due to a cancellation happened the very next day on 1 December. At 615pm on Friday 2nd December we received a call to tell us it was bad news…..we expected to be told he had a kidney stone but he was told it was pancreatic cancer, and it had spread to his liver, and his lung and his adrenal gland…..I was practically pleading with the gp to stop talking.

The case was then referred to the multi disciplinary team at the hospital and they discussed his case on Friday 8th December and we were told it was likely the diagnosis we had been given was correct but before they could agree the treatment options available they needed to do a biopsy and endoscopic ultrasound scan. This took place the following week and we saw the consultant face to face for the first time on 20th December.

we asked about the prognosis and we were told that it was inoperable and without treatment Terrys had “just a few short months” but with chemo there was the possibility of managing the symptoms (pain was now increasing), improving quality of life over the coming months and potentially extending life expectancy to a year, perhaps even 2. 

Terry started his chemo on 9th January and had a second cycle on 26th January he is booked in for 4 more sessions until the end of March. He sees the consultant every two weeks a couple of days before chemo dates to check he is well enough to go ahead with the chemo. We also have a telephone number for the cancer specialist nurse team and I call them if I have any queries or need to run back over what was said in the meeting. I would suggest if your dad is willing you could give them a call and your dad could give permission for them to speak with you on his behalf.

At the end of the 6 chemo sessions they will do a scan to see how things are but they said terry will know himself if it’s working just by how he’s feeling…..so far he feels much better with pain management under control than he did 4 weeks ago. He’s determined to outlive the damning timescales provided. 

I hope that this info along with Chrissies really useful info will give you some insight and pointers where to go. 

Thank you both so much for sharing your experiences. Sending love to you and your families.

Dad has agreed that I can be a point of contact for any calls/ appointments. We are hoping to receive appointment to come in and discuss next steps together with treatment available that dad can hopefully be with us a bit longer than the initial prognosis. Does this seem normal?

It just doesn't seem real. To look at him, he seems fine bar tiredness and loss of appetite. My sisters took him for lunch earlier and they said he just seemed so vacant and withdrawn. Kept needing to stop eating.

Thanks.

*sorry just have read. Appointment within the next 2 weeks. Does seem normal to have to wait? I would have assumed, asap or maybe I am being really naive?!

Hi Shadow, the appointment within 2 weeks, is a standard phrase used because  I think due to the NICE guidelines that require these cancer appts to happen within that timeline. You may get one earlier but you should definitely get one within the 2 weeks. Every wait for the next appt seems forever. I feel for you. Xxx

Hi,

sounds like you are making some progress with your dad. 2 weeks  sounds about right,  More than likely your dad will need a consultant clinic apt( outpatients) which normally only runs once weekly.  
You could give them a call and find out if they have sent a date or speak to your consultants secretary to move it along.

When my husband was diagnosed you would have not know he was Unwell  apart from a pain in the tummy. He was still eating and even worked 24hrs straight for the queens funeral a few days before his diagnoses. 

If your dad is struggling to eat, this is very typical for PC. I would say try and get any doctor( Gp or consultant) to prescribe Creon as quickly as possible. This will help him to digest food and help with maintaining his weight. My husband lost 20+ kilos in 12 weeks because he was not able to eat. 

hugs

Chrissie