My Mum’s just been diagnosed with stage 4 pancreatic cancer- no consultant is this normal?

[ForgotWhatIDidYesterday]

My dear Mum was diagnosed last week with stage 4 pancreatic cancer with secondaries in the liver and possibly lungs. She has been given between 3-6 months to live but I don’t think it will be that long.
She was diagnosed when she was admitted for pain but as it’s so far gone she has been passed to the palliative care team. However we have never seen a cancer consultant as she was on a diabetes and endocrinology ward. Her case was looked at an a MDT meeting but it was a cancer nurse who came to speak to her.
She is now home, I’m staying with her and she has been fast tracked so has short term carers every day and a district nurse twice a week but I could really don’t know who to liaise with both medically (she has a very complex medical history anyway) and for care and support. Her pain is still not really managed, she’s on slow release morphine as well as oral morphine (can have that 2 hourly) plus codine and paracetamol and something to help with nerve pain. She’s also eating very little. Do I go through the GP and social services?
I’m her only child and I live about 30 miles away. I’ve managed to get myself signed off work for 3 weeks and am staying but don’t really know how much longer I’ll be able to have. Any pointers or experience would be gratefully received as my head is in a spin.

Palliative care team would be my first point of call with this. They will have a consultant.
Do you have a hospice near you?
I'm sorry you are going through this.
My Dad only lasted 5 weeks between diagnosis and death.

Yes we contacted the GP when my mum had stopped cancer treatment and they arranged palliative care plan. I did speak to adult social services but they said there wasn’t much they could do at that stage. MacMillan help line was brilliant actually at giving us guidance. All the best.

I deal with people in this situation occasionally in my job and yes sometimes people are never referred to Oncology because there is no treatment that can be offered and straight to palliative care is the best option. If pain isn't being controlled then the palliative Nursing team need to come and review. Sometimes oral drugs aren't well absorbed and she may need an alternative.

I would ask for palliative care to refer to a hospice. Hospices can be really excellent. My mum died of cancer in a hospice. They also have teams which can come to her home to help with unmanageable symptoms. I wouldn’t worry about the lack of an oncologist - they provide cancer treatment, whereas I believe your poor mum needs help with pain and symptoms, not active cancer treatment.

I'm so sorry you're going through this.

I had a similar experience in 2021 - the GP was the first port of call for me for getting pain medication sorted etc.

One key difference was that she did speak to a consultant - but that was only because she had BUPA through her work. It didn't actually make any difference though as the entire process (from the first visit to the doctor to the end) was just 6 weeks.

One benefit of pancreatic cancer is that it's usually quicker, which hopefully means less pain.

I asked AI to help, and this is what it said:

Key things to do right now:
Contact the community palliative care team / specialist palliative care nurses — This should be your main port of call. They are the experts in managing complex pain, symptoms, and coordinating everything for end-of-life care at home. Even though the hospital handed her over via the cancer nurse and MDT, you can (and should) ask for a referral to the local community palliative care team (often linked to a hospice). They can visit at home, review her pain regime properly, and act as the central coordinator.Your GP and district nurse can make this referral quickly. Ring the GP surgery first thing and explain the situation — ask them to expedite contact with the palliative team and request an urgent review because the pain is still not controlled.
Pain management — Being on slow-release morphine + oramorph (2-hourly) + codeine + paracetamol + something for nerve pain is a lot, but pancreatic cancer pain (especially with liver mets) can be very difficult to control and often needs tweaking or different approaches. Don't wait — tell the district nurse or GP today that it's still not adequate. The palliative team can sometimes arrange a syringe driver, different opioids, or other interventions. They are much better at this than a general ward.
Who to liaise with day-to-day:
District nurse — your main hands-on nursing contact (they're already visiting twice a week — ask if this can increase).
GP — for prescriptions, overall medical oversight, and referrals.
Community palliative care team — for specialist symptom control and pulling everything together.
Social services / adult social care — yes, contact them too (via the council or through the GP/district nurse) for help with care packages, equipment, benefits (e.g. fast-track Attendance Allowance or Carer's Allowance), and respite. Because she's been fast-tracked, things should move quicker.
Many people in this situation find the palliative care team becomes the central "hub" who talks to the GP, district nurses, and social care so you don't have to chase everyone yourself.
Helpful organisations to call today/tomorrow (all free and very experienced with exactly this):
Pancreatic Cancer UK — specialist nurses who really understand this cancer. Helpline: 0808 801 0707 or email [email protected]. They can talk you through what to expect and how to get better support.
Macmillan Cancer Support — Helpline: 0808 808 00 00. Excellent for practical advice on coordinating care, benefits, and emotional support.
Marie Curie — for nursing help at home (day or night sits to give you a break).
Also ask the district nurse or GP about "just in case" medicines being left at the house, and whether a hospice at home service or day hospice is available locally.You're already doing an amazing job by being there and fighting for her. Take it hour by hour where you can. When you need to go back to work, be honest with your employer — many are understanding in these situations, and you may be entitled to dependant's leave or other support.

Thank you for all the replies, that is really helpful. I’ll contact the GP in the morning and ask for a referral. I’ll also contact the local hospice for support.

I thought there was no point in a oncologist, I’m just not sure Mum has fully taken in the diagnosis (she has but I think she’s just holding onto a little bit of hope) as she’s not really had a Dr talk her through it. The also said at first that they would need biopsies to confirm it but after the MDT meeting they said there was no point. I took that to mean that it was so obvious as it was so big and had metastasised but my Mum still thinks a little bit that they might have misdiagnosed

We have ‘just in case’ medication which I think is for a syringe driver and I’ll get in touch if we can’t manage the pain. Part if the issue is she tries keep the time between liquid morphine doses longer as she doesn’t want to (in her words) go doolally. I’ve talked till I’m blue in the face but she’s stubborn!

@ForgotWhatIDidYesterday. I am sending you a handhold, I was in a similar position with my Mum a few months back, no biopsies, the scans spoke for themselves. I made it my mission to make sure Mum was comfortable and pain free and the palliative care team were amazing at getting everything organised. As it was, Mum's decline was relatively quick and she didn't make it to the hospice but was attended to very well in a side room at the hospital. It is a very hard time emotionally so do look after yourself too.

Just fyi op, with our hospice, they don’t take referrals from patient/famiky. It needs to be from palliative care. Could be different in your area, no harm in asking

So sorry you are going through this.

I noticed you said your mum had been 'fast tracked' and that you already have the anticipatory medications. Has anyone discussed with you what this means in terms of prognosis? I feel you may be correct in terms of her prognosis being shorter than stated.

It sounds like everything is set up to support your mum at home, things sound well organised. The palliative care team will be able to help manage any symptoms. Your mum absolutely should be taking the oramorph as and when she needs it as long as it works for her pain.
The palliative care team should also be able to talk through the diagnosis with your mum so she fully understands what is happening.

No advice but I just wanted to say I’m so sorry OP, that sounds incredibly hard. Thinking of you

I’m so sorry OP, this is such a hard place to be in. I’ve been there too with both parents and completely agree with PP about how much difference the right support makes.
For us, the GP and district nurse were the starting point and coordinated everything really quickly. The district nurse was brilliant at explaining what would happen next and sorting out equipment at home – hospital bed, walking frame, commode, pressure care etc – so mum could stay comfortable. Mum declined quite rapidly and around 6 weeks after diagnosis we had access to some wonderful carers through Age UK, which meant visits several times a day and some overnight respite cover when needed. It genuinely took a lot of pressure off and gave us a bit of breathing space (I was juggling a FT job and two kids under 10). The carers were incredible - mainly women who wanted to give something back to their community- you could tell it was so much more than a job for them - they really cared about Mum and made her feel so comfortable when she was at her most vulnerable. Macmillan were also involved with palliative support when things progressed, all at home, which was something Mum really wanted. It’s an incredibly tough situation and I really feel for you. I hope you’ve got some support around you too, because it’s a lot to carry. Thinking of you and your mum xx

I had this with my dad in 2021. He was 96 though so it was obvious to me there'd not be any treatment offered. It would have killed him. I did think though that somebody should have had the decency to explain that to him though.
the GP was my main point of contact, they did the referral to the local hospice and set up the district nurses to come in and some equipment delivered (and the end of life bag of drugs). It was very quick as it often is with Pancreatic cancer, he was 12 days diagnosis to death. We managed to get him admitted to the hospice for what turned out to be the last 48 hours.
the most helpful thing I got told was
if they're deteriorating daily then they have days left to live, it applies also to weeks and months. So trust yourself on that one. The hospice were great, I could phone them 24/7 and they'd answer questions etc. Likewise the district nurses who I didn't see that often but one popped by to drop something off and I asked her to take a look at him as I felt he was on the final descent but ... she confirmed he was, got on to the hospice and pushed for him to be admitted asap whilst he was still able to be moved. Then told me a few helpful key phrases to be sure I used when the hospice nurse came round to assess him. That woman was an angel!

I am so sorry Op, I have lost a parent with an advanced cancer diagnosis, it is so so difficult, it felt like we as a family were playing catch up from the start with meds, palliative care assistance. I hope you have some support around you, I know you said you are an only child but does your mum have a sister/good friend that can share the load or just be there for you. If/when you think a hospital bed might be needed, don’t be afraid to ask/discuss with district nurses or OT, as these things do take a little time to organise ❤