To want the hospital to continue monitoring metastasised cancer even though no treatment planned ?

[limetrees32]

I really don't know what is usual.or what to think.
Situation
75 year old friend ,no family ,has Alzheimer's.
Specialist nurse said they would retain friend and monitor by scan.
Consultant said they would discharge with referral to hospice for early contact.
Said scanning not an option where no treatment
Friend has no pain or symptoms.
It's de differentiated liposarcoma .
As friends supporting we have no idea of time scales or what the future will look like.
Friend is in denial - probably a good thing for her but difficult for us.

I think referral to hospice is the kindest thing in this situation. Your friend is dying and that is really sad, but the scans wouldn't achieve anything. Be responsive to your friends needs. She isn't in pain atm and hospices are wonderful, compassionate places. It isn't just about imminent end of life care - the early care is brilliant too.

I'm sorry the consultant seems to have been so cold. If it was a surgeon your friend could ask for referral to an oncologist, even if they say no treatment options they might have better bedside manner.

What would you get from further scanning? It'd tell you how much the tumour is growing but that's not necessarily information about a timescale.

The referral to hospice seems like a better route to info - they have doctors who could give, possibly more useful, info about timescales and what that might look like.

I'm so sorry @limetrees32 . That's really difficult.

What sort of monitoring would you like to see? Why do you feel scans would achieve?

The uncertainty is difficult - but you can never know timescales exactly. Having said that the oncologist will have a reasonable idea and her symptoms will guide hospice staff. Would be good if some of that was shared with you

Very gently, I think you are being unreasonable. A referral to a hospice and managing symptoms as they occur seems like a sensible course of action. But I may think that because, ime, scans don't necessarily tell you much about timescales.

It could have been explained better but entirely appropriate. Your friend's general condition will give you more information on timescales than any scan. If they were to develop pain or a new symptom, it might be appropriate to scan to see if there is a lesion amenable to simple palliative radiotherapy. The hospice team can discuss with the hospital as needed.

Please don't ask to see an oncologist. They are not a back up for the poor communication skills of the surgical team (and have waiting lists of people in need of chemo or radiotherapy). Go back to the surgeon or CNS if needed. Who has LPA for your friend?

I’m sorry your friend and you are going through this.
We are in a similar situation with my Mum who has recently been diagnosed with stage 4 pancreatic cancer that has metastasised to the liver. She has not even seen an oncology consultant as when in hospital was on an endocrinology ward. She has seen an oncology nurse who we asked for a timescale and she gave us one. Now we are at home we are under the care of district nurses.

My Mum is also upset and confused that she’s not seen a consultant and wants more scans and tests to give her answers but I think they are pointless. I think she’s also holding onto a bit of hope the diagnosis is wrong as a Doctor hasn’t told her but there is no doubt.

I hope your friend is comfortable and she’s lucky having your support.

I'm sorry to hear your bad news and think it's natural to feel that there's more that could be done.

Scans now would be of limited use in terms of timescales, and may actually cause your friend more distress - particularly if she has Alzheimer's and doesn't understand what's going on.

You may find that they do rescan her at some point if she does develop symptoms that require management. 'No treatment' is something of a misnomer; my late husband had treatment for various symptoms caused by his stage 4 cancer, to keep him comfortable whilst knowing it wasn't going to cure him or even potentially extend his life.

If she is symptom free right now, the best thing to do is carry on as normal and help ensure that her quality of life is as good as it can be.

Also just to add, just because she isn't being monitored in hospital shouldn't mean she isn't being monitored at all...it's just that there are agencies that are better placed to do it at this stage.

Thank you @ClashCityRocker ,, both for your kind words and also for the perspective .