Cancer of unknown origin?

[Badvoc]

Hi
I wonder if anyone has any experience of this?
My aunt was told this week that she has terminal cancer but they dont know where.
She is starting palliative care and the Macmillan nurses are coming next week.
She has lost a lot of weight and has a sore spot on the base of her spine which the DN are now dressing.
They think it's lung cancer, but it could be breast as she had that a few years ago.
She seems very frail. Not eating much.
But she isn't in any pain (which is great)
If they don't even know where it is, how can they guess how long she has?
:(

[ZombieMonkeyButler]

Hi. Firstly, I'm very sorry to hear about your aunt.

I'm sure someone medically trained will come along and explain things better but, from my understanding, this means that they have found cancer - but that the cancer they have found is a secondary. Therefore there must be a primary somewhere.

In someone as frail as you describe your aunt to be, and where there are already significant secondaries, they might consider that it is not worth the invasive nature of tests to discover the original source. It may be that it would not effect the treatment offered, or alter her prognosis.

Both my mum & dad died from cancer - different ones, but at the end of life, care remains pretty much the same.

[ZombieMonkeyButler]

Sorry, I've just noticed that you asked about time.

They will probably be able to judge that from her current state of health.

[NorthernLurker]

Saying how long somebody has is in any case an inexact science. Some people will have much longer than 'expected', others much less. Tbh I think in the case of your aunt there must be clinical evidence to demonstrate that her prognosis is poor and that good palliative care is the priority. Cancer which is advanced often follows a similar path in any case, whatever the source. My bil's tumour spread from lungs to brain. Tbh it didn't make much odds. Wherever the tumour is, her needs for nutritional support, symptom palliation and, if needed, pain relief are the same. I'm very sorry you've had this news and it must be awful for you all. Just try and help her make plans because you can do that even without a timescale. Does she want to stay at home or would she prefer a hospice? Are the any unresolved issues she wants to sort out - family relationships or things like a will. What does she enjoy doing and how can you fit as much of that in as possible?

[Badvoc]

Thank you both.
Things are very difficult ATM as we lost my beloved dad (her brother) 3 months ago very unexpectedly and she has really gone downhill since then.
Her son (estranged) lives away but they are back in touch and her daughter works so my sister and I are trying to help as much as we can.
I have been baking (she on,y fancies sweet things ATM) and taking her shopping, for tests etc.
The consultant she saw has cancelled all the tests she was due to have thank goodness (she had 7 appts in 10 days which I feel is ridiculous for such a frail woman)
I have organised a fold up wheelchair for her as she wants to go and see my dads headstone :(
It's all happening quite fast wrt the DN and Macmillan - macmillanw ere suggested a few weeks ago and she refused but I think that was because she didn't have a dx.
It just all seems so relentless ATM.
I am lucky in that this is he first person close to me who has had cancer and I just wondered what to expect, but I guess it's how long is a price of string?

[Badvoc]

She hopes to go and see her son at the end of this month...just hope she can.
I will do whatever she wants, take her wherever she wants to go.
I try and pop in most days (she lives near mum) and do boys of cleaning etc
It's just so hard.
:(

[VivaLeBeaver]

Sorry you're going through this.

I'm in a similar position with my dad. He was given six weeks to live seven weeks ago. So they will have an educated guess.

The hospital have arranged for a hospital bed and other stuff to be at his home. It's all set up for when he needs it.

At the minute he's ok getting up out of bed, getting dressed and eating.

Does your aunt live alone? Have you all discussed what's going to happen when she needs care 24/7?

[Badvoc]

Hi viva. I'm very sorry to hear about your dad. What a dreadful thing cancer is :(
Yes she does - in a bungalow.
She has a special mattress and seat cushion (.she is very thin)
I guess that after the Macmillan nurses come in that is the sort of stuff they will discuss?
I have told her....whatever she needs we will sort it.
If she wants to stay at home we will figure it out somehow...even if we all have to take turns staying the night.
You never think you will have to have these discussions, do you?
:(

[trish5000]

Hi Badvoc. As NL says, it is an inexact science. I am going through much the same thing with a relative of mine.
He is actually slightly better currently because he too is seeing someone he hasnt seen for a while which has raised his spirits. He has more than one tumour, and cancer. Perhaps your aunt has too. So, even just by that, it is all going to be inexact.

[Badvoc]

Oh gosh, yes, she has lots of other issues too...thyroid, diabetes, liver disease....she had a heart attack a few years ago and breast cancer...so her health has been going down hill for some time in reality.
It's just since my dad died she has just...faded away :(

[VivaLeBeaver]

Yes, the Macmillan nurses have talked it through with us.

He could go to the hospice if he wants, but only right at the very end. So last couple of days.

Or stay at home and they will organise nurses which I think is probably what we'll do.

I assume there will come a time though before those last few days where he will need someone there all of the time. Not sure if the nurses would cover that, I suppose it depends if they think it would be days like that or weeks.

[Badvoc]

So sorry viva.
What a Terrible time for you.

[NorthernLurker]

Yes it is relentless I'm afraid. I found an e-mail a while back which I'd sent to dh around the time my bil was diagnosed. I'd evidently been ringing the hospital on my sister's behalf trying to move appointment etc along a bit. I don't remember making the call and reading the mail was weird - was like reading another person's writing. I remember how incredibly hard it was to tell anybody what was happening without crying and I remember that Christmas shopping was the hardest thing. Just terrible. It was a nightmare time but we got through it and my sister was amazing. He died at home where he wanted to be.

This must be especially hard for you coming on top of losing your dad. You might want to enquire about some counselling. Not because you can't cope but becayse you are coping with a hell of a lot. I never knew what anxiety felt like - the relentless, all consuming sort, till this happened to us. You can never get too much help.

[trish5000]

I am always surprised how much our spirit, if that is the right word, makes a difference in these things.

[Badvoc]

My sister is having some counselling NL.
She was abroad when dad died, and is finding it very hard.
My brother is doing better than he was. He was practically catatonic with shock for a few days after dad died.
Sadly my mum had a heart attack later on the night dad died so it's been pretty difficult. We were planning dads funeral and visiting mum in hospital at the same time.
Rather surreal now I look back on it.
I'm not sure whether it would help me or not...I think I would just be wasting their time tbh.
I am dreading Xmas. But I have 2 young dc so need to make sure they have a good time.
Dad would be livid with me...he loved Xmas. Was like a big kid.
Oh, and my uncle died last week and it's his funeral on Friday...I am starting to dread the phone ringing...
I'm glad your bil got to stay at home. I am sure your sister was so grateful for all you did.
My aunt gave me a back door key earlier today. I guess it makes her feel better.

[NorthernLurker]

You take care of you, ok. Lot of pressure on you and you're doing great but you aren't invincible. I'll keep an eye out for your threads. I found it very helpful to post here and receive support.

[Badvoc]

I am on the parents bereavement board which has been a lifeline tbh.

[VivaLeBeaver]

Badvoc, what an awful time you're having. Look after yourself.

[Badvoc]

Thank you x