To want to know my Mum's prognosis?

I am being treated for cancer. There is 'no convincing evidence of disease' at present, which is good of course, but I am at high risk of recurrence. I have asked for a prognosis, but my oncologist has not been able to give me one because my cancer does not fit the model they use for this.

So, even if your mother wanted a prognosis it doesn't mean she would get one or, if she did get one, that it would be anywhere near accurate.

I quite understand why you want to know, but I think your mum probably just wants to be treated 'normally' at the moment rather than as if every day could be her last. I know it's difficult, but try to do that if you can.

Yes, I agree with a previous poster: Dr Google will give you a rough idea.

Ps we are just acting as though they have months rather than years. That means appreciating the time seeing them and trying to see them more. It's all you can do really.

In a similar position with a family member. We are really struggling with it. Just radio silence, They have cancer that is stage 4. That's all they have said and we won't ask them. We can't do anything about it and nor will we ever say anything to them but Christ it's fucking hard.

Sorry to hear about your Mum's cancer.

Ultimately it's your mum's decision. She may change her mind, she may not.

I can understand how this adds to your own upset.

Children can rarely remember much, long term, before the age of5 and so it may be that you start to create something like a memory box. This might be with your Mum or a solo creation.

Measuring life expectancy isn't a science. My MIL was given 'a couple of months' which she being deaf didn't hear clearly. She had 6 weeks and so not a bad guess. 4 and a bit of those she was OK ish and able to see people, say her goodbyes etc.

You could do some research and knowing sizes, grades, stages, places etc will help give you some sort of answer.

It's perfectly understandable that you'd want to know, but it would be unreasonable if you tried to force your mother to find out. You will just have to go along with her wishes and be supportive of her.

@UnBledPerdu if you want some generic advice about your mum's prognosis please PM me. I don't want to just go for it in the thread.

Could you reframe it in your own mind, by reminding yourself that everyone is going to die and it is very rare to know when it will happen? Like it's not an uncertainty you are having to cope with because of her choices/preferences, it is just how life and death is?

This is the best advice. It's usually apparent when someone is moving into the final stages, and losing them can happen quickly once their illness is physically evident (considerable weight loss, fatigue and becoming more illness prone).
My Mum was given a prognosis of 6 months, she was however still with us 2 years later. At that point though she deteriorated very quickly (in the 6 weeks or so) prior to her death.

If you know her cancer type and where it has come back to, and what treatment she is offered etc you can probably Google and find the answer in a few minutes. When my mum had cancer she didn’t really ask the drs about timescales but I knew as I looked it up. It was all pretty accurate tbh. Some stats are out of date for general prognosis because for things like 5 years survival rate they can be 5 years behind. But once someone’s cancer has come back it’s usually quite right. You don’t need to tell her you’ve looked it up and can just make plans accordingly in terms of seeing her. Even if she wasn’t ill, you can always choose to go more regularly.

I should also say if you are providing direct care the Dr may give you an idea nearer the end. I discovered afterwards my dad knew my mum was in the last month of her life but didn't tell anyone. But he was caring for her at home and had POA as she wasn't really capable of making decisions by that point

If you can go and stay with her and she would be happy for you to then I would suggest just going to do this anyway. If it does turn out to be a short time she has left then you’ll be glad you went and even if she has years left, you’ll probably still be glad you spent that time with her.

I'm so sorry you're in this situation OP
This is quite a common scenario and I had something similar with my mum.

It can depend whether the cancer is in a vital organ. When her cancer returned I assumed she was within the last year of her life and treated everything accordingly. She survived about 18months

YANBU at all. It's actually really hard for the people who have to cope with the death and aftermath to not have any idea. When my FIL had cancer he and MIL refused to ask any questions about disease progression or prognosis. Consequently, neither of them realised that his cancer had spread and that this meant that it was terminal, until he died. So he did nothing to get his affairs in order and she was absolutely blindsided when he died, despite his appearance suggesting that the end was near for a good couple of months beforehand.

I think I'd try and find out, if it were me. Of course, all timescales are very approximate and subject to sudden change, but I too would want some kind of ballpark figure, if possible. I'm sure there will be opportunities for you to ask someone - a doctor, a nurse - and if so I would take that opportunity

If you get to the point of having Palliative Care visit at home, the common solution is the relative ushers the nurse to the door at the end of the visit and has a quiet discussion on the doorstep.

Sometimes the nurse will even hint at you to come to the door although not everyone gets the hint.

Just because you don't want to be told all the details of your prognosis doesn't mean you are 'in denial'. My Dad knew he had terminal cancer but he actively chose not to know the details. He 100% knew he was dying but found it more palatable not to know the details.

Oh OP, this is hard and I completely understand. I'm very much a 'need all the facts' person. When my lovely Mum's terminal cancer diagnosis was delivered to us, without even thinking about it, one of the first questions I asked the consultant was "how long". I felt dreadful afterwards, as I'm not sure my Mum would have asked that question.

Have you researched the particular type of cancer that Mum has, or could you have a chat with MacMillan to see if they can give you some more information?

I'm so sorry you are having to go through this.

This is such a difficult situation @UnBledPerdu I'm so sorry you and your mum are dealing with this.

I completely understand you wanting to know how much time you have left with your mum and I can also really relate to your mum not wanting to know what her prognosis is.

There is no right or wrong - how you feel is how you feel, don't question whether you are being unreasonable, you are just trying to deal with your feelings, please don't feel guilty about it.

Is there a Maggies centre near you? They support family members and could be a great place for you to visit - you can just drop in for a cup of tea and a chat. They might be a good place for you to help process some of your own worries and concerns about your mum's situation.

Does she have any kind of immediate treatment plan in place? It sounds like this is all recent news, it may be that in time you will get more of an idea? Or as the news and initial shock sinks in, you may find that you come to have more acceptance that you don't know and just take things month by month.

Like others have said, incurable doesn't necessarily mean months - it could still mean years.

Wishing you and your mum all the best and sending you a hug.

Sending you sympathy, I've been in this position and it helped me to plan and support my loved ones.💐
When my parents were terminally ill (separately, different conditions), I had a quiet word with the respective lead nurse and they told me what the expected timescale was.

The nurse caring for my dad was spot-on, he died in the month she had predicted and I had been told in December my mum wouldn't see another Christmas. She died in the September.

This was a number of years ago, things may have changed but I think HCPs who deal with palliative care will be used to this.