To want to know my Mum's prognosis?

My dad is the same way. I'd never even hint that I'd like to know as I know it's completely up to him and I would hate for him to seek out that information just so he could tell me, even though he doesn't want to know himself.

His reasoning is that he doesn't know a single person who was given an estimation that was correct. His cancer has had periods of quick growth, and periods of slow growth. It's been very difficult to predict. He doesn't want to linger on information that in all likelihood won't be right.

There are guides online that will tell you X% of people lived X amount of months/years following the diagnosis but really, it's personal to each person.

We've had two parents die after each had a tough year of steady decline and now have a parent with a terminal cancer diagnosis. She told she probably had a year last September, but at the moment it feels like it still could go either way - she could decline quite quickly or could conceivably hang on for a few years.

It does feel very different to the decline of the other two where there was no terminal diagnosis but the direction of travel was steadily downhill. But actually, it's not very different - we are very aware she won't be around for ever, but have no idea exactly how long she has.

So even if you had a prognosis, they can often be wrong. In your position, I might be thinking that every two months is less than ideal, and start trying to fit in some extra time with her - in lots of ways, it's great that you have the opportunity to do that before she gets really poorly. But obviously, you don't want to use up all your time and resources at this stage knowing that you might need to be there more towards the end. So it's a balancing act.

It's a very tough thing to go through and particularly hard if you have a young child as it feels so unfair she is being taken too soon. Unmumsnetty hugs to you.

Please don’t take this as criticism or judgement and I hope you don’t think I am being cruel. Can I suggest you make the most of however long you have with your mum and start making those memories you want now while she is at her fittest. If you only see her every few months, that is 6 times a year. I would try and spend as much time with her as you can realistically. Spend time with her while you can have fun together. Don’t wait until she only has a short time left, when she may be too unwell to make those memories. Just do your best to see her as often as you can and have fun with her.

You’re not being unreasonable to feel this way. I would feel exactly the same because the plans you could make if it’s weeks / months looks entirely different to if it’s months / years. You must feel like you’re going to be living day at a time, wondering if every call is bad news.

But your mum is also not being unreasonable in not wanting to know. Ultimately, you & I don’t know how long we have to live and we cope perfectly fine with that uncertainty. The harsh reality of life and death is that even with your mums diagnosis, it is perfectly possible she could outlive you (I hope not, and I do not wish any bad fortune on you). Maybe she just wants to forget about the illness and enjoy what time she has left and I can empathise with that.

Is it possible that your mum would be open to one conversation with you. A heart to heart on how you’re feeling and why you would like to have some understanding of the expected trajectory of her illness, so you can support her in the way that works for you both? You can understand her wishes etc. Would she allow the consultant to write it on a note pad, and her pass it to you on the promise you tell nobody and treat her no differently?

THIS

When my DSis was dying 10 yrs ago (of a rare and aggressive cancer) - I lived 1.5hrs away by train, DPs lived 2hrs in the other direction. We bumbled along for 3-4 months spending a few days with her when she was having chemo etc. She did want to know, all the way through, until her final admission when she didn't, but she had given permission for us to. When she was admitted for the last time her consultant told us it would be "weeks not months". Other staff were having bizarre conversations with her about getting her bathroom redone to accommodate a walk in shower, pretty much while we were on the phone to the Hospice.

Knowing it would be weeks meant we could put our home lives on hold and move to her city, I stayed with friends, DPs and DB moved into her little flat.

She had begun to liaise with the Hospice straight away after diagnosis, they offered all sorts of lovely things like aromatherapy and massages for anyone living with a life limiting illness. You might want to encourage you r DM to do that if a local Hospice near her offers similar. It was an incredibly lovely and life affirming place to be - my first experience of hospices and I was massively impressed.

We "sold" the hospice place to her as "respite" while the bathroom was redone. Within a few days of going in she was moved from the four bed ward to a private room as her condition deteriorate. She died 2 weeks after the consultant told us "weeks not months". In her final days she had one of us with her all the time, playing music in the background, making sure the morphine pump was doing its job, requesting fentanyl when it wasn't. DM was with her when she died. I had gone home for the weekend to see family.

Knowing meant that we could advocate for her, be there with her, and try to ensure her death was the best it could be.

I understand op. I had a parent who had a type of dementia that caused very quick cognitive decline, but not knowing how long they’d be ill before it took them is difficult to deal with on many levels. I absolutely get your mum’s position as well, anywhere from her accepting it for what it is to just being in denial until it can’t be denied anymore is her right, doesn’t mean you won’t worry or overthink about it, it’s your mum and this must be devastating. It’s still very raw at the moment, as the weeks go by it will be less at the forefront of your mind, in the meantime would you be entitled to cancer related counselling?

My parents were told and decided that they had heard something completely different.

They did let me speak to his oncologist which confirmed to me that they were being very unrealistic but this didn't help at all in terms of 'making memories ' as why did I want to visit so much when he was cured?

Ultimately I had to respect their decisions and let them do their thing- which was hard as most of their decisions made the situation far worse than it needed to be.

OP try looking at it from a different point of view. Even if your mum had no illness at all - we none of us know how long we have left. You could be hit by a bus tomorrow and there was no time frame on that! You don't live your life expecting to be hit by a bus or you would never step outside your own front door. Added to which if you were told you have six months left - how would you feel if you were still here seven months later?
Having been through cancer treatment and been told conflicting opinions of cured or in remission, I go through life much like everyone else - I plan nights out, I look after GCs, go shopping, all the things you would do normally and I suspect this is what your mum wants to do. You live some distance from your mum which is obviously impacting how you think. So if it helps you - plan to see her more often or phone her for a chat. If you knew she only had X amount of months left it will affect your thoughts and how you treat your mum because you will feel that you are running out of time. You have 'one life live it' in the present here and now!

I'm in a similar position with my mum, however her oncologist told her a prognosis without asking if she wanted to hear it or not!

if you really need to have a rough idea, chatGPT could give you that. I really struggled with not knowing how much time mum might have left, and found myself asking one night and it was very similar to what experts had suggested.

My Dad was the same and didn't want to know anything. He knew he had cancer and then he knew he had terminal cancer. I wasn't at all surprised with his way of dealing with it and we just went along with it. He didn't want to do special things and preferred us to carry on as normal. He was ok talking about it though and was happy (?) to talk about death and what he wanted etc. He did not want people fussing around him and would have hated the thought of people wanting to 'make memories'.
I now have a friend with the same type of cancer and I know every detail of her diagnosis and prognosis. Her approach is the opposite of my Dads. Neither approach is right or wrong. You have to respect the opinions of the person with the cancer. You would be wrong not to.

I totally understand and accept this point but also feel for the OP. She isn't next door.

If her mum was due to live for a month she might get signed of work and spend all the time she can with her. If it's going to be three years that's not a practical or sustainable choice.

So with so little information, "make the most of this time" is impossible advice to follow.

The fact is she's going to have to mostly get on with her own life until things suddenly turn and become obvious - at which point she might then live with the regret of not having done enough. It's an impossible situation.

My DH has lost three family members suddenly. It's very scarring. Some warned is helpful (although I do think it's better to have a relatively short warning than years of illness)

If the patient doesn't want to know themselves but is happy for a relative to know the medical teams can and do give information to relatives (very strictly with explicit permission from the patient). But what you've said here is the catch, it might be really hard for you to not convey that information unintentionally, especially if it was a poor prognosis.

This is tough on relatives but the medical staff have to abide by client confidentiality.

If it makes you feel any better I have had two relatives who did have a prognosis but then events overtook things and the actual outcome was nothing like the prognosis. So even if you did know, you’d never really know, if you see what I mean? You just need to take things a day/week at a a time.

I’m so sorry, this would drive me completely crazy.

The not knowing is so difficult. My DH's cancer came back in his bones and it was determined he was palliative care only, but the doctors refused to even use the word 'terminal' or discuss a prognosis. They tried different medications to stop it spreading further and right up to the day he died they were trying to treat his symptoms, even though it was obvious he was in very poor condition. I spent so much time with Dr Google, reading other people's experiences and attempting to guess what stage he was at, and how long he may potentially have. I hope you have a better journey with your DM.

If your Mum has been allocated a specialist nurse it might be worth asking if she would give them permission to talk to you - then you could ring them
DF was diagnosed with bowel cancer 8 years before he died from a stroke - he went into denial and wouldn’t even call it cancer - just used to call it his ‘problem’ he did allow me to discuss his care though and it worked really well as I could just ring for test results or if I felt he’d deteriorated or had new symptoms
They reassured me it was quite slow growing and due to his age and other health conditions they would not be offering surgery or chemo or radiotherapy

I don't think either of you are unreasonable, just you need different things to cope.

When my DF had cancer I was able to anticipate very accurately as my job is Palliative Medicine and I found it helped to know timescales.

The Cancer Research UK website has prognosis stats if you know her primary and stage.

Even just knowing the primary and secondary sites can give you an idea as there is a world of difference between recurrent lung cancer and postmenopausal breast cancer with bone mets.

Yanbu at all. Of course as you've said you know you can't force or persuade her to find out but you are completely entitled to feel like that. I'd feel very similar in those circumstances. I'm so sorry op.

I agree that neither of you are being unreasonable.

A clinical colleague passed on a rule of thumb that if people are deteriorating over months, they probably have months left, if they are deteriorating over weeks they might have weeks left, if they are deteriorating over days they probably have days left. If your mum is looking pretty chipper and not much changed from a year ago, maybe she still has years?

I'd have a look to see if you have a Maggies centre locally, they may have advice or a carers group.

Big hugs.
You have to respect your Mum's feelings and wishes here. Although I have huge sympathy for your distress too.
When my Mum was in late stage cancer the advice I was given was it's hard to predict a timeline, but the rate of change is a good indicator.
Keep in touch with your Mum and follow her lead.