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Original poster

I'm trying to find out what life expectancy for an aggressive brain tumour is and struggling.

38 replies

VivaLeThrustBadger · 20/09/2013 16:14

It's a secondary CNS lymphoma which I think is probably quite advanced already. My dad isn't recognising people, doesn't know who he is most of the time.

He'd already had a primary lymphoma for which he'd had aggressive chemo but its spread.

Drs have said that prognosis is very poor but that they can try chemo direct into the CNS. I'm guessing this is to buy time rather than cure?

I don't want to ask the Drs as my step mum doesn't want to know I don't think. But I don't know if we're talking a couple of weeks or a few months?

OP posts:
TweenageAngst · 20/09/2013 16:51

Even in patients with decent immune systems the prognosis is pretty poor. Intrathecal methotrexate seems to offer slightly better outcomes (from a quick medscape search).
I am no expert but I have cared for quite a few CNS lymphoma patients in ICU they don't do well.
I am so sorry Viva it is a really shitty diagnosis

sittinginthesun · 20/09/2013 16:56

Sorry you're going through this.Hmm

When my Dad was diagnosed with terminal cancer a few years ago, I found the Cancer Backup (think its now part of the Macmillan charity), phone line a lifeline. I could speak to a trained nurse with experience who was prepared to answer everything.

My dad refused to ask for a prognosis, but I needed to know. I called a few times, and they were able to help me get my head around if.

sittinginthesun · 20/09/2013 17:00

www.macmillan.org.uk/Aboutus/ContactUs/ContactUs.aspx

Brideandgloom · 20/09/2013 17:02

I'm sorry to hear about your dad.
I would second calling Macmillan, they are a fantastic resource, you call and then they can get a nurse to ring you back to talk things through. They have been invaluable to me over the last few weeks as my FIL has been diagnosed with advanced bladder cancer and i had pretty much the same question as you re timescales.

I think the reason it's so hard to get a timescale is because it can vary so much depending on what treatment, where the tumour /s are/is and how well the patient is already.

Wishing you and your family all the best. xx

Original poster
VivaLeThrustBadger · 20/09/2013 17:21

Thanks, I just rang that Macmillan number.

They weren't sure about times for a prognosis but were still helpful.

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Rooners · 20/09/2013 17:23

Oh God Viva I was so hoping it wasn't this. I'm so sorry pet.

I don't know anything about this cancer but I'm just sorry. Thinking of you xxxxx

Rooners · 20/09/2013 17:33

this is very in depth about different treatments and why they might or might not be given and to whom, and for what reasons iyswim...

I wish him and you lots of love and strength.

Original poster
VivaLeThrustBadger · 20/09/2013 17:44

Thanks Rooners. He's actually just had stem cells harvested only a few weeks ago and was on standby for a bed for the transplant. I'm kind of assuming that due to these developments that this wouldn't now go ahead but I think we need to ask if it can/if there would be a benefit.

I'm also thinking that as he's nearly 70 maybe they won't want to treat it too aggressively. That they won't want to spend too much money on him?

OP posts:
Rooners · 20/09/2013 18:10

It's possible that his age would be a factor but I don't know. If they were considering it before then I think that stands in your favour.

Keep posting, if it helps. I have been wondering how you got on x

Original poster
VivaLeThrustBadger · 20/09/2013 18:39

Thanks.

Step mum is coming over for dinner. I've rung my brother up and told him he needs to get here this weekend.

I've got to tell my mum yet which I can't cope with at the minute. Have a horrible feeling it will all be a big drama and she'll want to come to the hospital, etc. which will upset my step mum. So ill have to tell her she can't.

OP posts:
Rooners · 20/09/2013 20:12

Sorry I had to take ds to his club...that sounds really awkward. You don't need family dramas at a time like this on top of what's already happening.

I hope your bro is helpful.

expatinscotland · 20/09/2013 20:19

It's not a question of money so much as that at that age, and having undergone so much prior treatment/being a relapser or secondary afflicted, the treatment is often fatal. Did your dad make or leave any plans how he wanted his treatment handled? From what I know, intrathecal is just to buy time and comes with very serious side effects.

Original poster
VivaLeThrustBadger · 20/09/2013 21:34

Good points Expat. We need to ask about side effects of the intrathecal as I don't know what they are.

My brother seemed a bit annoyed that I can't answer his questions.....his main question was the same as my initial one - how much time? He wants to know regardless of whether my step mum wants to know or not. I've pointed out the medical staff may not know. I do see his point, depending whether its days, weeks or months will make a difference to him/us taking time off work. It's easier for me as I can come in evenings and often in the day as well whenever, but he's two hours away.

I've told my mum and that went as well as expected.

She wanted to know what "role" she could have when he died. I said that none really as they're divorced and dad has a wife. Mum says "we were married for 41 years and people will expect me to attend the funeral".

I know my step mum won't want her there and to be honest I wouldn't either. She'd want to be in the front pew in black, sobbing away. I don't need it. Can I tell her she can't come? Is that awful of me?

OP posts:
Original poster
VivaLeThrustBadger · 20/09/2013 21:35

I don't know of any plans my dad made apart from saying he'd prefer to die in the hospice.

My step mum has said the Drs have said its gone past the point of a stem cell transplant.

OP posts:
expatinscotland · 20/09/2013 21:49

If there is mets to the brain, yes, it is past the point of stem cell transplant. Stem cell transplants for those who have had blood cancer is to maintain remission. A person with mets to the CNS is not a candidate.

He needs to ask his doctors if he is able. If he has tried to make plans to be treated in hospice it may be that he has been given a terminal diagnosis already and not informed anyone of it.

If he is unable to speak to his doctors you might be able to.

No one will be able to definitively tell you how long such a patient has because those with such suppressed immune systems can die swiftly from even a cold.

Original poster
VivaLeThrustBadger · 20/09/2013 21:52

He's not able to ask his Drs anything.

He doesn't know where he is, who he is, who we are. Sad

Thanks Expat.

OP posts:
expatinscotland · 20/09/2013 21:56
Sad

Please try to speak to his doctors. A patient must have a terminal diagnosis to enter hospice and usually a DNR. They can offer c-pap but don't do vents often because they are life-prolonging.

If his mets is that advanced he might likely be well past the point where intrathecal can do anything.

BiBiBroccoli · 20/09/2013 21:57

When my dad was in the hospice I spoke to the consultant on my own as I wanted to know how long he had left and my mum didn't want to know.

I asked my mum if she minded me talking to the consultant and she was fine about it (as was my dad) An hour after I spoke to the Dr my mum asked me how long he had left so I then had the truly awful task of telling her he had days left.

Perhaps you could discuss it with your stepmum and see if she'd be happy for you and your brother to talk to the doctors?

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

Original poster
VivaLeThrustBadger · 20/09/2013 22:00

I doubt there'll be any answers tomorrow as it's the weekend but ill try on Monday to see if I can talk to a Dr.

OP posts:
BiBiBroccoli · 20/09/2013 22:02

If he is in the hospice there will be a doctor available over the weekend. There certainly was when my dad was ill.

expatinscotland · 20/09/2013 22:02

Please do. Hope you get some answers.

PomCareBear · 20/09/2013 22:11

I'm very sorry this is happening to you and your dad.

As others have said the doctors can't really tell you time scales as it varies so so much.

My dad had a very similar situation, secondary brain lymphoma. They said he had weeks if he had no treatment and months if he had chemo.

secretscwirrels · 21/09/2013 15:17

VivaLeThrustBadger I'm sorry to hear this. Based on my experience you may have less time than you think.
My dad died of this 3 years ago.
They thought the primary cancer was in his lung but he had no symptoms until it metastasised into his brain. His first symptoms were loss of balance and coordination.
He was diagnosed a couple of weeks later. No treatment was offered, just palliative care. The consultant told me that the prognosis was "on average a couple of months."
He died 5 weeks later.
Bear in mind that at the time we were told this he was still relatively well and completely lucid. He went downhill dramatically day by day. He spent his last 10 days in the hospice.

JuliaScurr · 21/09/2013 15:37

So sorry - it's a tough time. Could a support worker ort out these difficult family issues for you? A close friend of mine died recently of lung cancer. He had a short time from diagnosis to the end of his life which he spent in a hospice and at home cared for by Macmillan. It was as good as anyone could possibly have wished for and made it easier for all concerned. I hope you will all have the same level of support and care.

Original poster
VivaLeThrustBadger · 21/09/2013 16:43

Thanks for the messages, much appreciated.

I've been to see dad today and he seemed a little better. Seemed like he knew us though sometimes I think he pretends to know people/ know what we're talking about. Lots of nodding and saying yes when at times I don't think he understood.

He was also telling us what a nice private school he was in, though the food is terrible, like hospital food. He asked me how I was going to get him to hospital when he needed to go as it was a long way down south. So still really confused.

OP posts: