It is sad to hear . my Mom has TNBC and had mastectomy. Finished her 12 weeks of Palcitaxel and now  on RT

We were able to get second opinion from hospitals & private specialist in UK which we found useful in that we could proceed with some treatment that is possible on 79 year old 

so you can apply for second opinions which may provide info and advise ..

Hope you get good help overall... 

Hi  my husband was diagnosed in October 2019 inoperable aggressive rare brain cancer he is 58 yrs !! glioblaststoma stage 4 !! His treatment was radiation and chemo tablets sadly treatment didn't work he is now confined to bed with Carers 4 times a day , started with a sore knee dragging his foot was still working and driving , till he took himself to E ,A, they kept  him in thinking it was a stroke until they done MRI scan saw tumour on his right side which was affecting his left side , so now we are at this stage we don't know what to expect as we don't know systems we read up on the web to find out what other people are experience , also can't talk very good now eating is a bit of a struggle to only consolation NO PAIN !! 

Thanks so much for your advice and good idea. I was reading about different treatments available such as immunotherapy but I believe that has now been discontinued in the UK and patients have to go abroad. 

I really hope your mum will be ok and sending warm thoughts to you and your family going through this.

Hi

Sorry to hear about your mum, but I am pleased she has managed to get some treatment.

My husband was 53 years old at the beginning of March this year when I noticed his speech was quite slow and he was sometimes struggling with finding the right words.  We were on holiday at the time and other than his speech, everything seemed fine and normal.

When we returned from holiday, we went to the GP who sent him for a scan and on 11 March they found the tumour.  After ridiculous delays by 2 hospitals, he eventually received a biopsy 17 days later when they confirmed it was a GBM stage 4.

The nurse at the hospital confirmed this to me (my husband was unwell by then as the biopsy had caused fluid build up on his brain which caused paralysis down one side).  The nurse said that they would be able to look at palliative radiotherapy or debulk the tumour to help him live a little longer.

The following day, when the Consultant returned to the hospital, there were no options available to my husband and they basically let him come home and he died on 21 April - 5 weeks after finding out that he had a tumour!

So, yes, it is difficult to accept that there is anything wrong as these tumours seem to be silent until a late stage.  Having said that, my husband was going to the GP on and off because of extreme tiredness, pains in his knees etc and nothing was ever picked up.

I would say that your mum is very lucky that she is receiving treatment and appears to have responded well so far if she is able to continue talking as normal etc and I would recommend that you take advantage of the 1 year prognosis and make the best of it that you can.  I really wish my husband had been given the chance of anything more than his 5 weeks.  

I hope all goes well with your mum xx

Hi Aneto,

My dad was diagnosed with grade 4 brain tumour, high grade glioma (also known as glioblastoma) in April 2020, also during lockdown. He was sent home and referred to palliative care. So no treatment offered. 

At this stage, he was having difficulty with his short term memory and would repeat things that had happened to him in conversation and at times would appear vacant, allowing others to converse around him. I completely understand what you mean because many of dad's relatives would speak to him on the phone and report back how chatty he was etc. However, those closest to him (my mum, myself and sister) could see that at times he didn't know who he was talking to but could just engage in a generic conversation. It was as though his long term memory of social rules was in tact and he knew the social cues of what to say when. When asked who and what he had spoken to and about later on, his recollection was limited on a good day and zero on a bad. There were of course other symptoms but he carried on "ok"-ish for a a few weeks and then, I'm sorry to say, the rapid was sharp, dramatic and just breath takingly fast. 
 

We do think that we remember things with hindsight but I would say that was only as far back as December 2019 when, we were told, that the prognosis and outcome would have been the same. And they weren't marked enough symptoms that you would think that you need to visit the doctor for. My dad just said in passing "my memory's getting terrible" and then laughed about his age, 69. So yes, as MrsMayhem says, they are silent until they aren't and by then it's usually too late for even treatment. It is good that they have been able to offer something for your mum and I sincerely hope that this gives you a length of time where she is relatively well. Love her and say all that you want to and need to her.

With regards to my dad's timeline, 5 weeks after diagnosis, dad was eating, drinking, toileting and mobile but his behaviour was getting more and more dementia like. Never aggressive, thankfully, but so confused and disoriented. Would need to be shown where the bathroom was and where to urinate as he would look to the sink/shower/bin. At this point he had a grand mal seizure and this was his sharp decline and he died another 5 weeks later. The final week was when he became bed bound so mobile (with support and supervision) up until that point. So 10 weeks from diagnosis to his end of life on 21st June 2020 with his family by his side. 
 

It's an incredibly painful time for all involved and I wish you lots of loving support with your mum. I'm more than happpy to answer any questions you might have about my own experience. Lots of love xx