Tumour Growth

It's so hard isn't it, the not knowing? You don't know whether you're in a spring race or a marathon. 

My wife had her latest scan last week and we see the oncologist on the 18th. I'm dreading we get a result like your mum's though I know it's very possible. I do know that the steroids are helping to mask a lot of the problems but right now I don't care. 

Was her oncologist willing to discuss timelines at al? From what I've read I think they struggle a lot with predicting how much more time someone might have. I presume she's not receiving any treatment at the moment?

I'm so sorry you're left just hanging on waiting to see what happens next. Have you got the support you think she needs in place if she does start to go downhill?

Wish I could be more help.

Chris

Abit of background

Diagnosed August 2022. 3 weeks of radio and TMZ. After this she was so ill they stopped all treatment.

Jan 2023 she was so poorly but this ended up being side effects of treatment and she rallied through. They then decided to do a cycle of MRI/review and considered another round of radio.

First MRI showed no growth, all seemed well.

This MRI was 6th July and the tumour has doubled in size and we are a month on since then. 

Oncologist refused to discuss timescales because I think they simply don't know, but I'm given the impression we are talking weeks maybe and not months. I feel like we are free falling into an abyss. 

It's knocked us because although she has been unwell, we haven't seen a decline, just a stable level of not good. They explained its a gradual process and she's just going to sleep more (she sleeps all the time anyway) I'm filled with anxiety already that today could be the day, I just wish I had a rough idea. 

People's response today has also been tough. Mostly "well you knew it was incurable" but I feel like incurable and actively dying is so different!

My husband finished his TMZ at the end of Jan and his scan showed that the tumour had shrunk a bit. He had a repeat scan early April as he just didn't feel right. The tumour had spread into his brain stem. Unfortunately his deterioration was quick, he became more unsteady on his feet and we had to call in the pallative care team from the hospice. By 1st May he was unable to mobilse at all and he died peacefully three weeks later at home. He remained pain free.

HI

so sorry to hear that things are on the move. These tumours really are the gift that keeps giving.

I've come to take any prognosis with a pinch of salt but can only speak from our experience.

My husband was first diagnosed in Sept 2020 and things remained pretty stable until the scan he had at the end of Sep 2022. it showed two new small areas of tumour growth according to the oncologist on the video call. They did a scan 6 weeks later to judge growth and by the end of Nov those two areas had doubled in size and found 2 friends. His last scan was mid- Feb and we spoke to the oncologist on 27 Feb who said those 4 areas had all joined forces to form one . He never gave dimensions etc. At that time he said we had "a few weeks, 2/3 months at most". G is still with us although  he is now failing and we're not too sure how long we have.

This key thing to remember here is that everyone is unique and these tumours impact in different ways for everyone.

The unknown is scary. For what its worth we were told to get his affairs in order in Sept 2020. Take each day at it comes. Judge how things are by how your mum is in herself.  G has remained well in himself throughout. Only 2 weeks ago he rode on the back of a tandem bike for 100km with his pal. He's had very few physical symptoms until this past week. His issues have all been cognitive up till now.

There's a lot of useful info on the main website that might help a bit. Here's the link Supporting someone | Macmillan Cancer Support

Please reach out here anytime. Remember you're not alone here. We're all on this journey with you.

Stay strong. Sending love and light and hugs

Wee Me xx

So tricky. I know everyone's experience is different, I guess that's why its almost impossible to find an answer online. 

Guess we have to roll with it for now, I'm just so scared I'm going to miss the signs. The CNS has led me to believe its a gradual process and she will just fall asleep as her body stops working. Which is comforting in a way but also almost impossible to prepare for (if that's even a thin)

We've had some difficult conversations since Wednesday around wills and funeral plans and now it's just an awful case of watch and wait. I just feel like all the symptoms we are being told to look for, we've been seeing for a long time anyway its hard to tell the difference. I just feel lost.

Hi EAC3,  So sorry to hear that things are taking a turn for the worse.

Have you been offered palliative care, the nurses are so kind and even though you are in the worst stage you will have their support?

Everyone is different, depends on the area of the brain impacted. In the case if my husband he lost movement in his right arm, followed gradually by the right leg. He had one successful operation and was lined up for number 2,  but was stopped as too risky. He took avastin, we live in Spain, as now not offered in UK. He was on a massive dose of steroids and medication and kept going. But had a sudden brain hemorrhage and died sooner. Potentially was expected to live 3 + months longer.

His passing was a stress on the day he passed away as suddenly his leg gave way, and on  the way to hospital in the ambulance he passed into unconsciousness never to wake up. I wasn't there as went by car later 

There is no nice ending but we just want our loved ones not to suffer, and when they go they are free. It's tough but they know we love them for ever. 

Hi everyone,

Unfortunately things have deteriorated quickly for us. I think we are in the end stages. 

I've put off calling hospice all day but know it needs to be done.

Her sheer stubbornness is something to be reckoned with today that's for sure but as long as she's happy we are just going with the flow. Not really sure there's much else we can do.

so sorry to hear this but call them.  G first went into the hospice here on Wed. They stabilised him and sent him home on Friday. He tried to run and collapsed on Saturday so was re-admitted. Now it looks like he's coming home again tomorrow. It's been a rollercoaster few days but the hospice have been so supportive and understanding. They get it and will support you.

make that call if your gut instinct is telling you its time. 

We've crossed that line where its about us as much as G now. Its horrible. It's heartbreaking but its a comfort to know that at the end we will be supported.

Stay strong. 

Sending love n hugs

Wee Me xx

I always stressed that I wouldn't know it was time, but we know it's time.

She's wanting to stay at home which is fine, but some things need to change. She needs a bed and she needs proper care (at the moment she's sleeping on towels and adamant she won't use the pads provided)

I need a professional to come in who is detached and can have those difficult conversations. It's non-optional really, she needs to allow people to be able to care for her, but honestly I feel like she's hanging on to any last control which I completely understand, but also in the same breath things need to be sorted so she can be cared for properly. 

I'm so pleased to hear G is going to be coming home again, I've been thinking of you today xx

dear eca3, it’s so hard to hear this kind of news 

my brother had very successful surgery, but after 5 weeks of radiation and tmz the tumour came back. He was diagnosed on April 5th 2022, and finished his therapy end of July. The mri showed growth at the end of August. At first dr taught that it can be radio therapy masking the result, and been suggested to repeat in November. But at the end of September his cognitive behavioural got very bad. Talking things without any sense. It was very hard to cope with this situation,  make long strory short: October scan showed significant growth . He had new therapy lomustine and avastine for 6 months, the scans showed shrink of the tumour,  But at the end of April he started to loose mobility in right leg. We got him a wheelchair and hospital bed, it was getting every day worse. Incontinence, dipers and so on. He slowly started not to be able to swallow, we had to thicken water )apparently in those cases they cam choke on liquids). Then in the last week of may he had 6 fits in one day, beeing treated with  valium. He started to turn off slowly, his body but he was aware of people around him.

He peacefully passed away at home on may 31 st, 14 months after he was diagnosed, surrounded with lots of love till very end. He had a smile in his face. 

there are no prognosis, at least no accurate one. But trust me, you will know when ate the last weeks. The palliative care said that if symptoms are changes on monthly bases they have months ahead, weekly are weeks and daily are days in question. And it’s true !!!

give her all your love, tell everything you ever wanted. Ask anything you wanted to know. 
Hope this is helpful in some way.

M.