Second operation?

Hi there,

sorry to hear about your mum. I know when I've asked about this for my wife the doctors have warned that it's not that common they do offer a second surgery. So that suggests your mum's clinical team  do think this is the best way to combat what's regrown and that they think your mum is strong enough for surgery. Has she had radiotherapy or chemotherapy at all? It's quite unusual to hear of someone having had surgery as recently as 6 weeks ago to then be offered it again or did you mean Jan 22?

Take care of yourself,

Chris

Thank you for your reply!It is shocking how fast it grew back, we are all devastated. We found out about her brain tumor in December 2022 she had surgery January 2023 and than waiting for biopsy as Dr thought at first that it's astrocytoma. She was just about to start radiotherapy and chemotherapy but she didn't had a chance. Now we're in between and don't know what decision to take 

HI AndradaC

a warm welcome to the group. So sorry to hear about your mum. Life's cruel.

As Chris has already said, it's unusual for a second surgery to be offered so soon. Was the initial one perhaps a biopsy to determine the tumour type? Either way I'd be led by what your mum's team are advising but you also need to take her wishes into consideration.

My husband was diagnosed GBM4 in Sept 2020 and at the very start of our journey I promised to support whatever decisions he made, whether I personally agreed with them or not. At the end of the day, its all about what your mum wants and can cope with. Hard as it is, you need to respect that.

In my husband's case he always opted for the option that gave him the best quality of life rather than quantity. Everyone is different though and everyone's situation is unique.

Can I suggest that you write down all the questions/fears/concerns that you and your mum have and take those to the next appointment. it's easy to feel overwhelmed in those early appointments so the notes can help to keep you on track and will help ensure that you remember to ask all the things that are important to you both.

This group is a safe and supportive space so please reach out here anytime. There is always someone about who gets it, someone to listen, to hold your hand and to offer a virtual hug when its needed. You're  not alone,

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now though I'm sending you both a huge virtual hug. Stay strong

love n hugs

Wee Me xx

Hey AndradaC,

Sorry to hear about your mum's situation.  As Chris says, offering another operation is quite unusual and suggests that they think it is worthwhile.  Very often they cannot offer a second surgery because the tumour grows back somewhere inoperable.

But you have absolutely nailed it... this is about what is best for your mum and what she wants and feels she can cope with.  As you know, there is currently no cure for this horrible disease.  So at each stage it really is a decision for the individual (supported by their family) as to whether they feel they can cope with more treatment - and that probably depends on your mum's experience of the previous operation. 

Just to clear one thing up - in case you get into some confusion talking to the doctors... GBM4 is a type of astrocytoma.

Meanwhile - as others will keep telling you... look after yourself as well.  This really takes its toll on the carers and family too.

Big hug...

Pete

Thank you everyone for the support and kind words... it means a lot...

I just can't...  I didn't even get totally used that she has cancer, I still had moments when I found asking myself if is a nightmare, finding myself talking by myself that this is not possible, not real, can't be. reading everyone story in here where people lived 1 year, 2 years or more after they've discovered it it made me think positive, hoping for the best. Now, I feel like I don't have anymore hopes, l feel powerless to the disease and the situation

Neurosurgeon said the tumour is invading the brain very quick, it grew back bigger than it was. In this second surgery all he can do is to reduce the size which will make mom live longer few weeks

My mom she's 50, she never had health problems, anything. Her wellbeing started to crumble in summer june-july 2022 when she found out her sister had liver cancer, stage 4. She was scared, she cried her eyes off, she was so scared that she did some investigation for herself including a CT scan, everything was fine back then. I asked her countless times to take is easy, to think about her also, that being everyday sad and crying that much is not healthy but she'll never listen. In the end of November mum helped aunt to clean the house prepare it for Christmas as she couldn't do much already. She didn't had operation as it was too advanced but had chemo which made her hair fall. Mum had to cut the remaining one and that was the moment when she just went "crazy". The next days she cried and cried and then one day she couldn't get off bed because of her headache. One week later she had a seizure and we found out about her tumour. They called it astrocytoma but said that is not malignant until biopsy. And from here you know the story...

I've been writing all this as it looks like a drama movie to me. And what I hope I've learned from it is that however painful it can be, we don't have to take someone else disease on us as it's ours, it can be fatal

Really big hugs for anyone having to deal with this ...

Hey AndradaC,

It's not surprising you are struggling. You have had a lot to get your head round in a very short time. Many of us here have been in a similar situation and it had the same effect on us too.

It is really tough when you don't know what you do. We all look for the "right" decision, then second guess ourselves that perhaps we should have said or done something else. There are no right or wrong decisions here. Only you have to do the best you can with the information you have.

I'm sorry your mum is having to go through this. And I'm sorry you are having to deal with the agony of watching. It is a brutal disease and all feels very unfair.

It's really important that you remember that this isn't anyone's fault. There is nothing that you or your mother or anyone else could have done. Especially for GBM4, there are no known links to lifestyle or other factors. It really odd completely random.

It's normal to be upset. Be patient with yourself. Where you are standing now you can't imagine how you will ever get through this. But there are lots of resources there to help, lots of professionals that will be there when you need them. It's going to be tough for you, but you're going to stand through this and you'll be able to give your mum all the love that she needs. And knowing that you have done that will be the strength that gets you through.

A wise GP said to me that if anyone offers to help "just say yes". You are going to need friends and family around you. People want to help. Even just things like sitting with your mum so you can get some time out, going for a walk, can make all the difference in helping you feel like you can keep going.

Thinking of you... Take care.

Pete

I had my surgery (removed 95%) early September 2022 then radiotherapy and then chemo, but after my last scan last week as it’s showing growth so will be going into surgery again soon but I will know more tomorrow as i have a meeting with my oncologist 

Hope the meeting with the oncologist goes well

love n hugs

Wee Me xx