Glioblastoma- friend- confused re treatment

Hi there,

Welcome to the group. So what you're describing is very similar to what happened with my wife. First it was inoperable and then it was operable. In her case it was because we hadn't yet seen the oncologist and the neurosurgeons assumed from looking at how big it was that there wasn't much point assuming that she was near end of life. Also the lead neurosurgeon was on annual leave that day. After we saw the oncologist he rereferred it back to them saying that her quality of life is still high and could they reconsider. Well, that was last July and here we are 9 months later after successful surgery, radio and chemotherapy. 

The stats will tell you that surgery is the best option if it's possible but obviously does carry certain risks which they'll talk her through. I don't know why they've changed their minds for your friend. It could be for a very different reason but she should definitely ask what happened. 

I imagine they'll try and schedule surgery quite soon so I hope it all goes well.  If you have any more questions at all about what comes next then just come back here and usually someone will have experienced something similar and can offer advice.

All the best

Chris

Thank you so much, that has given me a positive spin on it now, they are hopefully operating Friday.

Hi Blonde

a warm welcome to the group. So sorry to hear about your friend.

As Chris has already said, there could be several reasons why there has been a change of approach here. 

My husband was diagnosed GBM4 in Sept 2020. The initial plan was biopsy then surgery from  the first neurologist  but he said he would take my husband's case to their weekly MDT meeting (Multi Disciplinary team) the following week. We then got a call to say change of plan - no biopsy, straight to surgery to debulk the tumour. We met with the neurosurgeon on the Friday and surgery was the following Wednesday. 

It seems its quite common to change the approach once everyone has had a chance to chat through the scan images and options. 

There are no hard and fast rules for how things will go. Everyone is unique and each tumour unique to them. There are some great guidelines on the main website about how you can support your friend. Here's the link Supporting someone | Macmillan Cancer Support

I don't want to sound doom and gloom but the next few weeks could be a bit of an emotional rollercoaster for your friend and in turn you too. Can I suggest you be led by what she wants and needs and kind of go with the flow of things. This is a huge thing to process and it takes time for everyone involved. 

This group is a safe and supportive space so please feel free to reach out anytime. There's always someone around to listen who gets it as you've already seen, someone to hold your hand and to offer that 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 I'm sending you both a huge virtual hug and lots of positive energy. Stay strong.

love n hugs

Wee Me xx

Oh thank you so much, I am aware it’s going to be like a rollercoaster, just they said when they did the biopsy there are 3 tumours linked with feelers spreading out, which was why they said inoperable, I understand each person is different, I supported my mum through heart failure, who we lost 10years ago, my father a stroke and now with vascular dementia, but I have never had to deal with cancer, this is all new to me.

she is so positive and actually excited they have changed there mind.

she does not know what cancer it is nor grade, this was told to her husband during the biopsy, who was told to keep her in the dark, which he did, but told my husband and I as obviously he needed someone.

she still does not know we knew or should I say know how bad it is, I think she thinks they can remove it all and a bit of treatment all will be good. Is this 

thank you for the links, I have already read a lot on the cancer but what to expect I don’t know

ie how long in hospital,?do they do the op awake?, how long after surgery start chemo and radiotherapy?

she wants her eyebrows micro blading or whatever it’s called, but I have read not advised during treatment.

could it be done prior to op and treatment ( I have read treatment usually 6 weeks after surgery.)

maybe oncologist can advise on Monday x

thanks again xxxxx

HI

as I said before everyone is unique. In my husband's case he had his op on the Wednesday. It was an awake craniotomy  and he was discharged on the Friday. Unfortunately he developed an infection and was re-admitted on the Sunday for 5 days. His 6 weeks of oral chem/radiotherapy started about a month later. He coped really well with it at the time and had no real side effects other than fatigue which kicked in about week 4/5 and lasted for about a month after the 6 weeks were up.

I can't comment on the eyebrow thing but perhaps a question for your friend to ask at her next appointment.

love n hugs

Wee Me xx

Hey Blonde,

Others have given excellent thoughts here which I won't add to.

I'm really curious as to why they have told your friend's huband without telling her.  The only situation that would normally happen in is if she has said she doesn't want to know but is happy for her husband to know.  If what you have written is correct then that sounds like an unfair burden to put on husband.  The treatment journey is tough enough on the relationship without people keeping things from each other.  Your friend needs the opportunity to make an informed decision about her treatment.  She may choose not to know details (lots of people choose not to know life expectancy, for example, since it doesn't really mean that much to the individual case) - but she does need to know what she is up against.  I presume that the oncologist will walk her through what the diagnosis means very soon.

My wife read or was told several things she "shouldn't do" while having treatment, but her oncologist said most of them were fine.  As you say - the oncologist can advise.

I'm glad your friend and her husband have you to call on when they need support.  This is a bugger of a disease and they are both going to need a lot of love and care and support.  And as others have said... make sure you look after yourself as well.

Big hug...

Pete

Hi Pete,

yes we were also surprised her husband being told and not her, however we live in Spain, so they do many things differently here, but I can say they have acted very fast, she only saw the specialist as could not get rid of vertigo, mri showed the 3 tumours, which she knew. Her husband feels like a weight has now been lifted of him as it was as you say a heavy burden to carry, but he had us, which she does not know.  This site is really helpful, and others wonderful too.

I have a feeling the oncologist will tell her everything on Monday, as she still does not know what cancer it is nor grade, she thinks they are now going to remove it, have treatment and that’s it, not the case.

there is no cure for this, type and I explained this to her husband yesterday, it will be a case of learning to live with it.

I think Monday is going to be a very big day for them both, thank you for your kind words,  very much appreciated

d x