New here. Not even sure exactly how this works. My husband was diagnosed with Glioblastoma stage 4 in early June. Surgery debulked (?) the tumour and the surgeons were very happy. He has just this week started 6 weeks of chemotherapy alongside radiotherapy to be followed by six months of chemo five days a month. We understand this is all relatively standard. We know the tumour is treatable but incurable but have no idea what the prognosis is. Of course everyone is different and responds to treatment in different ways. One thing that we can’t yet seem to do and don’t actually know how to do is to ask the question of what the likely timescale is. We can barely bear to think about it ourselves never mind address it formally. Who is best to ask. The oncologist or the specialist oncology nurse. I think we are also scared to hear the answer.
HI Caitriona,
I'm so sorry to hear you've been thrown into this awful situation. I cared for my wife who had a GBM.
Below is some of the info I share with everyone who is new to the forum but just to address your question on prognosis. My wife's surgeon said that after debulking she could expect up to 2 years. In the end it was about 20 months but as you already know, everyone is different and I know of people who've remained relatively well for several years before the tumour has come back.
If you do want an answer then the oncologist or specialist nurse might give you some indication but it may well be a standard line based on average survival time post surgery.
There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.
When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.
Have you or your husband been offered any counselling at all? Either way it’s always good to talk so please remember you can 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.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.
Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.
Sending a hug,
Chris
