To say we are devastated is an understatement. From what looked like nothing, but we visited A and E anyway, went from being a mild stroke to a brain tumour in a week.
My hubby is 58, fit and healthy, never had a hospital appointment, let alone having brain surgery.
They have found signal change all over his brain with one area which showed up brightly on MRI. They biopsied that area using guided imaging and with a craniotomy as it was in an eloquent area. The initial results came back as high grade but they weren’t sure exactly what. He was then sent to oncology who confirmed it was a grade 4 glioblastoma with diffused area all over the brain.
He has started TMX chemotherapy last week - all of this has now taken 11 weeks from the initial scan - with no mention of radiotherapy to the area which has shown more brightly. He is really well in himself and once recovered from surgery has had no other symptoms.
The neurosurgeon showed us scan after surgery and eluded to the fact that he had debulked as much as he could, but the oncologist said it was a biopsy. The letter has finally arrived from the surgery 10 weeks again and no mention of debulking in the letter. We are very confused and worried and starting to feel like we should ask for a second opinion. By the way, the part of his tumour they biopsied was also unmethylated. Although the oncologist admitted that it could even be two different tumours and the overall signal change everywhere in his brain could even be a lower grade.
We are both aware that his prognosis isn’t good but we still feel like we should explore all avenues.
Does anyone have any advice or experience of second opinions as we don’t want to delay any treatment any more than it already has been.
Hi Mumma3
a warm welcome to the group. So sorry to hear about all that your husband is going through. Life's cruel.
I can empathise with the journey you are on as I supported my late husband through the three years of his GBM journey.
I would encourage you to speak to the oncologist to get some clarity around the treatment plan for your husband. Write down all your questions/fears, no matter how trivial they may seem, and take those notes to the appointment. They can act as a script and will help make sure that you don't forget to ask about something that's important to you both. If you are still dissatisfied after that then perhaps seek a second opinion. The key here is to ensure that there are clear open communication channels between you and the medical team and that you understand the plan. It may be worth asking about clinical trials in your area too.
In our situation, G never had a biopsy. He had an awake craniotomy to debulk the tumour and we got the pathology results of that two weeks later. He was 50 when he was first diagnosed out of the blue and a fitness fanatic/marathon runner. In the space of 3 weeks, we went from the first scans to bringing him home after surgery. It's all so much to take in and process.
This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
I personally drew a lot of support from this community and a couple of other groups -Glioblastoma multiforme brain tumour forum | Macmillan Online Community and Cancer carers forum | Macmillan Online Community
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 a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
if there's anything else I can support you with, just ask.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
