Hi, I am new to the group.
I was diagnosed with an acoustic neuroma in autumn of 2019 with a 14mm tumour and was put on wait and watch. A follow up scan in Spring 2020 showed no significant change. The next scan was scheduled for 2022 and was done in June. I have just seen the neurosurgeons and have been told that whilst the tumour has remained at about the same size as on diagnosis that cysts have formed around the tumour and more or less doubled its' size. Surgery is out of the question due to other health conditions so I am being considered for radiotherapy which if done will be a single dose.
I would be pleased to hear from anyone having cysts on a tumour and having radiotherapy.
Hi Jim1947
a warm welcome to the group. Sorry to hear about all that you are going through.
I'm supporting my husband through his stage 4 brain tumour journey and can't offer any personal thoughts/experience on cysts on a tumour as that's not something we've encountered along the way. He did have 6 weeks of oral chemo and radiotherapy combined at the start of this journey once he'd recovered from surgery. He coped really well with it. His biggest complaint about the radiotherapy was that the mask was very tight (it has to be) and that they kept squashing his nose. He had some hair loss around the area that they targeted but it's grown back since. He also suffered from dry skin after a few sessions- a bit like sunburn - but the CNS was able to prescribe an emollient cream to alleviate that.
By about week 4 out of the 6 he was quite fatigued but that passed about a month after the treatment ended.
I hope that has been of some help.
This group is a really safe supportive space so I'm confident that someone else will be along shortly to offer their words of wisdom. Please reach out here anytime as there is always someone around to listen, someone who gets it and someone to offer that virtual hug if its needed
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 a huge virtual hug.
love n hugs
Wee me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
