Hi everyone,
I’d really appreciate some advice or experiences to help us figure out next steps for my mum.
She was first diagnosed with stage 4 bowel cancer in January 2020. After surgery and chemo, she was clear until 2022, when two small lung nodules appeared. They were monitored for about two years under a “watch and wait” plan, and she eventually had SABR earlier this year, which worked well.
This summer, a new nodule appeared in the other lung, and SABR was scheduled again. However, this was cancelledafter she developed new neurological symptoms and a lesion was found in the bone at the base of her skull (clivus). Initially doctors thought it might be a benign meningioma, but the latest MRI suggests it has grown and may be metastatic.
It’s now been around six weeks since that was first discovered, and despite scans and multiple contacts, there’s still been no MDT discussion or clear plan. Communication with her main oncology consultant has been very poor and responses have been minimal, even when local doctors have chased. The local acute oncology team have been fantastic and are now trying to arrange a face-to-face review nearby because she’s not well enough to travel.
Her main symptoms are tongue weakness and speech changes, likely due to nerve involvement at the skull base.
I’d really value any advice from anyone whose had or loved one has had skull-base or clival metastases — especially around:
• Which UK centres or specialists (neuro-oncology, radiotherapy, skull-base) were most helpful
• Whether SABR or SRS helped with nerve-related symptoms (speech, swallowing, facial weakness)
• How you navigated slow or unresponsive teams when urgent review was needed
Feeling very let down by the lack of urgency, but hoping to get her the right input as soon as possible. 
️
Thank you for any experiences or guidance.
