Brachyury positive, INI1 lost. This type is treated harder than ordinary chordoma: surgery, high-dose protons, and chemotherapy is on the table. Not in writing yet.
Mark, from the surgeons 12 and 13 Oct · added 13 Oct
about 22 Oct
Diclofenac stops 5 days before
King's give 5 days' notice for this. If the operation is 27 Oct, the last dose is about 22 Oct. Ask King's what covers her pain in the gap.
Mark, from King's 13 Oct · added 13 Oct · open
27 Oct
Operation at King's, by about 27 Oct
Mr Nick Thomas, through the nose (endonasal). "Within 2 weeks" of 13 Oct; could be sooner if another patient moves.
Mark, from King's 13 Oct · added 13 Oct · open
about 8 Dec to 16 Mar
Protons, if that is the plan
Usually starts 6 to 12 weeks after the operation, once the repair has healed and the planning scan is done: so somewhere from early December to mid January. Then about 37 to 41 weekday sessions over 7 to 8 weeks, at the Christie or UCLH. The bar shows the widest range. The real dates come from the proton centre.
Kya, from typical practice (Ares 2009; Mattke 2023). The 6 to 12 week gap is unit practice, not a trial figure · added 14 Oct · open
about 16 Mar
Protons finish, by about mid March
If protons start between early December and mid January and run 7 to 8 weeks, the last session falls between late January and mid March. Mid March is the latest likely finish. The proton centre's dates replace this.
Kya, from the protons card (typical practice, Ares 2009; Mattke 2023) · added 14 Oct · open
An oncology team discussion, soon
The whole plan, not just the operation, before it is set: who the sarcoma oncologist is, and when they see Em. The asks in pink go to this meeting.
Mark, voice note 13 Oct · added 13 Oct · open
Treliske scans to King's
Still uploading on their portal at the consultation.
Mark · added 13 Oct · open
The written histology report
Quickest from Em's own email, Mark copied in. When ready.
Kya · added 13 Oct · open
Fresh tissue at the operation
Ask King's before the day to keep fresh tumour: for whole genome sequencing on the NHS, and for live-tissue drug testing if they can. Consent can be taken at the pre-op clinic.
Mark's idea, 27 Sep · added 14 Oct · open
Can it spread?
Mark is right that it can. Checked 14 Oct: in the published cases, mostly children, spread was recorded in roughly half of those followed up. It was usually later, along with regrowth at the original site, and rarely at diagnosis. The lungs come up most often. There are no figures for adults with it at the clivus. Her chest, body and spine scans were called clear (by phone, not in writing). Ask the oncology team: will they add regular chest CT and spine scans, and how often?
Mark, voice note 13 Oct; Kya, research 43 (14 Oct) · added 13 Oct · open
Protons, or another kind of radiotherapy?
Mr Thomas mentioned other forms. Mark worries they won't be strong enough for this tumour. Ask the team why, and what dose each could give.
Mark, voice note 13 Oct · added 13 Oct · open
One shot at radiotherapy
Radiotherapy can usually only be given once to the same place. Anything that should go with it or before it (a drug, a trial) has to be raised at the oncology discussion, before protons are planned.
Mark, voice note 13 Oct · added 13 Oct · open
An EZH1/2 blocker before radiotherapy?
Mark's idea. Checked 14 Oct: no drug like this has been tried before or with radiotherapy in a newly diagnosed tumour of this type. The lab evidence points both ways. The one patient who responded had radiotherapy after the drug stopped, and it looked like an immune effect. Valemetostat is licensed only in Japan, and its French trial is only for tumours that come back. Tazemetostat was withdrawn in March 2026. So the step now is to keep the door open: ask for SMARCB1 sequencing on the tissue, which those trials need.
Mark, voice notes 13 Oct; Kya, research 42 (14 Oct) · added 13 Oct · open
Chemotherapy: whether, and when
On the table for this type. Weak evidence, real cost. A question for the sarcoma oncologist; the choice is Em's.
Mark and Kya · added 13 Oct · open
Before the op: Mark's day plan
Morning light, walks, breathwork, food that she enjoys. Mark's list from 9 Oct. Kya has the research on breathwork and pre-op nutrition ready for when Mark wants it.
Mark, 9 Oct; voice note 13 Oct · added 13 Oct · open