Aug 22, 2013 - 10:20 am
Another 3 days at Mayo this week and I am set to go back next Mon-Fri for SBRT high dose precicison radiation. They consulted with MDAnderson and neither saw an advantage with proton therapy over SBRT. With proton therapy, it targets the tumor and stops but there isn't much in the way of studies on long term yet to look at. Proton 7 weeks, SBRT 5 days. SBRT hits tumor then quickly drops off lessening residual effects and tissue damage to good tissues. 5-10% chance my carotid could hemorrage but 80% chance of reducing or eliminating tumor. I know docs don't usually "come in on" their colleagues but they said thiscould have been found on scan last January and definitely should have been seen on my April scan. A very young, very skilled, doc went in thru my cheek and worked his way CT guided past facial nerve, swallow nerve, carotid, etc. to base of skull for biospy with no damage. I had an MRI and then once mask made, yesterday I had another MRI with mask on that lasted 70 minutes. The mask is heavier than my last and can't have eye or mouth cutouts because of stability and precision set up. It goes down over shoulders. Initially, I felt as if it was chocking me. Unable to open my mouth to say "help me". Terrifying experience. When I came out, I totally lost it, they brought my sister in and she lost it then the nurse started crying. Thankfully, plane was at airport waiting for me and I bolted. Happy it was my last appt. and not the first. I'll need a little help from xanax next week but am determined to get through it. Atleast I know the head pounding MRI won't be part of it next week. My family has been an absolute Godsend. Happy to have an option and hope.