Brain Mets Sisters

bsandra

Dear @stirfry , could the "increase" be because of misreading of scans or natural errors in imaging? Cannot imagine that small increase considered a progression? Hugs,

Saulius

stirfry

@bsandra It wasn’t the usual Radiographer writing the report. What I have learnt over the last three years is that if they fail to mention a finding they are in trouble, then again over reporting gets them in trouble as well.

My front left Tumor shrank from 3 cm to 2 cm after 2/3 treatments of Enhertu. I was then offered Gamma Knife and decided to attack from both sides. After Gamma I continued with Enhertu. The Tumor is now Necrotic and an outer rim is left. It is irregular in shape. I read too much and am worried that this could be Necrotic spread, and if not caught at the right time could cause further damage.

I’m based in the UK under the NHS, my Oncologist does not always communicate fully. They told me This would be a Marathon, but I am still running up to the Hurdles and pulling down the obstacles with my bare 🙌.

illimae

@stirfry I personally wouldn’t panic about the growth of the lesion, it’s still small and “red alert” may be a hospital thing to get noticed and perhaps does not indicate an actual emergency or urgent issue. However, my big concern would be not being on a reliable scan schedule. Unless this is an isolated incident, there should be no problem planning ahead and getting scans booked well in advance.

stirfry

@illimae I totally agree about not being on a reliable scan schedule. This is unnecessary, but what I am being put through. This adds to my anxiety. Thank you for reassuring me that I am not being unreasonable. I think the next Onc meeting will be a long one.

bsandra

Dear @stirfry , could you go for yet another opinion (to another radiologist) with scan results, so that he could read and reevaluate the scans? I think this could be done in some private clinics, what do you think? Hugs and happy Easter! Saulius

stirfry

@bsandra it has been referred on to the Neurology team including a Neuroradiologist, for their take on things. They held the meeting on Monday, I will not know the outcome until I meet with my Oncologist next Tuesday.

I am waiting to see if they decide to order a more specific scan.

Happy Easter!