Brain Mets Sisters

@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 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 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!

Dear @bsandra the Neurology team had their meeting on the Monday, but I had no feedback until I met with my Oncologist the following Tuesday. I am still waiting for a further scan which will be the middle of May. I am told there is no Edema, and I have no symptoms. I think it’s difficult to diagnose a delayed inflammatory response. Unless symptoms occur the team would not do anything. I was told by my Oncologist if I had a seizure to take myself of to the nearest Accident and Emergency. I could have arranged a private scan, but do not think it would prompt the team to do anything. The Oncologist thinks there is nothing to worry about. She says that she has seen this in previous patients who have had Gamma knife and Enhurtu.

Of course I am not totally convinced. So I am going on holiday before and after the mid May scan. I cannot live life looking over my shoulder waiting for a seizure to happen. In the UK we are under the NHS and it’s failing. They have arranged a MRI Head and Spine scan together. I have had a recent CT scan of the spine and everything is clear. It’s just this one Brain met. Will report back end of May.