Brain Mets Sisters
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@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 🙌.
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@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.
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@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!
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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.
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Dear @stirfry , I really understand how scary this all is but your MO being not worried is encouraging, especially when she has already seen this in practice. I think if we sum everything up, there's a lot of hope next scans can be really good, and you'll have a great holiday! Please keep us posted, Saulius
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@harrow I did have an issue with the brain again. I'd previously had whol brain rads and then a second round to the surgery site. Unfortunately, that caused an issue that had to be removed. Second surgery removed the cyst totally, I recovered fine with that but it turned out to be some necrosis caused by the second round of radiation given. All of the necrosis was removed, have the usual MRI scans every three months. I was worried at first for sure but since it was at the back of the brain, nothing much is controlled there so no loss of cognition or dizziness I can notice. Still a hungry person so make many cheap, nutritious meals and post on the regular on the other topic. For now I just keep pushing along. Have appointments and go on.
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@mara51506 great to hear that you’ve recovered so well from a second surgery! And even better news that it was necrosis from the second radiation. I really admire your ability to stay present and positive. I need to do better with that.
I had a spot in my left cerebellum that showed up in July 2024, gamma knifed, treated again in August 2025 but recently was causing concern with lots of swelling (likely mixed tissue) so I had surgery. The surgeon was able to remove 95% of it, with the remaining 5% stuck to the upper part of the transverse sinus (too risky to remove) so it was cauterized. I have a follow up MRI in a few weeks. I am hoping the pathology will show it was all necrosis but that doesn’t sound likely from what my surgeon said. Somehow, I think that would make me feel better or like I have more hope or something. Even though having it (whatever IT is) mostly removed is a good step too.
I tend to focus on the “what ifs” and forget that I am NED in my body and other than this one stubborn spot, I haven’t had any new ones in my brain almost 2 years.
Your experience, along with several others, provide me with hope and calm. Thank you for that!
Thinking of everyone out there.
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