Sue BB Posted January 3 Share Posted January 3 I just had an MRI after experiencing two weeks of increasing vertigo. It shows five tumors in my brain as my lung cancer has metastasized. One is nearly an inch long. How do I deal with that and who do I seek for advice. I will be seeing my oncologist at 8 a.m. tomorrow morning for next steps. I was feeling so good and so hopeful until my last infusion on the 19th of December. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted January 4 Share Posted January 4 Hi Sue, I don't know exactly what treatment you've been getting, but a hard reality of our disease is the high recurrence rate. I have a team that consisted of a pulmonologist (first found my cancer), surgeon (who performed my lobectomy), and an oncologist (who I look to for overall direction and treatment). Your oncologist can work with you to decide if any additional testing is needed and then the best treatment to pursue. He may present your case for a peer review or speak with others for additional input, but those are good things to have happen. I've seen/read from a number of folks on this forum who have had brain mets treated with radiation (e.g., gamma knife) with excellent outcome. In preparation for your meeting write down any question you may have about any aspect of the upcoming treatment, and bring along someone who can take some notes for you. I remember going to appointments where I was so upset that I Hardly remembered what the doctor had told me once I left. My prayer is for you to find another treatment that is effective. Please update us once you learn more about what will come next. Lou Tom Galli and Pstar 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 7 Share Posted January 7 Sue, This is hard news. I'm so sorry you are dealing with it. Lung cancer does seem to like the brain. About a year after my initial diagnosis, a lesion was found on my brain. Because my fist line of treatment included radiation, I had a radiation oncologist on my team already, and the tumor board at my cancer center recommended gamma knife (similar to cyber knife) treatment. Despite the name, no knives are involved! It's a very precise, targeted form of radiation to the specific tumor sites. There are usually not big side effects-- I had none. (My brother-in-law did a 30 mile bike ride the day after his...which is more than I would attempt.) I was also started on Tagrisso, a therapy that targets EGFR-mutated cancer that's gone to the brain. It's a scary time but take it one step, one breath at a time. Please keep us posted. K LouT 1 Quote Link to comment Share on other sites More sharing options...
Sue BB Posted January 8 Author Share Posted January 8 Thank you. I decided to go to Mayo, and wow things have been happening fast, we are leaving today for the first five appointments. I do have radiation schedule here next week, but I will forgo that as I am meeting with a neurosurgeon, oncologist and radiologist plus one more doctor I cannot recall at the moment. I’m terrified at the prospect - my balance is so bad I fell into a wall and stubbed my toe. My husband thought something happened to me the next day as I left a trail of blood from the bathroom to the bed. Kinda funny. The black and blue mark by my left breast not so funny. I could have nailed my port and then ugh. We are going to do some genetic tests, and I heard that the peeps in Mayo may have some new technologies for me. I hope so. I have a pit in my stomach and my children are really worried. Thanks for keeping in touch. I need the connection. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted January 8 Share Posted January 8 Sue, I'm glad that you're getting the help and support you need. I look forward to hearing that treatments are applied and the situation improves. Know that you are in our prayers. Lou Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted January 10 Share Posted January 10 Sue, Treatment at Mayo is a good call. Brain mets are complicated and an experienced treatment team is warranted. I am praying for a good outcome. Stay the course. Tom LouT 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 17 Share Posted January 17 Sending prayers and courage.... LouT 1 Quote Link to comment Share on other sites More sharing options...
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