Best Of

@illimae thank you for the additional information! The photo looks like it hurt. I’m glad it wasn’t too bad. I wish I was a naturally optimistic person. I think it would help me through things better.

Strange turn of events from the meeting today. It was a meeting to discuss options, which was never told to me. I got a call on Friday to go over my recent scan results and they said they weren’t sure of next steps, so they would discuss at rounds on Monday and call me back. Monday morning rolls around and I was just given an appointment with the neurosurgeon. I assumed a decision had been made and no one told me otherwise.

Anyways, it turns out I can either re-gamma knife it or have surgery. Neither was presented as the better way to go or the recommended option. He said they’re both somewhat equal. The spot that was treated a year ago is in the middle of two round shapes. The MRI isn’t clear enough to show if it’s all one long tumor or if it’s actually 2 smaller ones joined along the very edge. One of the complicating factors is that it butts up against a large vein and, again, they can’t tell if it’s attached to the vein or if it’s just pushing on it. If I had surgery, and it’s attached, he said he would likely have to leave some cells behind to be treated with radiation ~1 month later. I would also have to come off H&P for about 6 weeks. Which I’m not sure how comfortable I am with either of those risks. However, if I choose to do gamma knife again, they will likely fit me in next week and if it doesn’t behave, then surgery is on the table in a few months. I think I am leaning to trying gamma knife again as it has worked really well for me on the previous ones, knowing that I can do surgery if needed, but I would be interested in your thoughts.

Thank you for listening.

Hello -

I actually joined this group awhile ago and never posted anything. I’m hoping to connect with like minded women living with MBC. I was first diagnosed in 2019, stage iiib; had the standard protocol, chemo, surgery, radiation.Cancer free for 18 months, recurrence in 2021, living with it. On several treatments through the years, did well for a while, now things changing, have lung involvement, pleural effusion, possible spread to liver. I am starting new chemo Eribulin tomorrow. I’m scared, will lose my hair again, I’m assuming won’t have good quality of life?

Anyone being treated with Eribulin? What are your experiences? I appreciate your support.

Thank you -

…scans. I did notice that it became crazy itchy once when my husband was messing around with amateur radio and antenna stuff but I made him turn it off and I was fine, weird.

Here’s a pic (looks worse than it was).

It’s been quiet on this thread, which I hope is a really good thing! I’m writing today looking for advice, tips, positive stories, questions to ask the neurosurgeon, anything you want to share about prepping for, and undergoing, a craniotomy.

My last gamma knife treatment on one small spot was July 2024. The post-treatment MRI showed what they initially thought to be inflammation. It’s been on watch since then and they’ve recently decided I need surgery to remove it as they now say it’s unlikely to be inflammation since it’s continuing to increase in size. As of my MRI on August 2, it’s 3.4cm x 1.7 cm. It’s on the left cerebellum and is “superficial” or “more easily accessible because it’s not deep”. I meet with the neurosurgeon tomorrow. I have had no additional new mets in over a year and my body has had no evidence of disease for almost 2 years.

I flip flop between feeling like this is the beginning of the end and I’m not going to live much longer, to feeling a bit of a sense of calm that they’re going to cut it out and then any others that should pop up can be treated with gamma knife. I am currently asymptomatic although sometimes I think I feel something, whether it be a headache or weakness, but it could be just my anxiety taking over.

I am scared. I am scared I won’t make it through the surgery. I’m scared of deficits this could cause. I’m scared of the surgery causing seeding. I’m scared if this increases the risk of developing LM. I’m scared of having to tell my kids. 

I need to stop googling. Thank you for listening.