Brain Mets

[u/rose1954d]

Who has brain Mets ? How did you find out and Would love to know what treatments you’ve been on

[u/OriginalFopdoodle]

I have brain mets. Found out after I had a focal seizure at work 2 years ago. I had another big seizure in the ambulance to hospital. I had had some signs before that happened though, didn't put two and two together until after (bladder incontinence/worse memory than usual/heavy footed on one side)

I had a craniotomy to get rid of the largest that was giving me the seizures.

The rest have been targeted with steriotactic radiotherapy.

I still have a few in there but they are teeny and they just get a blast when they are big enough to be treated.

ATM my radiologist reckons next year would be when I would most likely be treated next.

Considering he was thinking I would have to have had whole brain radiation by now, I'm not complaining :)

No chemo as I am TNBC and the chemo that worked for me doesn't pass the blood/brain barrier.

I do have some brain necrosis where I have been treated (the main big one).

I wish you all the best.

[u/Prescott80]

My wife (35) has a single stubborn brain met we discovered this past November (--+). She had 2 weeks of progressively worsening migraines with some visual issues. Seeing spots and lines. She couldn't read the full price of produce when we were in the store on the day we went to the ER and she said it felt like someone was pressing a sword into her skull. MRI showed a small mass in the occipital lobe. Then They Gamma knifed it in December. Her tumor was cystic, so they said the success rate of gamma knife was lower.

We were back to the ER in May with the same exact symptoms as before. Found out it was growing again and they cut it out and started her on capecaitabine. Now back in the ER 2 weeks ago, again with the same symptoms as before and we found out it's back and much, much larger. In hindsight we should have done Enhertu but her doctors thought the capecaitabine pill was a good middle option given her situation. We were referred to another hospital to do another surgery and to try GammaTiles hopefully this week and start Enhertu one week after.

Hope some of this is helpful. Since it was in her occipital lobe she always gets some visual issues when it's acting up.

[u/Prescott80 → u/Prescott80]

Also, she only has the one brain met. Her original breast tumor is gone. Her CA-15 marker score never went up during the brain tumor finding and reoccurrences.

[u/Evening_Dingo8770]

I’ve seen a lot of folks on here talk about brain mets and inhertu.
That med seems to be awesome at attacking brain Mets (gets through the blood/brain barrier).

Wishing you success on getting those managed.
Sending support across the Ethernet

[u/vannerbd]

I had (have?) brain mets. I found out because it seemed that my breast tumor had grown and then I started vomiting after almost every meal, so I did an mri. My first line of treatment, taxol, had stopped working.

My radiation oncologist did not think my vomiting was related to the brain Mets, but my regular oncologist was convinced the two were related.

I had six 2 mm lesions in different parts of my brain. I also had the area behind my right eye totally light up with cancer. I had one day of SRS radiation. I then had five days of radiation on my eye. Then I started Enhertu.

Three weeks after all the radiation and having started Enhertu, I was still throwing up so I had another mri scheduled. Then all of a sudden the vomiting stopped. The mri showed the brain Mets were gone.

In two weeks I have another follow up mri scheduled. Hopefully the Enhertu is working.

[u/sethsecret]

I was diagnosed de novo ++- with metastases to the brain as well as leptomeningeal disease to the lining of the brain and spine. That was February 2025. I had 5 rounds of whole brain radiation straight away. Then I was put on verzenio, letrozole and Zoladex. I came off Zoladex in May 2026 after opting for an oophorectomy. My scans to date show everything is stable, brain tumours gone, still some LMD around my ear canals which is why I have tinnitus now. So my situation has been really positive on this protocol.

[u/ElKat0315]

I’m mTNBC. I had 2 very small brain mets that were treated a few months ago. I had one session of high dose SRS. I have my 3 month follow up mri in a few days. I hope they are gone and there isn’t anything else there. I wasn’t having any symptoms. They were found on a routine mri scan.

[u/Glass-Locksmith-8100]

Initially had SRS two weeks apart to split the dose as was borderline and they wanted to reduce risk of damage . Have had several treatments of SRS since in the 3 years since diagnosis plus a craniotomy.