Brain MRI every 6-12 months?
Have any of you been told to get a Brain MRI every 6-12 months "just in case" by your MO?
Before starting treatment 2 years ago, I asked my local MO if I should have a Brain MRI and she stated, "Only if you are having symptoms." At that time I also had an MO at a distant teaching hospital. She insisted I have a Brain MRI prior to seeing her before starting any treatment. I decided to get one at that time due to ongoing sinus headaches. Could they be tumors? That Brain MRI was fine.
A year later, after radiation to a small bone tumor and some soft tissue behind the bone met, my other MO (at the teaching hospital) again suggested I get a Brain MRI. I had just had a PET/CT that was NED and a negative Signatera test. Again I got the Brain MRI. All clear.
Now, for some reason, my local MO started suggesting I get a Brain MRI every 6-12 months "just in case." I personally see no reason to do so given my current NED status as well as the NCCN Breast Cancer Guidelines that state: "Brain MRIs are only recommended in advanced breast cancer patients when neurologic symptoms are present" and "routine screening of asymptomatic stage IV breast cancer patients with brain MRIs is currently not recommended."
Additionally, I have read through the entire sheet regarding the contrast dye that they administer with MRIs and major complications can occur with this dye. I don't feel it is in my best interests to have repeated Brain MRIs "just in case."
Can any of you share your Brain MRI experiences (reasons) and your MO's advice on getting them? Thanks so much!
Hugs, Pam 💗
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@livinglifenow as someone whose brain mets were discovered incidentally by a MRI as part of the HER2Climb trial, so not typical protocol, I am all for this. I was completely asymptomatic. I had 3 spots treated by gamma knife in March 2024 which resolved. I then had another one show up in July 2024 in my left cerebellum. It was treated with gamma knife but continued to grow so was treated with gamma knife for a second time in August 2025. I recently had surgery to remove it as the swelling was starting to cause issues. It’s likely it wasn’t all necrosis, unfortunately.
I think brain MRIs should be standard protocol for anyone with HER2+. It apparently has a very strong affinity for the brain. Waiting until someone has symptoms to scan is crazy to me. Had I not decided to join that trial to try and prevent brain mets, I don’t know where I would be right now…
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@harrow Thanks for answering my question. As you can see from my post, I have already had two Brain MRIs and both were negative. So, fortunately for me, nothing was missed when I had active cancer.
I’m curious, do you get regular Signatera tests? For me they are very accurate.
Also, are you currently NED? Just trying to do a comparative analysis. 🧐So glad your brain Mets were found in the trial.
Best, Pam 💗0 -
@livinglifenow my MO has never offered Signatera tests, nor have I asked. I just do CT and bone scan every 4 months or so, and a brain MRI every 3 months (right now). If I get to a place where I have no new spots in 3 years, the MRI will move to once a year. Yes, other than this one stubborn sport, I am NED. I don’t like saying that out loud, feels like a jinx haha
I’m happy to hear you have a team that is offering the scan to you rather than you having to try and fight to get one. So glad your results have been negative!
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@harrow Thanks for the updated information. It helps to hear from others regarding their treatment and experiences. So glad you are (shhh, I will say it softly) NED.
Wishing you clean imaging for years to come!
Hugs, Pam 💗0 -
Hi Pam! Just wanted to pop this study in that we published recently, as you may find it helpful:
We hope this helps!
—The Mods
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@moderators thank you for sharing this study!
@livinglifenow I wonder if this is why your doctor is now recommending the scans. Like you, I am ER/PR+, HER2-, and my MO said when I first got my metastatic diagnosis, last February, that they don’t recommend brain MRIs for that cancer profile unless there are symptoms. I consider her to typically be up on the current science so I will ask her next time I see her (I’ve seen the PA my last two appointments) and see what she says.
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