What were your 1st symptoms of brain mets?

Nikki1986

I've been having some anxiety about brain mets lately due to some vague symptoms I've been having. It got me thinking what were your 1st symptoms of brain mets?

KBeee

I do nto have brain mets, but the 3 people I know who had them:

One had excruciating pain

One had a seizure

One had stroke-like symptoms

LoriCA

Since metastatic HER2+ has a 50% chance of developing brain mets, I keep a careful watch for any of the following symptoms (this list is from MD Anderson):

• Headaches: These are often the first symptoms of a brain metastasis. They are caused by the tumor putting pressure on the brain and skull. A headache caused by brain metastases usually becomes progressively worse as time passes. It may not get better with over-the-counter pain medicine and it may be associated with nausea or vomiting. It can get worse when you lie down, bend over or bear down, such as when you have a bowel movement.
• Seizures: Seizures can take many different forms, such as episodes of numbness, tingling, uncontrollable arm and leg movements, difficulty speaking, strange smells or sensations, staring and unresponsive episodes or convulsions.
• Changes in mental function, mood or personality: You may become withdrawn, moody or inefficient at work. You may feel drowsy, confused and unable to think. Depression and anxiety, especially if either develops suddenly, may be an early symptom of a brain tumor. You may become uninhibited or behave in ways you never have before.
• Speech problems: Issues can include trouble finding words, talking incoherently and an inability to express or understand language.
• Changes in the senses: Brain metastases can impact your ability to hear, smell or see. This can include double vision or blurred vision.
• Changes in the sense of touch: Your ability to feel heat, cold, pressure, a light touch or sharp objects may change.
• Loss of balance or coordination.
• Changes in pulse or breathing rates: This symptom is caused by the tumor pressing against the brainstem.

When I recently mentioned to my oncologist that I had been having daily headaches for over a month with random unexplained nausea, they rushed a brain scan the next day (again, I'm already metastatic and I am high risk). Happy to say my brain is clear, just because you have headaches it doesn't necessarily mean that it's brain mets. But most of the above symptoms need to be checked out immediately because even if it's not brain mets it could be something else serious (mild stroke, etc).

illimae

Mine was a headache that lasted 3 days, although it turned out to be unrelated. It was a tension headache from breast radiation skin pain, the tiny lesions we found were too small to cause symptoms. Small brain mets are usually highly treatable, so best to err on the side of caution, good luck 🙂

AllyBee

I didn't have any alarming symptoms really. It was only about a week before I found out that my right eye felt like I was looking under water, it lasted a few minutes and then went away. Happened about every second day. The neurosurgeon told me it shouldn't have affected my right eye though. I had a few dizzy spells in the prior months but I have low blood pressure so thought it might have been that. I would request an MRI if you are concerned, just to put your mind at rest. I get so worked up leading up to results time that I give myself headaches and convince myself something is wrong.

Nikki1986

Thank you for your responses. My insurance has denied the MRI 🤬🤬 But approved a CT w/contrast so I have to start there. I'll have that done tomorrow. I'm hoping its just my anxiety getting the best of me. Yesterday I thought I was going to have a panic attack I started feeling dizzy lightheaded chest discomfort. But once I took an Ativan it all went away.

AllyBee

That stinks Nikki that they won't cover an MRI. I'm keeping my fingers crossed for great results for you.

KBeee

If Ativan made it go away, it is most likely anxiety because Ativan would not make symptoms of metastasis go away. If you are having symptoms that are concerning for mets, then definitely have imaging, but if you want it to relieve your anxiety, it'll only relieve it until the next symptom pops up, and with CT scans comes an increased risk of cancer, so there is always a risk-benefit to weigh. It is frustrating and scary to have ongoing symptoms though, and I am constantly wrestling with whether or not to have scan for things, so I do understand. Hoping the CT scan comes back clear.

Nikki1986

My scan was clear! My MO said she thinks its my anxiety. I have an appt with her in 2 weeks so she wants me to calm down and really monitor my symptoms and then we'll see if I need an MRI.

KBeee

Great news! Does she have you on any treatments for anxiety?

Monitoring ongoing symptoms is scary and challenging. If I have a worrisome symptom, I:

1. Write it in the notes of my phone on a page titled "SYMPTOMS". I date it and write the symptom

2. I then focus on what I would attribute this to if I'd never had BC.

3. If the symptom persists beyond a week or 2, I call MO, and I have a log of the symptom, which helps.

4. If it resolves, I put a big X beside it. I used to just delete it, but there is something really calming when writing a new symptom when I see all of the Xs. It tells me this too will likely become an X soon.

Hoping the symptoms resolve.

AllyBee

Wonderful news Nikki