So scared, think I have brain mets

Akioli

Hello everyone,

I had my last chemo in april 2016.

Last couple of weeks I noticed I make a lot of small mistakes. Stupid things that could happen to anyone... But they never happened to me, and now so often. Put my youngest in bed without a diaper, but milk in refrigerator without the lid, add salt to the wrong cooking pot, add cold water to my tea in stead of hot water,...

And now since 4 days I have a weird feeling in my head. It feels "full", I feel a pressure from inside... Hard to explain. It doesn't hurt, but the feeling is there.

I know you are all going to say I should have it checked out, but I am so scared. I don't want the whole thing to start over again

Anyone who had brain mets, how did you know? What were your first symptoms?

KBeee

About 6 months ago, I had a similar experience, and also started mixing up words. I was also dizzy. My MO was not concerned because I did not have a headache. Since you have "pressure", I don't know if they would consider that "pain", but it is worth a call to your MO to see how he/she would like to address it.

mara51506

Given your history of BC, an MRI would probably be in order. Though there are benign issues that can cause this, better to rule out BC metastasis first. Fingers crossed for you.

Though brain mets symptoms can be quite different, common ones would be morning nausea, sudden weakness, balance issues.

My own symptoms were actually caused by the tumour growing and making my brain swell. I had seizures, vertigo sensations from the pressure. When walking, my eyes would feel like they were being pushed out of my head. I also had morning nausea. These symptoms got progressively worse over time. Not sure how long I had them myself.

shadylady1

I see you are on Tamoxifen. I told my Oncologist I feel like at 51 I have dementia because I can't even remember the very basics. He said it was due to the reduction of estrogen in my body. I was on Tamoxifen for 5+ years and then switched to Femara a year and a half ago. I have to write everything down now. I am not nearly as "quick" with facts and I have no short term memory. I was completely panicked but I have just had to adjust. I agree for your own piece of mind, an MRI would be best but I definitely have memory issues and make similar mistakes as you! Wishing you all the best!

reflect

Hi Aikioli, Just wanted to say I'm sorry you are having these fears. It's so hard. I would see the doc and proceed from there. It could be something much less scary than you are thinking. I've done all the things you've described (or equivalent)! (((Hug)))

georgiaredskin

I understand your fears.

I have had 4 falls since September 8th, the most recent one being on 12/8. I am a total Klutz, but my nurse friend said “yeah, but you have never fallen." On the third one I fainted. And this last one really hurt-skinned up knees and bruise under the chin.

I, too, am worried and scheduled an appointment with my PCP. Unfortunately my MO does not investigate at all-they only treat once you are diagnosed. I always search this forum for symptoms of mets to ease my fears as well and appreciate any comments.

Praying your symptoms are not mets

mara51506

Georgiaredskin, not to alarm you but your MO really needs to pay attention to your symptoms before versus letting something go. Falls can be caused by many things other than mets but with you being HER2+ an MRI should be done initially to rule things out. Keep insisting on one since if it is mets, you don't want to go through major brain swelling issues. HER2+ does like to travel to the brain. This is not to say you have mets and your issues could be unrelated but it is better to have an MRI to make sure nothing is there. Good luck, I hope they can give you one to set your mind at ease.

georgiaredskin

Thank you so much, Mara. I see him on Monday and will ask for one. Until then I am being very careful walking. My legs seem slower than the rest of my body and what my brain wants them to do. Iappreciate your wisdom and experience so much. What symptoms did you have that led to your dx of brain mets?

Jiffrig

Probably tamoxifen, I think that is a big se for any estrogen lowering drug. I was doing same things and MO said the AI I’m on causes confusion, forgetfulness and headaches. Fun, fun, fun, but ask to be sure, just don’t panic

mara51506

GeorgiaRedskin, Though symptoms do differ depending on where lesions are, my particular symptoms were morning nausea mostly. I would also feel what turned out to be tremendous head pressure, think nut in a nutcracker. The pressure was to the point that I would occasionally have to lay down due to the pressure. That is what led to me going to ER and getting a CT scan of my head. My tumour was big, 8 cm by 6cm and we think I was stage IV from the very beginning of my diagnosis.

I do recommend the MRI for you to put your mind at ease or if there is a problem, address it early. I am presently doing and feeling quite well, my only SE from the brain surgery and radiation is my hair is slow to fill in. Still missing quite a bit where a mohawk would be. If it was worst case and they found something, it is very treatable and NOT a death sentence by any means. One step at a time to rule things out.

The suggestions made by others of a non cancer issue are very valid as well, I am hoping that is the case for you as well.

pupmom

Georgia, they only treat after you're diagnosed, but how can you be diagnosed except by imaging??? NOT saying you have mets, but that logic simply boggles my mind!

mara51506

That was what I thought too pupmom. That does not make sense. What do they do then, look at our breasts and tell us what type of cancer we have? Shaking my head at that statement from her MO.

Akioli

I still haven't called my oncologist. He works in my hospital tuesdays and thursdays. If the 'pressure feeling' isn't gone by tuesday, I will call him. But I really don't want to

I have been on tamoxifen for a year and a half, why would I get these symptoms now. I don't think that's what's causing this.

Georgia, good luck on monday. Let us know how it goes!

wallycat

Akioli, I am so sorry you are dealing with this worry. I agree that the only way you can get peace of mind is my having a scan.

As an aside, chemo-brain is a real thing. I did not have symptoms on tamoxifen till 9 months in, so we are all different. Menopause/lack of estrogen also causes brain fog/memory issues.

Because cancer recurrences can be subtle, the only way to really know is getting checked/scanned. Insist on it. There is no reason you need to live in worry about something that may not be happening at all.

georgiaredskin

Thanks for your symptoms description, Mara and for your support, ladies! I know, right, pupmom?!! When I found out they only follow us up to check if any lumps are present in the nodes and breasts (or non-breast in my case) and leave any other investigation up to the PCP, I was like great! So the experts basically drop you like a hot potato once you are in “remission”. Also they are concerned if symptoms I am having would be related to the chemo or radiation they gave me, which is always no because that was over a year and a half ago now.

Update: I went to my PCP and he did a thorough exam. My strength is good and my cerebellar function is very good. He thinks I am fatigued and deconditioned after all I went through this year (4 surgeries in 5 months) plus GI, kidney and urinary issues this summer, with working full-time and two young kids at home (2,5). The falls all happened on a Friday at the end of a long week.

But he says if it continues or worsens we can do more. I am supposed to start a walking program, which I did this week, and I am a lot more careful not to rush when I am so tired.

Thank you all for caring. Xoxo Hope you have a wonderful holiday