Very worried that I have brain mets

Hi

Haven’t posted on here for a while as have been really well since finishing treatment last October. I was diagnosed with primary breast cancer in July 2007 and had 12/15 lymph nodes positive.

I’m really worried and very scared at the moment and don’t want to talk to anyone, not even my husband or my best friend. I’ve been feeling dizzy every day, often lose my balance slightly, feel very slightly nauseous every now and then. My memory is Terrible! my husband despairs at me.

I’ve booked an appointment with my Oncologist for next Tuesday and my husband is coming with me. I’ll have to tell him these symptoms on the way there, he won’t be able to deal with it before then.

I’ve looked things up and it looks like I have a high risk of brain mets - under 50, her2+, hormone neg etc.

Shit I’m scared

Any advice ladies?

Hannah
x

No advice really Hannah. But there are viruses you can catch with very similar symptoms. Once we have had breast cancer life is very scary. Like you I was under 50 (45) at first dx, now her2+ (it wasnt known about back in 1990) and er-. I got 2ndaries 7 years ago - extensive bone mets but so far nothing more. I had a scare and had MRI brain after having headaches for some time & nausea. I do hope yours turns out to be a virus but know how hard this is and wish you well for your appointment - and dealing with hubby.

Dawn
xx

thanks dawn, i think it’s scarier somehow once you come out the other side of the initial treatment and allow yourself to think that you might be ok. I have 2 boys, 2 and 4 years old so don’t get any time to think about me, so when I do, it’s scary.

Thanks for your help, will let you know how things go.

xxx

Hi Hannah,

I was 50 when first diagnosed with DCIS and 52 when I got secondaries to the spine. I too have had my brain mets scare - I was getting headaches first thing in the morning and certainly felt more dizzy when I got up quickly and frankly since my diagnosis of secondaries my memory has been appalling. My brain scan turned out to be ok thank goodness and I hope yours will too, but for all of us in this boat the wisest thing to do at the first sign of anything is to get it checked out, - so be sure you are doing a sensible thing, if you can, try not to think about it too much before the appointment with your onc, because the scares are the times that the cancer really wears one down. Hard to achieve I know. Let us know how you get on, my fingers are crossed.

Take care

Could it possibly be caused by stress Hannah. I’ve had my fair share of dizzy heads that can last all day.
Josie x

thanks josie, but i don’t think so. i’m quite in tune with my body and this is something that is very there in my head. i am busy but i’m not stressed, i make sure of that!

i really want it to be something else. it’s scary if i was to get secondaries with such young children, not unheard of of unfortunately, but very scary

thanks

xxx

Keeping my fingers crossed for you on Tuesday…I’m going down the stress avenue and hopeing that’s what it is. You’d be surprised how it can creep up on you.I’m as cool as a cucumber but my dizzy heads started in my late teens,seemed to dissappear when I was pregnant and come back with a vengence afterwards.I was so dizzy at times I couldn’t eat and my memory was also very bad.Thankfully I haven’t had one for years.They dissappeared as suddenly as they began! All I was offered for them was valium…If I was any more laid back I’d be asleep!xxx

Have to be honest that I’m worrying about the same. I was having terrible headaches before I was diagnosed with breast cancer. I told both the oncologist and surgeon but neither seem worried about it. with all the other treatment I’ve been having I’d put those worries to one side but think I will raise again.

My GP seemed to think that the severe headaches were hormonal in nature and that i was in the very early stages of menopause (I’d had a lot of pelvic surgery for endometriosis which can lead to ovaries shutting down) and I had little circulating oestrogen. Don’t know if hormonal is a possibility for you not menopause but something else…

What are the particular signs of brain mets do you know?
Elinda

Hi Hannah,

Sorry to hear your worries, but you have done the right thing going to see yr oncologist. I cant give any advice, but just to let you know youre not alone, as I too am scared…I have just been diagnosed with breast cancer on 20 May 09 and had mastectomy and all lymph nodes removed on 2 July, so still tender. Have had shoulder pain for last 3 months(never had before) or so and have just read that this can be a sympyom of Liver cancer. Ohh crickey - trying to get appointment to see GP as have not met oncologist yet.

All I can say is try to be positive and strong. But lifes so tough sometimes aint it…

Take care

Elizabeth

Oh Hannah…really sorry to haer about your symptoms and your scaredness. I think we all get such scares…and not surprising either. I’m on quite a lot medication right now which causes all kinds of side effects…shaky hands…weak limbs. I do worry about brain mets but I’m happy to be reasssured right now that probably not.

But you are in a diffrent place from me. I think there cmes a point when the faer of something is worse than doing nothing and when you reach this point you will get it all checked out. With secondary bc in any case early diagnosis won’t make any difference usually to survival.

Thinking of you

bwest wishes

Jane

Hi Hannah & Everyone,

I’ve just been through this & out the other side…well sort of!

Finished treatment back in mid Dec. 08, and about a month later, I started having headaches virtually every day.
Finally got things rolling with my hospital & I had the results back from a CT head scan last Friday, and thankfully it all seems to be fine.

I still have to find out what is causing the headaches though, so I will be back to my GP for a referral I guess.

Obviously, I am very relieved. I just hope that anyone in a similar situation has a good outcome… & that hopefully this has been of some help? Fingers crossed for you Hannah & Elinda.

LXXX

thanks everyone for all your comments. I saw my onc on tuesday and she thinks the symptoms i’m having are due to stopping anti depressents recently.

I’m off to france for 3 weeks on friday so she didn’t want to do any further tests before I go, but will do scan when I get back if symptoms haven’t gone away.

Think this is a really scary time when you start feeling like a person again rather than a patient and start feeling that you have a bit of control back over your life. there must be a knack to dealing with all these scares and not letting them take over??? Also coming up to 2 years since diagnosis in couple of weeks which is amazingly stressful actually. I definately need a holiday -been shouting at my boys all day poor things!

jane - thanks for reminding me about early diagnosis of secondaries not making any difference to outcome, it has calmed me down a bit. will find out, what we find out, when we find it out i guess!

anyway, I’m reassured for now and am going to try not to think of anything on holiday (hard as have actually been losing my balance and falling over last couple of days!!) but everything is easier to deal with on holiday isn’t it?? maybe a bit of r and r is all i need!

thanks again and please let me know how you get on elinda

lol

hx

Hi Hannah

I saw my surgeon yesterday for stitches out and discussed the bad headaches with him. He said he thought it was unlikely that it was related to the breast cancer but ordered me a brain CT scan which I’m having next week. He said if my GP referred me to someone else like a neurologist they would get a brain CT scan so he thought this way would be quicker.
The need to get this done quickly is due to the fact I’m starting chemo again very soon and I get so ill on it that a trip in for a brain CT might not be possible.

My GP had thought the headaches were most likely hormonal but the surgeon doesn’t agree. In some ways this makes me more worried because I don’t know what else it could be. I’ve had them badly now for over 8 months and was trying to get them sorted when I was diagnosed with breast cancer. My GP had been trying me on HRT and that’s what stimulated whatever cancer was there to suddenly grow rapidly from being able to feel nothing there to a 6 cm lump in January all in the space of under 6 weeks!

I’ll let you know how it goes and Hannah please do let us know too.

I hope you have a great holiday and hopefully with plenty of relaxation you’ll feel better. I know from friends that coming of anti depressants can be incredibly difficult with all sorts of odd sensations etc so hopefully your Onc is right on that one.

take care
elinda x

Haven’t been here in a long time either. Was diagnosed with secondary in May 2007, in some of my bones. Spreading slowly, due for chemo soon.

Saw Dr at Marsden on Tues and was told I might have the disease in my brain. It was said so casually, I felt my head go really tense for a bit.

I’m on tabs for nausea but still being sick, so more tabs and brain scan in next 2 wks.

I live with depression to so it wasn’t the sort of thing I need to hear.

You say about your memory, mine seems much worse lately. Do you mind if I ask what other symptoms you have.

I’ll keep my fingers crossed for you.

Take Care D x

Hi Girls,

I have only just picked up on this thread and wanted to say hi and that I understand how hard it is once you’ve been through Breast Cancer not to worry about changes in health.

It is always good to get anything checked out, when I was re diagnosed 4 years ago it was my Oncologist who picked up on something I said about an ache in my arm after a days work!!!

I have since had different treatments but until now never had any symptoms from the cancer its self!

I have just been diagnosed with brain mets and although I’m in a very scary place the treatments are changing all the time.

I hope that thoses of you who are stressed at the moment can take some time out and get your batteries recharged.

Best wishes to all,

Bikinggirl.X