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Not Quite new... but scared now with Brain Mets

2 REPLIES 2
Nellgwyn
Member

Re: Not Quite new... but scared now with Brain Mets

Hi Bill-Ben - Do you mind me asking have you had any radiotherapy to your brain mets yet? It sure is scary! Mx

bill-ben
Member

Re: Not Quite new... but scared now with Brain Mets

Hi Nellgwyn, I know exactly where you are coming from. I to have brain mets which were diagnosed summer last year. I to have had a lot of problems lately. Although I feel very well in myself I have very wobbly legs and have been in and out of hospital mainly A&E following falls. I have fallen four times in the past few days and the latest MRI has shown the tumour in my brain has grown and is now blocking the fluid normally in the brain from draining away. I am being sent to Plymouth to have a stent put in my brain which is mega scary! I am a bit cross because my brain hasn't been scanned for over a year as I feel well and have no symptons would things be different if I had had that extra scan. It is a scary time when your whole life is in someone elses hands.I do hope you get the treatment you need but scream and shout until you get what you want! Unfortuneately treatment and what is available is very post code lottery especially if like me you live in a rural area! Keep us up to date on how you get on.  Vickyxxx

Nellgwyn
Member

Not Quite new... but scared now with Brain Mets

Not sure where i should post this .

I had BC in 1991. Had long period of good health before SBC diagnosed in May 2014. SBC was in chest lymph and stomach nodes and  maybe in pelvis - after shaky start with Anastrozole and Tamoxifen i went to to chemo (Carboplatin and Placitaxol in mid December and by April had a resounding success. - lots of NED. I do have left over neuropathy in my feet which is bad! I have had some heart problems and a suspected TAI and am on anticoagulants , beta blockers and High BP medication - that is all. I have been treated at my local hospital (Calderdale). At the end of September after a goodish summer and after a revie , my tumour markers and scan showed some cancer activity had returned in my lymph nodes. At the same time (remarkedly in same period of couple of weeks) I had just experienced some brain events .. a bit of dyslexia in email, very slight differences in thinking - imperceptable but frightening… i mentioned this and ONC ordered a MRI scan. He told us next day that they found several spots on brain and they would treat next week with Whole Brain Radiotherapy then Chemotherapy - all this very frightening and quick. I surely thought i would die there and then of a seizure washing up! Very quickly we arranged for me to have a second opinion a the Christie hospital last Friday and they will check out whether the Gamma knife is suitable and whether my ER status has changed etc and come back to me in the week. I’m feeling ok - got over extreme panic. BUT by yesterday i felt a bit woozy all of a sudden (standing up talking in kitchen) and I must have passed out a few seconds only, David called an ambulance and after hours in A&E  and tests they thought I'd had a feint not s seizure and sent me home - none the worse. It is frightening thinking i have brain mets and I might have a seizure which changes everything immediately. Any advice or reassurance would be helpful to me! Many thanks. Mxx