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Brain mets

22 REPLIES 22
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Member

Re: Brain mets

Me too! I'm very scared and gutted to be losing my hair again. Good luck SDP and hope your scan results were encouraging bill-ben xxxx
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SDP
Member

Re: Brain mets

okay ladies - Whole Brain Radiotherapy for me .. in need of some positive stories!  Anyone?

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Member

Re: Brain mets

Sarah I am the same as you with inoperable brain mets as well as liver and bone, I go the whole hog! I had 5 sessions of radio which was no problem though the 150 mile round trip to the hospital was awful!! I am now on chemo but this was stopped a couple of weeks ago as I have lost too much weight too quickly, 3 stone in 2 months and have landed up as weak as water! For over 5 weeks I hardly ate anything some days nothing everything even water tasted horrible. I have just had a CT scan so the onc can find out what is going on with my mets and change/adjust any further treatment. I go on Thursday to get the results and must admit I am just a tad nervous! Still we must carry on and not let this horrible illness win. Positive attitude is the way to go so keep fighting!!! 

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Community Champion

Re: Brain mets

Bumping up for skelts

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Re: Brain mets

Dear all I was diagnosed with her2 pos breast cancer and numerous spinal mets which resolved with chemo. I had the usual chemo surg rad etc. this was in 2011. Just recently I became dizzy and sick and have been found to have one brain met in my cerebellum. I'm on steroids to reduce the swelling. Today I found out it can't be operated on as likely to cause too much damage so I start rad for 2 wks on Monday. This eve I actually felt quite scared that I won't be here for Christmas. Any advice on this treatment would be soooo helpful. I love the fact that on the whole on these forums there's a fighting spirit and I intend to fight. Sarah x
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SDP
Member

Re: Brain mets

Thanks Nicky - I know I am at a good hospital and my onc is great but I think I will be looking at the Marsden for a second opinion regardless. I just want to be sure xxxx

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Community Champion

Re: Brain mets

Hi SDP

I'm glad you were able to have a good holiday but it's not nice to come back to the 'real' world is it?  I had this last year, as well as earlier this year when we went away, and you feel you want to stay away forever and not just to enjoy having a holiday!  

I hope you have an appointment with your oncologist soon which will reassure you but if you are not happy with his 'wait and see' approach you could always ask for a second opinion?  I have had a second opinion at The Marsden twice since my liver mets were diagnosed last year and it has helped me regarding my treatment and has just, in my case, reassured me that my local team is doing the right thing.

Good luck and keep us posted.

Nicky xx

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SDP
Member

Re: Brain mets

I called my Mac Nurse yesterday to see if I could get any reassurance. Seemed to think if its really small and not giving me any grief that my onc may decide to just go with a watch and wait approach. Not sure I'm very happy about that at all - I want it out .. not to wait and see if I suddenly have a seizure!  Having headaches now and have a heavy eye and am sure its probably just stress and a bad nights sleep.  I have always been prone to headaches and never would have thought anything of them before - now I just assume that it could all be related and am worried. They aren't anything drastic .. had far worse.  Meditation CD that got me through secondary diagnosis has been dug back out ... ARGH - ******* disease.  Hope everyone else is okay today xxx

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Re: Brain mets

Hi. Good to hear you had good hols. Hope MRI went ok. I've had four now but never been told to remove makeup, just jewellery. Weird how all these hospitals have different rules. I did loads of research when I was diagnosed. I found brainmetsbc.org a good one as it had stories from ladies who had lived for several years. Hopefully you will only have one met which they could remove with surgery or target with radio. It's all a bit of a waiting game isn't it. I just try to take each day as it comes and do all I can to fit in as many things I want to do while I can. Keep positive. Sarah x
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SDP
Member

Re: Brain mets

Thanks Sarah - back from holiday now and it was very hard to try and switch off but only one meltdown which is not too bad I guess!   MRI today so hopefully things will start moving now and I will feel better about it all.  Have you done alot of research?  I've been googling (never good) and feeling very disheartened. Keep trying to remind myself that I moved forward after my initial diagnosis so I can do it again but it has all happened so quickly I'm really scared.  I had read that HER2 is very common to spread to the brain so I was kind of expecting it to happen at some point but I thought it was a few years off yet.  Has your onc said anything positive to you?  I don't think its helping that MRI letter says no make up so I look like utter **** today LOL xxx

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Member

Re: Brain mets

Hi. I was diagnosed with a secondary brain met in Feb this year. I was originally diagnosed with primary breast cancer two years ago and had mastectomy, chemo, radio and herceptin. Both primary and secondary were HER. I had one brain tumour which was 1.9 cm. My case was discussed by the MDT and I was told that as there was a good chance it could be removed fully I should have a craniotomy. I had this in March. It was very scary beforehand but actually was not anywhere near as bad as I had imagined. There are a couple of other ladies on here who have also had similar experiences and one who has also had radio as well. I have been doing well recently and my team are working on a watch and wait basis. Hope you have a lovely holiday. If you are worried about possible seizure they could always put you on some epilepsy meds which should prevent these or steroids to reduce any swelling. If you have any questions feel free to pm me. Sending hugs. Sarah
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Member

Re: Brain mets

Hi,sdp,so glad your mind is at rest now. You go and have a fantastic time.huge hugs,Helen xxxxxxx
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SDP
Member

Re: Brain mets

my research nurse came and saw me today while having treatment (ex research nurse now I've been kicked off the trial) and got the onc I saw on Weds to come and talk to me again.  Told me to go and eat nice food and drink nice wine but probably avoid watersports!  Not a problem xxx

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Re: Brain mets

Ahh,sdp,that's soon sweet. If onc said okay I'd go for it. Ring the helpline to put your mind at rest xxxxx
Happy anniversary? Have a fantastic holiday,huge hugs,Helen xxxxxx
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SDP
Member

Re: Brain mets

We're off to Croatia - Oncologist seemed to think it was fine to go but she wasn't my usual one and I'm not too sure how reassured she made me!  Might give the support line a call later to see if it calms me down.  Just had a lovely wedding anniversary card from my husband and has made me cry.

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Member

Re: Brain mets

Hi,sdp,try not to worry and enjoy your holiday. I know that's had to do. Your met is small so it's not causing problems at the moment .are you in the UK ? If so your always near a hospital.
Try and have a fab time as holidays are the best medicine .
Huge hugs,Helen xxxxxxx
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SDP
Member

Re: Brain mets

Thanks for this .. off on holiday tomorrow and petrified something is going to happen while we are away. Seizures seem to be very common ... freaking out!

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Member

Re: Brain mets

Hi SDP

 

I'm sorry to read of your recent diagnosis.  As well as the support you are receiving here you might find it helpful to talk things through with a member of staff on the BCC helpline. Here you can share your fears and concerns with someone who will offer you a listening ear as well as emotional support and practical information.  The number to call is 0808 800 6000 and lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.

 

Best wishes Sam, BCC Facilitator   

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Community Champion

Re: Brain mets

So sorry to hear your news SDP and hope you get some full answers ASAP so a treatment plan can be put in place. If I remember correctly you are HER+ so there is the possibility of lapatinib and/or Capecitabine which both get through the blood/brain barrier, or so I understand. I know of another lady who had this combo and it worked on her brain mets until radiotherapy was arranged. Good luck.
Nicky x

Member

Re: Brain mets

Hi,

 

I'm so sorry to heat your news its rubbish.  I haven't had brain mets so cant't help you there. Though this thread may be helpful for you.

 

https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Brain-METS-and-scared/m-p/8507...

 

Hope they can get a treatment in place very soon.

 

take care

Love

Chris xxx

 

 

 

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Member

Re: Brain mets

Hi,sdp,im so sorry I can't help you with any advice on brain mets. All I can do is send you a massive hug. I fully understand how scary this must be for you xxxx. There are ladies on here that has been successfully treated for brain mets,hopefully they will be along to tell you some information and offer advice.
Massive hugs coming your way,Helen xxxxxxxx
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Member

Re: Brain mets

Oh what a shock for you. If you have a small number of mets I would urge you to look at the possibility of having cyber knife treatment over whole brain rads. It is less debilitating and can be repeated.
Take care. X
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SDP
Member

Brain mets

Morning lovely ladies - don't post very often but could really do with some reassurance. Has anyone been living with brain mets for a while?  I had CT scan results yesterday and they showed I have a small met on the brain .. just waiting for a MRI scan to check there really is only one before they can decide what to do.  Really really scared and husband keeps crying - have come into work today as don't want to be on my own but not sure it was a good idea!