well as if the secondary breast cancer in my lungs is not enough my oncon found something measuring a cm in my brain its inconclusive so far, so awaiting emergency scan. any info on brain mets would be great and I will tell more when I hear more hugs xxx
Hi Liz , me again. S has put a link in a post in chat girls, worth checking.
Julie xxx
Hi there
I can’t offer any advice but wanted to wish you all the very best 
Fingers X’d for benign results from ur brain scan
tina x
Oh NO lizzie! Hope it will be nothing to worry about and hope they get you sorted quickly so that you don’t have to endure the worry for too long! Big hugs to you, love Julie xx
Hi Liz
Just wondering how you are getting on?
Laurie x
Hi just bumping this up hope your doing ok Liz . I’m goin for a ct scan on my head on thurs. not sure what to expect iv been getting lots of headaches and sometimes nausea n eyes feel a bit filmy sometimes not sure if this is related but worried anyway. I’m also having trouble with my coil had no periods for over a year due to chemo but have had 3 or 4 regular since but have missed this month have done pregnancy tests and negative but doctor cudnt find th threads so I’m havin a smear tmoro n she’s goin t hav a better look n if she can’t find them il hav t hav a scan. I’m hoping my symptoms are due to this not brain mets but like Liz said there dust seem to be much info on hereabout it thers always something isn’t ther that stops us from moving on !!! Rozita x
Bump
Good luck for thursday Rozita- I really hope the scan is clear and it puts your mind at rest x
Liz I too have been wondering how you got on. Hope all was well with your scan x
Tina x
Hi lizzie hav u had ur scan r u feeling ok ? I had a ct of my head yestoday very quick but hav t wait 2 weeks for results but gp can chase up earlier so will ring .
No has posted on here are brain mets rare does it hav t go somewhere else first? My cloistered were normal so. Does that mean that my bones r ok ?? X rozita
Hi Lizzie
There is some info on secondary brain tumors on the Brain Tumour charity websites:
braintumouruk.org.uk/secondary-brain-tumours
braintumourresearch.org/index.php/about-brain-tumours.html
My husband died of a primary brain tumour earlier this year so I have a list of useful websites if you want more info. Most of the sites focus on primary malignant brain tumours, but they all have some info on people with other cancers who get brain secondaries.
Also there are some friendly and helpful forums out there dedicated to braintumours of all types.
I have only just been dxd with BC, but have been having neuro symptoms all summer that they thought were to do with and old spine injury, but spine MRI came back clear and now have to have brain MRI.
Fiona X
hello all, best of luck to u guys who r waiting for results or under going treatment. was diagnosed with sec brain mets and had surgery 6 weeks back, waiting for radiotherapy now. hope all goes well for all of u…warm hugs and may God bless…xx
Hi bestfriend sorry to hear what uv had t go thru iv not heard anyone talk about this what wer if sptpms n how did u find out ? Hope ur feeling ok n coping xx rozita
hi rozita, brain mets got diagnosed only by chance after breast cancer was finally diagnosed. was rushed to hospital in emergency and had brain tumor removed in two days as it was causing sudden confusion, loss of concentration, less mental ability etc,sorry i know does not sound very helpful/cheerfull , but thats what it was. not very good experience, still trying to cope with what has to come next. but trying to keep positive side up and hope u and everyone here get good news soon and come through healthy and happy. thank u for your best wishes and prayers for everyone. keep your chin up and stay strong. xx
hi rozita,
just logged back on to see if u have replied, actually felt really guilty posting such a sob story for u when u need encouragement. the waiting game is a very tough one and i hope the very best for u dear, love, bestfriend05
Hi best friend. Don’t worry I asked I’m a straightforward girl n want to kno it all. I rang again today still no results I think that’s prob a good sign. Think I would hav heard if not. But still want more tests as still getting headaches n felt sick this morning but hav t push for every scan will ask for one on shoulder and neck. You’ve gotta laugh but had a smear done last week n just got a letter saying abnormal cells!!! Haha. Ur havin a laugh. ( I kno it’s common so won’t stress too much)
I hope your feelin a bit better did u see the thread on cyber knife. Sounds good don’t kno if it’s available to you Take care let me kno how ur duin xxx rozita
Hi Best Friend,
Sorry to hear what you are going through.
When I was dignosed with my lump I also had pins and needles and vibrating down my left leg and arm and some probs with left eye, so they sent me for Brain MRI but it has thankfully come back clear.
My husband died from Brain Tumour Primary last March (aged 49) so I know more about Brain Tumours than I do about Breast Cancer. We had to fight very hard to get the right treatment for him. Its very much a postcode lottery with brain tumours. We also went to europe for treatment that was not available in the UK.
The cyberknife /gamma knife is good but depending on where your tumours are proton beam is also good for avoiding damage to critical parts of brain. It is not available in the UK though the NHS will pay to send you abroad for it if you qualify ( many oncologists don’t know about this, there is some NHS office in leeds through which all referrals have to go).
Also look into Temozolomide as a chemo . It is now the first line chemo for primary brain tumours, but is not often made available to patients with brain secondaries. It is an oral chemo and well tolerated by most patients(less side effects than FEC). In trials for secondaries it has showed improved outcomes for some patients.
PM me if there is anything I can help with. Good luck with test results.
Fiona X
sorry previous post was to both Best Friend and Rozita
I was diagnosed with 3 inoperable brain mets in Feb 2008 (nausea, vomiting, balance problems) and treated with steroids and targeted radiation. Recovered surprisingly well for someone who wasn’t expected to make it out of hospital, and when the BC recurred as lumps on the chest, I was given capcitebine. This seemed to manage to get through the blood/brain barrier, and my next brain scan showed that all that was left of the brain mets was a bit of scar tissue. Onc was surprised it had worked so well.
So it’s not always as bad as it initially looks, and hopefully you will get through this OK, although don’t expect your recovery to be quick.
Hope this helps.
Love L:ynn
PS If you have brain mets, you must hand in your driving licence to the DVLA. If you don’t and have an accident your insurance will be invalid.
Hi Lynn
Fantastic to hear that you had such good results with the WBR, particularly that the capcitebine has got through the BBB, I asked why my brain mets had occurred while I was on capcitebine as I had read that it does cross the BBB, but the onc said that as I have never had a brain scan before, there is nothing to compare with, and I only started it in August, so it may have had some sort of effect, but it wasn’t measurable.
With regard to driving, do you actually have to inform the DVLA? I have stopped driving, but was just expecting to inform them next November, after I hadn’t driven for a year, and all the brain was clear!!!(fingers crossed)
I finished my WBR and so far no SEs!!! Although my hair has all gone! I’m not even particularly tired, my eyes feel heavy, but I don’t need to sleep any more than usual - although I am quite lethargic and do things I want to like lunch, shopping, eating out, but the house needs a thorough clean, hopefully the thought of visitors at Christmas will prompt some motivation!
Hope everyone else on here is well! and I hope anybody waiting for scan results - gets good news xx
Hi everyone sorry not to get back to you but its been a nightmare with the oncologists appointments and scan mix ups … yes its brain mets one spot very small and they want to operate to remove it in one go. I wondered why my eyes were getting worse it is near the optical part of my brain, I saw a pic of my brain and the oncologist couldn’t find this spot took him ages lol and when he showed my hubby and I we couldn’t make it out either, so I am just waiting for next step op dates and stuff… will let you all know big hugs xxxx